MINIMALLY INVASIVE?

The Nuss Procedure is often referred to as a minimally invasive repair of Pectus Excavatum. Let me make this very clear. There is nothing minimally invasive about the Nuss Procedure from the patient’s perspective. It invades like the Trojans invaded Troy. It invades with steel ripping through muscles, tissue, and nerves. It invades with pain. Trust me, it invades like hell. The scars may be minimal, hence this seemingly odd moniker of minimalism, but when all is said and done, the Nuss Procedure is a very serious operation and not one to be undertaken without thoughtful consideration.

Giovanni Tiepolo, "The Procession of the Trojan Horse" (1773), National Gallery,  London

Giovanni Tiepolo, "The Procession of the Trojan Horse" (1773), National Gallery, London

WHAT’S HAPPENS DURING SURGERY?

Let me briefly describe, in non-medical terms, what will happen to you as you lay anesthetized upon the operating table.   For those of you who may be interested in a more precise medical description of the procedure, take a look at the Medical Research links in the sidebar.

Your surgeons (yes, there will be two) will make two incisions on either side of your chest, generally at the point where the dent is at its deepest. An “introducer” is pushed along under the sternum and ribs, basically to make a tunnel for the introduction of the concave Pectus Bar. Once the tunnel is created, the surgeons will insert the Pectus Bar through the two incisions. A third, smaller incision is made to insert a thoracoscope (small camera), which is essential to help guide the Pectus Bar along its journey from one side of your chest to the other side. Patients have died from the Pectus Bar piercing the heart, so the thoracoscope is an invaluable tool used to help prevent such accidents.

Taller patients, older patients, or patients requiring extensive correction may receive two or more bars. All bars may be placed through two incisions or additional incisions may be made. The bar is then flipped, and the sternum pops out. The popping out, I think, is reserved for younger patients whose bones are very pliable. My sternum is old and calcified, so it put up a bit of a fight, so my surgeon tells me. My sternum, rather than being “popped out” was brutally forced into submission.

Nuss

To support the bar and keep it in place a metal plate called a stabilizer may be inserted with the bar on one side of the torso. Absorbable sutures may also be used in addition to the stabilizer. The stabilizer fits around the bar and into the ribcage. Some surgeons, such as Professor Schaarschmidt, have achieved excellent results using only peri costal sutures, without the use of stabilizers. Eventually, the bar is secured with muscle tissue that regrows during the recovery time.

WHAT’S THE BEST AGE TO GET NUSSED?

Although initially recommended only for younger patients, the Nuss procedure is now commonly used on patients in their thirties and forties with excellent results.  The best age to get Nussed is between 16 and 18 years old.  Any earlier and there is a good chance of regression due to the fact that the bones have not stopped growing.  It’s best to time the surgery such that the bars are taken out just when bone growth has stopped, so that is why 16 to 19 years is optimal.

Younger patients also experience far less post operative pain because their bones are very supple and the sternum is easily pushed out into the correct position.  Older patients have less supple bones.  Accordingly, more force is required to push the sternum into the correct position.   Older bones equals more pain.  That does not mean, however, that older patients cannot achieve excellent results!  I hope to prove that to be the case!

HOW MANY BARS WILL I GET?

Younger patients usually end up with a single pectus bar, unless their PE is very severe. A single bar usually does the trick when the bones are still pliable. Older patients, on the other hand, or those with significant upper PE, ought to have two pectus bars implanted. Many surgeons fail to correct upper-PE with the use of a second pectus bar. This is a result of inexperience. An experienced surgeon is perfectly capable of placing a second bar. In fact, all older patients with moderate to severe PE should ideally have two pectus bars implanted. The additional support of a second bar makes for a much better correction and less chance of regression at bar removal. If you are an older patient, or someone with severe PE or significant PE, ask your surgeon about having two pectus bars. If he or she avoids the question or says that it is too difficult to place a second bar, then it’s time to consider changing surgeons!

When I was in Berlin, I met a young German guy who had extremely severe PE, as well as significant upper PE. He showed me his pre-surgery photographs and his PE was probably the most severe that I have ever seen. How many bars do you think he had implanted? Three!! Professor Schaarschmidt implanted three pectus bars into this guy and his chest result was absolutely extraordinary. His chest was flat and just perfect. And all of these bars were inserted into the same incision. So, even though he had three bars, he had exactly the same incision as someone who had a single bar implanted. I am quite sure that no other surgeon in the world would be capable of such wonders!!

IS THE NUSS PROCEDURE RISKY?

Any surgical procedure carries a degree of risk. The Nuss Procedure is no different. People have died during and after the Nuss Procedure. Deaths during the operation usually result from the pectus bar puncturing one of your vital organs, such as your heart. Deaths following surgery usually result from infection. The mortality rate for the Nuss Procedure is very small, but it is not zero. The statistics that I have seen indicate that it is less than 1%. That means that you have a greater than 99% chance of survival – excellent odds by any standard.

I am not writing this to frighten anyone. However, I would be remiss in neglecting to inform people that the Nuss Procedure does carry with it the risk of death, albeit a very small risk. It is always good to have all the facts at your disposal before making a decision to go ahead with the surgery.

BAR REMOVAL AND REGRESSION

Every Nuss patient is concerned about the possibility of a return of their PE once the bars are removed, also known as regression. Obviously, this is an extremely important issue. To endure the pain of recovery from the Nuss Procedure and then have the PE return once that bars are removed would devastating.

There are a number of factors which will have an impact on the likelihood of regression. The first and most important is your choice of surgeon. Chances of regression are significantly reduced with an experienced surgeon on your side. An experienced surgeon will ensure the bars are placed in the optimal position for correction of your deformity. Poor bar placement, or poor bar fixation, may contribute to regression at a later time, even before bar removal. Younger patients and their parents need to be particularly cautious and concerned about regression. Insertion of the bars too early can be a mistake. If the bars are inserted too early and removed before the child has stopped growing, the possibility of regression is increased. As mentioned earlier, 16 to 18 is the optimal age for the Nuss Procedure.

Another factor which has an impact on regression is the length of fixation, that is, the length of time that the bars are inside your body. Generally, bars remain in place for between two and three years. More aggressive surgeons will advocate a three year minimum. Older patients should certainly not have their bars removed before three years, unless there is a compelling reason to do so. On the other hand, leaving the bars in for too long is also not good because the bars will become too entangled in the tissue and bone and may prove very difficult to remove. I understand that 5 years is the absolute maximum length of time that the bars should remain in place.

So, although regression is a possibility following bar removal, it is fairly remote. If you are concerned about the possibility of regression, you should discuss the matter with your surgeon.

Bar removal is a relatively simple procedure when compared to the initial surgery. Your original incisions will be re-opened, the bar located, and then basically pulled out. The procedure usually last from 45 to 90 minutes and recovery and hospitalization times are significantly less than those for bar insertion. There are some excellent photographs of a bar removal procedure here.


190 Responses to “Nuss Procedure”


  1. 1 Matt
    November 14, 2009 at 12:58 PM

    Thanks very much for publishing this info. I have had PE all my life, I’m 26, and I’m finally going to do something about it. My first meeting with a thoracic surgeon is this Friday. I’m a little over an inch deep. Praying that insurance covers it, but if not, I’m flying to berlin to get it done. Were you really happy with Schaar? It seems that although expensive, that he is the way to go. Anyway, thanks again. It must be nice to share such an a wonderful success story.

    Matt

  2. November 14, 2009 at 10:02 PM

    Hey Matt,

    I think it is great that you have decided to do something about your PE. It takes courage to have the Nuss procedure. I cannot tell you how happy I am with my results. Professor Schaarschmidt is a genius. I am confident that no other surgeon in the world would have given me a better result. You could do no better than having him rid you of your PE once and for all.

    I wish you all the best on your journey. If you have any questions, please feel free to get in touch. I am more than happy to share my experiences with you.

  3. 3 Rob Harrison
    October 14, 2010 at 10:49 AM

    Hello! I’m 16 and I want to go and get this done. Not only do I hate the look of this pectus but I have heart problems too. I truly am suffering and really want to get this over with. But I have some concerns, is it true that I can’t drive while having the bar? Apparently jerking the wheel could dislodge the bar? And I’m very weak to pain and I’m so scared for recovery. Basically is this a bad choice to do as a teen?

  4. 4 Scott K.
    January 20, 2011 at 10:44 AM

    Hello everyone,
    My name is Scott and I’m 21. Today (this morning) I got my bar removed and let me tell you this was the best thing I have ever done for myself. I have had my bar in for 2 years, it was put in when I was 19. I cannot tell you enough how happy I am with my results. I had the surgery done at Childrens Hospital in Hartford. The 1st surgery was EXTREMELY painfull but also 100% worth it. To answer your question rob you can definitely drive a vehicle while the bar is inside you. You can pretty much do anything you would normally do. I have a motorcycle and that didn’t even cause me dis comfort. I have wreslted around with buddys, gone snowmobiling, and even skydiving all with the bar still in me. Today I got the bar removed and the pain was nothing like the 1st surgery (maybe because I’m on pain meds still haha). The 2nd surgery is a day-in day-out procedure. They even let you keep the bar when they take it out ha! All in all this surgery has changed my life forever. The results are amazing and I can do things now I wouldn’t do before because of how my chest looked. I highly recommend this surgery for anyone who has been thinking about having it. It has changed my life forever.
    Scott K.

  5. 5 hesoyam
    January 24, 2011 at 6:16 PM

    Hi,i want to ask how much does the Nuss procedure cost in Berlin.

  6. January 29, 2011 at 9:16 PM

    @ hesoyam – the price for the Nuss in Berlin is around 20,000 Euro. I think a redo is a few thousand more.

  7. January 29, 2011 at 9:17 PM

    Thanks so much for sharing your story, Scott. Very inspirational for anyone considering the surgery.

  8. 8 James Cross
    February 2, 2011 at 9:52 AM

    hello everybody! I was wondering how many incisions will there be when the bar is removed? one or two incisions needed to remove it??thank you

  9. 9 Matt Fort
    April 2, 2011 at 4:28 AM

    Hey there all,
    In January of 2007, at the age of 19, I went in for my Nuss Procedure. The severity of my excavatum was moderate and my ribs were flared out significantly so naturally I wanted the cosmetic fix, help with posture, and was looking forward to the increased lung capacity.

    However, after about a week or so of careful movement and sleeping positions, the bar flipped while inside my chest. My pain meds were upped and I was scheduled for another surgery soon after. This time around the surgeon made an incision close to the middle of my chest and tied the bar to one of my ribs so it would not flip again. In hindsight he probably should have tied it to both sides of my ribcage because after another couple weeks the bar shifted up into one of my intercostal nerves under a rib on the left side of my chest. I should state that my intention is simply to warn of possible (though highly unlikely complications) that I experienced. I encourage anyone with pectus excavatum to look into the Nuss Procedure and Ravitch Technique. In fact, the vacuum bell and 3MP (magnets) are proving to be successful in short-term treatment (long term success is still under investigation). My particular surgeon has been doing the Nuss and Ravitch a couple times a week for at least 10 years now and I am one of the two that the technique has failed with among his patients. I still have great faith in his ability. I believe some chests reject the bar. If that is the case I would encourage anyone to stick with it because these new techniques do look very promising. Best of luck to all of you in your journeys.

  10. 10 Matt Fort
    April 2, 2011 at 4:30 AM

    I should add that after the second failure, the bar was taken out even though my surgeon wanted me to keep it in for 3 more months (until summer) and then have two new bars put in.

  11. August 5, 2011 at 4:22 PM

    My NUSS:
    Hi guys, I am 17 yrs old (male) and it has just passed a month since my NUSS procedure! My PE was considered mild/ moderate by the surgeon, but to me it was a big deal and I really wanted to have it sorted out, anyway I had the surgery and spent 4 nights in hospital dosed up to my eyeballs on painkillers before going home.
    I am still in a lot of pain, although it is getting less frequent; I used to wake up very early every morning in pain which was not much fun, but as the day went on it would get less bad (maybe as i loosened up after being still all night).
    I suppose I’m writing this obviously as a young person who has had it done, and knows what it is like and I want to say that from my point of view it has not been as bad as the surgeons make it out to be, perhaps they try to prepare you for the worst! I’m certain that being young has meant it is much less painful so I would recommend it to any guys my age who are considering it, if you leave it until later life it will be harder to get through.

    I’m pleased with my results, and especially with the post-operative care I have recieved from the hospital and my GP etc, just looking forward to being properly up and about once more!

  12. 12 Howard
    August 23, 2011 at 4:25 PM

    I want to have it done how do u have to sleep when you get the bar put in I am 18 right now

  13. 13 Becky
    August 27, 2011 at 4:02 AM

    My son had this surgery last year when he was 16. He had a pretty deep deformity in the chest, however his surgeon thought he only needed one bar. It has been a year now and my son complains that he feels crooked inside that he’s not centered. His left shoulder blade sticks out further than his right one and you can feel the bar on both sides of rib cage. One feels higher than the other. He’s wanting it out now but I’m really hesitant after all he’s been through that it would be too early since it’s usually 2-3 years in. My question is has anyone else felt any of this, the feeling of being crooked inside and having your ribcage really pushed out and shoulder blade. It would be nice to share with him so he doesn’t feel all alone in this. I have contacted his doctor and am waiting to hear back.
    Thank you

  14. 14 ashley
    September 8, 2011 at 2:11 PM

    i had the nuss surg done and its a big deal im 26 and a girl . i could knt for the life of me find one girl thats had this done and im pretty sure becase of being a girl it makes this harder the extra weight on the front of your cheast and if you got breast your not wearing a bra and those breast feel like ther weights being pressed down on your cheast . i had to put a pillow under my breasts against my stomick to take the prasure off my cheast. i had a pillow every wear i whent so i could hug it if i coughed or a big breath. i told my doc that and he said that he was going to tell others getting the nuss done to do so it helps a lot . its 4 months after and im still in so much pain.doc says ill be off work for a total of 8 months . i still have trouble geting out of bed some times and i cant take a big breath yet. this is a very painful thing to do to your self and its not a joke just the small things like coughing or snezzing can feel like a ufc fighter is punching you but from the inside no joke you snezz and it while bring you down to your knees im hopeing that month 5 gets better but month 4 is bad . im very shy about talking about this not many people know i have this only a few , but i feel like as a girl i would of really liked to of asked a girl what it was like for them . all and all aside this is the most painful surg there is ut there if your and adult my doc said so and all the nurse agreed . my stay at the hosiptle was going to be 5 -7 days i was in there 16 days none of the pain meds worked . you have to train your self all over again from sitting to walking ,bending ,breathing . i know i had to get it done i had heart problems and lung proublems the doc’s had me on heart pills and puffers before i had this done. dont do it if you just wont to look better like most do everyone has a flaw .

  15. 15 Anonymous
    September 14, 2011 at 8:27 AM

    One surgeon, one hour, one bar. Good result for us. Plenty of postop pain but resolved in two weeks, then went to level of “discomfort” for two weeks, now is pretty much okay. Recommend Dr. Mickey Koury in Jackson Mississippi.

  16. 16 Anonymous
    October 8, 2011 at 7:24 PM

    I had a Ravitch first and three years later a Nuss. HOLY SHIT was the Nuss way more painful. Had I known about the extent of the pain difference I would have said “try another Ravitch”. I also have had two spinal fusions in my lower back so I know of some pain. I’m already 27yo so that might have had something to do with it. I also only stayed in hospital for 4 days with only 1 day on a morfine pump.

    But anyway, never again for cosmetic reasons :D

  17. 17 Becky
    October 24, 2011 at 10:08 PM

    It’s me again…my son who is now 18 had a repair surgery of the nuss bar just done. Actually we are still in hospital. His first bar had shifted which caused him the unbalanced feeling inside and then they added another bar above that. His chest looks great now and the pain is nothing compared to the first surgery. They do have to collapse the lungs to get the bar in, but with the scar tissue from first surgery they had to loosen from chest wall which created tiny “tears” in the lung so he had to have chest tubes put in to get the leaking air out of chest wall. We still have one in now and am waiting to hear from dr. if it can come out today so we can go home. Been in the hospital for 6 days now…but think that second bar is really going to stabilize everything and help. I would suggest if anyone getting this done with a big depression to put two bars in the first surgery. It will be better.

  18. 18 Anonymous
    November 3, 2011 at 7:38 PM

    I have a friend who had a Nuss Procedure completed 18 months ago in Norwich. He is 36 years old and waited nearly 10 years for this operation on the NHS. He is now 18 months down the line, in constant pain, has not been able to lie flat since having the operation and feels like the bar has been fixed incorrectly. Yes the chest dip has gone however his left pectoral muscle is now deformed as the closing of the incision has not been done correctly. He is in a worse mental state now than before the procedure. His surgeon at Norwich is completely unhelpful and he was left with no after care AT ALL (that has fallen to me). Because of his lack of faith in the Norwich team he was referred to Leeds where they have now said after 3 appointments that they cannot help him and that his GP will now have to refer him to somewhere else. He now just wants the bar out. It amazes me how online you can get information about the syndrome that goes along with this condition and yet not one medical professional will acknowledge the fact that this syndrome exists.

    This guy feels like his life is over and can see no way forward as he not getting the answers he should be getting. If only he had the means to see a surgeon privately. Then it would definitely be another story.

  19. 19 Anonymous
    January 19, 2012 at 11:28 AM

    Hi my name is cody and i am 13 and i am having the nuss procedure in the summer and I am nurves and excited to get rid of it. Also how bad is the pain.

  20. 20 angela whiteman
    January 20, 2012 at 6:30 PM

    Angela

    my daughter’s pe was severe, the op took 5hrs, 23/11/2011 the pain while in hospital was bearable,since being home she cant sleep lying down,finds it really hard to shower herself,her shoulders constantly hurt,she wishes she hadn’t had the op,she wants to be back at school having fun with her friends, I hope things improve, the pe wasnt affecting her health just her confidence.I.ve spoken to staff at the hospital they say It will get easier.the pe has improved the dent in her chest but she has one breast that is significantly different to the other and the surgeon said when the bar is removed in 2yrs she will most likely need an implant.

  21. 21 angela whiteman
    January 20, 2012 at 6:42 PM

    I feel for each and everyone of you,I didn’t know anything about pe till my daughter asked why she was this way she is 16yrs old and has her whole life ahead of her,

  22. 22 Erin
    January 25, 2012 at 10:34 AM

    Hi, I’m 15 years old and I had this procedure done 14 months ago. I had severe PE and it was impeding on my breathing. I’m an athlete and we actually discovered my PE on accident and the surgeon fixed it a month later. You can Probably imagine how scared I was, being a 14 year old girl reading all kinds of horror stories on the Internet, and the actual surgery was hell. When I woke up I was in unbearable pain because I wasn’t properly medicated. It almost completely corrected my PE, but I still have constant aching. I can’t sit or lay in certain positions, and the clamp sticks out (I’m 5’8 and 125 pounds) very far so I have to be careful not to get hit there. I’m glad you posted this information about the removal, I don’t think my surgeon properly prepared me for any of this. I was not informed that there was a chance of regression if it was performed to early, so now I know to be incredibly careful after the removal. Thank you for all of this information, and good luck in the future.

  23. 23 Ian
    January 29, 2012 at 7:13 PM

    My Daughter has a moderate form of PE, and after an initial briefing from a “specialist” I count my luck stars that I’ve found this site. We we’re told that there is nothing to worry about and nothing that could be done besides exercise and posture. There was no discussion about the condition potentially worsening at puberty, or the fact that they have a scale for the severity of the condition.
    My daughter is 2, but PE was recently put in the forefront of my mind a couple days ago when at a friends pool a 7 year old asked three times about the “huge hole” in her chest. Needless to say it hurt.
    Kids can be mean, self confidence is as important as good health, and my daughter will need all the information possible to make an informed decision whether to have anything done about it. As I won’t make the decision for her (unless there are health issues) I want to provide her with as much info as possible.
    Pectus Dude, or anyone else: Is there any difference in the outcome or timing of the Nuss procedure for females due to the fact that woman stop growing earlier then boys, have different hormones, and have breasts?
    To any parents with children who have PE, do you have any suggestions on helping the children deal with teasing or self image problems?
    I know she’s young, but as much information as possible can’t hurt.
    cheers

  24. 24 Declan
    February 7, 2012 at 12:04 PM

    To above^

    I would highly suggest reading this article (http://www.cardiothoracicsurgery.org/content/3/1/40) published by Dr. Nuss himself. I did find around 2 months ago a different article with the success rate of this trial for all the different ages however i cannot seem to find it now. What i found though was that the younger people have this procedure the higher re-occurence rate there is. Depending on where you’re from you may have some specialised pediatric nuss surgeons. For example if you live on the east coast of Australia like myself Prof. Richard Chard from sydney is quite the expert on children under the age of 16 with pectus. As for the difference in boys and girls i can’t be sure. I’m a 16 year old male and i’ve had this my whole life up until last month and yes, children can be cruel; but if you decide not to have this done explain it to your daughter as soon as she can understand. I only found out what it was about 10 months ago and i never knew why i was different, why i had a hole when others didn’t. All i can really say is talk to specialists and decide what’s best for your daughter, after all it’s her future. If you have any more questions, feel free to ask :)

  25. 25 Joshua
    February 9, 2012 at 2:21 AM

    Hey, I’am from UK, and had the Nuss Procedure done around 7 & half weeks ago. For years I wanted this , now I have achieved it!!! DETAILS: I warn you now, it is extremely painful!. I wish I could say it wasn’t bad but I’d be lying sorry. (Pre-op) you are in hospital the night before op, in morning a nurse will give you tablets that will make you dose off as you make your way to theatre. Once you are sleeping, the anaesthetist will arrive and put the epidural into your back near to your spinal cord!! This epidural will be your main pain killer. (Theatre) depending on your surgeon , they will decide wether to use thorax scope or make and central incision in chest to guide bar through. I convinced my surgeon to change his system of this to the scope in which I feel extremely good for being able to sway a surgeons methods. The thorax scope is key-hole and results in minute scarring.Two small incisions on either side of chest with the 3rd for scope, the path will be made by an introducer then the pectus bar will then make its way accross you chest way the most depressed point of you PE, the life changing moment then happens, the concave bar is flipped and their you go. (post-op) the epidural will be replaced with a morphine drip and then the next day you will move to ICU, I found the morphine fantastic haha, BUT, it seriously affected my bladder and I had to have a catheter , morphine will take any pain away but I had to be siphoned of and then that when the hell starts… You will be on strong tablets but these a dwarfed by the shear pain of the op, the week I was in hospital was the hardest and I could move for the pain, I will not go into that but trust me, honest opinion, I FELT suicidal! Ha that how bad it is. Sorry for the scare. But I’m in my 7th week now and have no pain what so ever, yes the main pain of it remains , and I can’t sleep on my side , cough , sneeze or laugh much, but thus is the main feature that will I feel are getting better every day other than that I am pretty awsome. My main goal is for those features , once that has happened, prob for me in next month or 2, It will then just be in for prevention of regression+ a waiting game for it to be took out, but you will be 100% at this point were I am nearly at. Hope this helped dudes. Over and out!!!

  26. 26 Joshua
    February 9, 2012 at 2:38 AM

    Hey, one more thing to add. I was 16 when I had the Nuss Procedure , and I just turned 17 their on 26th January 2012. And now it has Been around 7 & half weeks ago since my op. I recommend you to have this op at the stated optimal age 16-18 , I feel extremely lucky to have been in the optimal age bracket and further more to be in one of the top 3 countries of the world were the Nuss Procedure is practiced, were the best of the best surgeons are found ( U.K , U.S & Germany ). Looking forward to summer, hopefully with all my highers/ a-levels and to be 100% again. Any questions feel free everybody!! :D

  27. 27 Rebekah Jones
    February 10, 2012 at 11:38 AM

    Hi, thank you so much for this site. My son has PE and at 3 is not really that aware of it yet but I know my nephew (also with PE) is very aware of his chest and hates taking his shirt off. I must admit that I have shed a bit of a tear when reading about the procedure (especially the bit about the bars potentially piercing the heart…) of course all surgery has risk.

  28. 28 Anonymous
    March 8, 2012 at 9:34 AM

    My 15 year son had the Nuss procedure (one bar and two stabilizers) at CHKD, Norfolk, Virginia. This is the place were the Nuss was invented and people come from all over the county and world to these surgeons. My son had a fabulous recovery with no complications and was off all of the pain meds after one week. He was playing competitive soccer about two months after the operation and started lifting weights after 3 months. He will be scheduled to have the bar removed this summer. We are hoping for another great experience. He is so happy that he took the risk and that we traveled over 1000 miles to go to CHKD.

  29. March 26, 2012 at 2:53 AM

    I’m a girl with PE and wanted to address the self image thing. I know I first noticed it when I was 10 (my PE is moderate I’d say) but it didn’t really bother me until I started shopping for bras and two piece swim suits. I asked my doctor when I was 10 about it and she didn’t give me any information on PE so I basically didn’t realize I had it until I did some research online in my teens. Now I’ve kind of embraced it (my boyfriend has it too) and I’ve never had anyone tease me about it. In fact most people were jealous because I was excused from running in gym class. I’d say just talk to your daughter about it and give her all the information about it and let her get the surgery or not get it, whichever she decides. I’m 18 now and looking into getting it fixed because recently my cardiologist brought up the fact that it might cause problems if I decide I want to have children. It’s caused some health issues like severe chest pain during exercise and sometimes I just randomly feel pressure and I know my parents never really took my concerns seriously which was the biggest problem I encountered. So I’d say just be super supportive of her and don’t brush things she’ll bring up to you about her PE off.

  30. 30 Anonymous
    March 28, 2012 at 7:11 PM

    I have a 5 year old daughter. Over the past few years doctors who have examined her for various reasons have made brief comments about her having PE – but nobody made a big deal about it, basically briefly commenting that she may have some issues in her teenage years and we could deal with them then. We recently saw a doctor who suggested that perhaps we should look further into the issue. Now my head is spinning!!! I feel terrible about subjecting my daughter to this surgery “just in case” she has health issues down the line and/or “just in case” she is subjected to the teasing and taunting that she, in my mind, will inevitably face. But I think it is something that we should do. Looking into case studies, the mental health issues that are associated with PE are just as important as the general health issues. I have read that the best age for the surgery is between 8-12. As she is only 5, I have downloaded exercises that hopefully can help with natural correction. Whether they will work or not…..I don’t know. But I’ll give it a go until I can get in to see a specialist who can advise me on what path to take.

  31. 31 Randy Gillis
    April 5, 2012 at 8:54 PM

    I am 62 years old, and was considering the Nuss procedure , not so sure now,heard a lot of mixed reviews.
    My pectus would be rated as severe, has always been embarrassment to me. Never can feel you can walk around without a shirt on. Mine would be cosmetic , even though there is discomfort assocaited with being hunched over. Insurance will not cover.
    Any thoughts
    Randy

  32. April 11, 2012 at 11:56 AM

    Randy, at 42 it took me 12 months to be pain free. At 62, I cannot imagine the trauma your body would undergo. I would not do it. Also, I do not think you will find a surgeon willing to do the procedure. Dr. Schaarschmidt, the surgeon who did my Nuss procedure, decided recently not to accept any new patients over 50 – due to the increased complications.

  33. 33 Kendra
    April 14, 2012 at 4:04 PM

    To the girls, and mothers of daughters with pe:

    I am 24 year old female with moderate pe. No one other than my husband knows, but even then I am self conscious about it. I wasn’t aware of being different until..17? Why didn’t the other kids tease me when swimming? Because I was lucky to be a girl with conservative parents who bought me one piece swimsuits to cover my goods (and my abnormality). When I was a teen, I was so self conscious of being “flat chested” (in the boob dept, lol I wish in the sternum department) that I only ever swam with family and close friends. As far as affecting self confidence, I can swear to you that having small boobs is WAY WAY more of a self trial than pe. So if you worry about your daughter having issues with her pe, don’t worry about it anymore than if she ends up with a small rack. Speaking of, another thing to consider… A female with pe is a little more blessed with options. Breast augmentation can arrange the size and placement of the breasts to really help reduce the appearance of pe. This surgery is a lot less painful it sounds like, and may be an option to try before dealing with the long term pain and complications and unknowns of the Nuss or Ravitch. And for the mother of the little girl, I let her make the decision at prime surgery age with all options discussed. Also, I have had one baby, with no complication during pregnancy. I will say that I probably did deal more with the discomfort of a giant baby in my misplaced ribs and my organs probably relocated to different spots other than where the move to for most pregnant women. But I’m sure it’s worse with twins, so not worth the surgery for that reason alone. I have considered the Nuss myself, but I honestly think that if I do, I will want to get a boob job, then make my nose perfect, and get lipo even though I’m medically underweight. Too be honest, I would be more self conscious if I had gotten stretch marks than I am of my pe. As a girl, I will always have untouchable beauty along with a mountain of insecurities. Having pe or not having pe would have made no difference in my eating disorder. But for what it’s worth, everyone has always said I should be a model, so pe can’t be that bad. As for being a boy/ man with pe, I don’t know what that’s like. I guess you would look a little silly in a one piece swim suit, even though there are some really cute ones out there! But like you I didn’t have a giant rack to hide my pe either, though fortunately for me it is considered rude to stare at a girls chest, even to look at an abnormality. But if you ever feel like whining and feeling like you’re a rare creature on earth who’s sole purpose is to be made fun of, don’t worry, there are millions of overweight boys with moobs and girls with double A chests (and unlike the dd, that’s on the smaller side of the spectrum) who are mocked everyday in the locker room and at the pool. You’re case of being different or insecure isn’t automatically worse than theirs because it’s less common. That makes it easier, there are pages of jokes already written.

    But if it is the only thing in the world that bothers you, by all means, fix it. If one thing would make me perfect, I damn well would get it done.

    I envy those who got it done, I still want to do the procedure, but can’t anytime in the near future because the recovery is not compatible or possible as a mom (I get at least one weekly head butt to the sternum from my tantrums prone toddler) and we want more kids so each kids is 3 years of no possiblity of this procedure (with pregnancy, nursing, and lifting a 30 lb toddler 30xs a day).

    I know that was long, but other I had some aspects to had that hadn’t been mentioned since pe in females has more factors to consider.

    Sympathy for everyone, and love! Live long and prosper! Everyone will find they have pe for a reason, so reach out to those who are different, and don’t be ashamed! That’s how the bullies win

  34. 34 Kendra
    April 14, 2012 at 4:37 PM

    …. To clarify, my comment was geared towards an opinion of the cosmetic aspect of pe. I realize everyone with it has other problems with it as well. I myself have had chronic upper back pain, despite doing evrything I possibly can to correct it. That alone is my motivation to want to have the Nuss procedure done, but thanks to everyone on here, and other things I have read, I don’t think I would think the severe pain for so long with the possibilities of multiple procedures would be more beneficial than the back pain I have now. I’m sure if I had the time and settings to allow an easy going recommended recovery, I would be more apt to go through with the procedure. So if you’re considering the procedure, I would read comments and blogs about multiple cases of the same severity, and same aged patient to gauge a realistic recovery time. Possibly even contact those people and asks about how they think it would affect the things you want to/need to/have to do over the next 3 years. I would obviously suggest to not do the procedure if you have or will have or want to have a child under 3 yrs old in the next 3 years, whether you are male or female. Unless you think you can go a couple months without holding them. :(

  35. 35 Anonymous
    April 22, 2012 at 11:33 AM

    Im a 16yo male and have a mild case of Pectus Excavatum, after surgery can you lift weights?

  36. 36 Stacy
    April 22, 2012 at 5:18 PM

    Hello, I am particularly interested in Joshua’s story as my son is 16 – It is 4 weeks following his Nuss procedure – he is so down – the pain is dramatic – we were told to come down off the Diclophenic and Tramodol as there were withdrawal symptoms so he just has Co-codamol and ipubrufen and he is in a seriously bad way every 4 hours – he tried going to school last week and was home by 2 and it wiped him out – we are up in the night to take his pain killers – I just want him to know this will get better – he is not in a good state of mind and a dip has appeared so I think it has moved and he has pain on the left side mainly (whre it is attached) I hate watching him in pain! He has been so determined – do you think he needs to step up his pain killers? Anybody can help me – it is just Joshua is the same age and seems so positive and well I’m also feeling pretty sad (as any parent would.) So glad I found this site – I feel better just writing this :(

  37. 37 Anonymous
    April 28, 2012 at 8:33 AM

    Hi everyone,
    I was submitted to Nuss Surgery when I was 21 years old and I can tell you that it was very painful. I put 2 bars and my PE was not totally corrected.

    Moral of the history: I don’t advice this kind of surgery for those who have severe PE. Your problem will not be totally remedied and I am still not able to take off my t-shirt in public.

  38. 38 amanda
    May 3, 2012 at 1:26 PM

    Hi- I’m a 22yr old female. I had a severe case of PE. I had the nuss procedure at 13, bar was removed at 16. Recovery was a breeze.

  39. 39 Sam
    May 5, 2012 at 8:33 PM

    Hi Everyone,
    I am 20 years old and I’m now 100% committed to having the nus done. I looked into getting it a couple of years ago but my GP and the surgeon in the consultation managed to scare me off it. Since then I’ve continued to feel depressed and incredibly self conscious and unhappy. My questions are:

    How long does it take from the visiting the GP to actually having the operation?
    If you don’t go through the NHS how much does it cost?
    On completion how long until you can play sports and do physical activities?

  40. 40 llg
    May 9, 2012 at 6:43 AM

    Greetings!!

    Mother of a PE here, also an RN. We noticed our son’s PE right at birth. His xyphoid process was nearly sticking out from his chest, and the sternum was caved in. He had a pretty narrow upper chest and looked like he had a pot-belly (cause he did!!) for most of his growing years. his pediatrician told us to watch it and see how he developed. We always told him, if it bothered him, to let us know. He did the research himself and decided on where he wanted the surgery done.

    He really adapted pretty well to having the PE, played football in highschool and is a great singer. He was not able to build his muscle strength quite like his friends, even with lots of weight lifting. His choir director told me recently, that she could tell he was breathing differently that normal…when he took a deep breath, his chest “sucked in” instead of expanding!

    He is now 21 and about to have his Bar removed! The bar will have been in about 2.5 yrs total. He had it placed at Children’s Hospital of the King’s Daughter in Norfolk VA, by Dr Kelly.

    The recovery from the placement surgery was horrific in the pain department. He needed pain medication for about 3.5 weeks, tapering off each day. Then there was adjustment of having this “thing” in his chest. We were able connect with great local doctors for homecare. The staff at CHKD sends you home with CD’s of pics of the surgery, surgery reports, radiology reports and etc to help with the transition home. We also worked with a couple chiropractors that helped greatly. Of course they had to modify their treatment, but it provided alot of stress relief.

    We did have one strange complication that was resolved by antibiotics. About one year after the surgery, on one of the surgical incision scars,he developed an infection. It is thought that somehow a small piece of suturing never disolved and sort of left a “wick” to the outside, leaving a place for infection to grow.

    One interesting note about the pictures they provided us with… AMAZING to see the inside of your child’s chest wall. His sternum was rubbing on his heart slightly before, and the after pic shows the sternum in the same place, now about 1.5 to 2 inches from his heart.

    Our son did have some adjustment times with having the bar in place and trying to find a comforting way to sleep. We got him lots of pillows and proped them all around. Gradually he has been able to find the most comfortable resting positions.

    He has also been able to lift weights after the first year out from the surgery and finally has a symetrical chest and GUNS!!! His scars are barely noticeable, and Dr Kelly will use the same suture lines to remove the bar to minimize additional scarring.

    All in all we are very glad he had the surgery. For me it is knowing his breathing is normal AND his sternum is not rubbing on his heart! For him, of course, it is the nice looking chest and “lack of dent”!!!

  41. 41 Anonymous
    May 12, 2012 at 3:44 PM

    Hi, I’m 16 years old and considering the nuss procedure to correct my PE. I’d like to know if it affects me in any way preventing me from doing things and how long the pain lasts and how bad it is.

  42. 42 james
    May 23, 2012 at 9:28 AM

    i am 14 and have PE. we recently wen to the doctor to see if we could fix it. being a pediatrisian, they said no. i really hope to have it fixxed and the nuss procedure seems to be the best route. i hope that the next doctor we go to will help.
    if you have anything you would like to say, go ahead. i’d be more than happy to hear from anyone going through what i am going through.

  43. 43 Joshua
    May 23, 2012 at 6:18 PM

    Just read Stacys story. It’s Joshua here, well this has been nearly 6 months since my op, and I am on absolutely no tablets what so ever now. I am able to laugh , cough, and nearly sneeze normaly again. Their is still a slight pre-operative pain that arises now and then but is normal as I am 6 months from my op, and can sleep on my side normally etc. Stacy, your son has a similar experience I went through and since you posted a while ago I assume that his pain has died down now and he is taking less tablets and start feeling that his body is getting back to normal, he will be in significant less discomfort after a good solid 3-4 months has been achieved. I was in the same boat as him Stacy when I got back from pre-op and my mum had to get up few times at night to give me either a cocodamol or tramadol. Don’t worry he will be getting significantly better each day! I am planning on doing an expidition in July 30th 2012 with couple of guys , we’re cycling from Glasgow down to the lake district then isle of man! So Iam hoping my chest will be back to 100% by that time. Just make sure he has a positive outlook and that he keeps his posture and breathing regular and practiced. I hope this had helped Stacy.

  44. 44 Anonymous
    June 20, 2012 at 10:57 PM

    Karen

    My son had the op in 2004 when he was 15 his pc was very severe. It is now 2012 and he is going to be facing this again. The bar the first time came loose 1 month after surgery and he went back in to have it re-attached. It was supposed to be in for 3 years and only stayed in 2 because it came loose again. There was a decent correction but as time has passed it has gone back to where it was and now his lungs are severly restricted.

  45. 45 Hayden
    June 24, 2012 at 9:34 AM

    I’m a seventeen year old girl and I’ve had pectus all of my life, however, as I grew it became more severe. I started to have chest pain and decided to talk to my general physician about the procedure. The decision was purely mine as none of my doctors have ever suggested taking action on my pectus. The physician recommended me to a specialist and I found out rather quickly that my case is very severe. Very severe. My Haller Index is 9.7 and there is an inch between my spine and sternum. I breathe at about 46% what I should. My specialist was appalled at how well my body has compensated. Needless to say my surgery is covered by insurance and was scheduled for July 10th. I’ve been doing physical therapy in preparation for the surgery, conditioning my muscles for a better recovery. However, everyone around me is very excited for me to be a healthier person, and while I do recognize that I’m not on a good track, i can’t help but wish I could keep my pectus. For me it was never something to be ashamed of, it’s part of me. I’m just not sure how to deal with the emotional side of the surgery, waking up and being a foreign object to my own eye. How do I begin to fathom it?

  46. 46 julie
    July 9, 2012 at 7:11 PM

    my daughter is 13 just had the nuss procedure and we already went back to have it moved back in place it flipped only 7 days post surgery .this caused her incredible pain. she was readmitted into the hospital and they had to move it back into place and bracket both sides instead of one .th depression in her chest is not 100 % gone and she is still in pain. this is going on 3 weeks post surgery still on pain killers around the clock and depressed about having to go back the dr. could not guarenttee that the brackets would work to not allow it to move again. she has severe pe and wants this over with. she is now home on bedrest for 2 weeks only able to move to go to the bathroom. i pray for her sake this time it works and stays put.

  47. 47 Dave
    July 17, 2012 at 8:22 PM

    Thanks for the great website! Do have any info on the cost of the procedure and how to go about gettin a doctor to approve the surgury?

    Thanks,
    Dave

  48. 48 Anonymous
    July 22, 2012 at 10:58 PM

    Hi I am 36 years old and I was interested I have PE and I was wondering does anyone in the forum has an information about the cost of the surgery at Dr. Schaarschmidt. And what is the procedure for appointment? Is it to late for me?

  49. 49 Teri
    July 25, 2012 at 9:33 AM

    My son is 14 and had the nuss procedure almost 4 months ago he still has some pain on the right side. He was off major pain pills his 2nd week post surg. his chest looks good his ribs did flair out after surgery but can be corected. He has resumed activities such as weight lifting, water sking, and getting ready for football. He does feel like breathing is better and his Pe was also pushing on his heart so that has to be a better situation then before surg.

  50. 50 peteypablo
    July 29, 2012 at 2:07 AM

    i just had my surgery a 9 days ago at the Childrens hospital of the kings daughters up in Norfolk, Virginia. I couldnt be any happier with the results. Before surgery, i was really curious and would look up ALL the forums i could find about having pectus, so for all of you considering surgery, i know how you feel. Its been 9 days, and i feel amazing. The first 4 days in the hospital were pretty tough, but youre so drugged up you only feel the pain when your awake to take your meds. otherwise, your sleeping. i stayed in the hospital for 5 days and than was allowed to leave (they had to monitor me because i had high blood pressure). The pain hurt and sleeping was pretty impossible for the first week, but being able to look down and see my chest was amazing. I had a haller index of 5, which is considered severe and it was very wide. I was obviously really self conscious about it and thats why i had the surgery. I dont have a perfect body now, but im so happy with the results from the CHKD hospital. as pale as i was, I went to the beach and took my shirt off in front of my friends and girls for the first time in 6 years. it felt amazing and now i cant stop looking in the mirror. the surgery is life changing and i recommend it for anybody that is considering it. Im a 17 yr old living in Florida and its altered my life forever!

  51. 51 Angel
    August 3, 2012 at 2:42 AM

    My 13 year old son had his surgery on June 18th. His Haller was 7.3 and he received two bars. Things were okay at first. He got really car sick after his post op appointment and ended up swollen and in pain. The bars had shifted. We were supposed to take it easy and see if more healing and scar tissue would hold it in place. He started feeling clicking and rattling when he moved, like the bars were moving around and hitting each other. Then he had a sharp pop. So now we are waiting til Monday to find out if they will try to reposition the bars and stabilizers or remove the top bar. So far, it seems like he is not going to ever get back to normal the way things stand. I worry that removing the top bar will cause an indention again. The doctor thinks it may happen again if we jsut reposition. So he is resting in bed until the surgeons see us Monday and tell us the decision of what is best. Has anyone ever had this type of experience?

  52. August 3, 2012 at 7:47 AM

    I’m very sorry to hear about your son’s troubles. Unfortunately, it is an all too common story that results from inexperienced or poor quality surgeons. My surgeon has done over 1,000 procedures and not one patient has experienced bar displacement. I hope that your son’s bars have not displaced. Good luck.

  53. 53 Angel
    August 3, 2012 at 10:34 AM

    Thanks Pectus Dude. I am hoping that he will be on the road to recovery once the situation is fixed. It gives me hope that the bottom bar is at least in there and staying in position and hopefully we can have a happy ending.

  54. August 3, 2012 at 11:48 PM

    My daughter DIED after having a nuss procedure done before the op she was a healthy lively 16yr old girl
    Pectus excavatum took away her life…………

  55. August 8, 2012 at 1:42 PM

    I’m so sorry to hear this. I have heard of several deaths during PE surgery. It is very rare but it happens. There is a risk of death with any surgery where general anesthetic is used.

  56. 56 Momoftwins
    August 18, 2012 at 8:50 AM

    My twin sons had the nuss procedure done mid-July. Both had the surgery the same day. We knew they were going to have the surgery since March, but waited until summer and just the waiting was awful. They are both doing well and are almost back to their pre-surgery activities. They will be 14 later this month. Both are glad they had the surgery and said the pain was less than what they were prepared for. It’s an individual decision, we did get a second opinion and both docs recommended the surgery.

  57. 57 sean
    September 7, 2012 at 1:07 AM

    hey dude, listen you know when you have the PE sometimes your lower ribs pop out or bulg out a bit?
    does the surgery fix it or do i have to do another surgery to fix that aswell?
    ehem* im 15 ehem* 0.o

  58. 58 hannah
    September 7, 2012 at 11:06 AM

    Wow this is eye opening to me to see how many people have had this done. I really felt alone so it is amazing to know all of us are out here and that we endured that. To start off. I’m a 17 year old girl. I think I am probably the youngest of most of you to have it put in. It was put in at 13 removed at 15. Ashley, YES IT IS HARDER HAVING IT DONE AS A GIRL. IT IS SO MUCH HARDER. I had the one bar and that was quite enough for me thank you. I had complications with a swelling a few months before I was scheduled to have it removed. But to anyone reading this worried about the removal surgery, it is nothing NOTHING like getting it in. It is so much more manageable. I will say that being thin makes it a little more painful of an experience. The pain meds for me (6 days of hospital getting it in) made me throw up, the whole time. I lost 20 lbs or so, and I was tiny to start. Every day I could feel it there inside me, a reminder of who I was. So if you can try and put on a little weight before you get the surgery, it will make it easier. Thank you guys for sharing your stories. Maybe someday we can build some sort of support network for the new kids who have 2 have this done. So that the agony of the unknown can be a little easier. For us, congrats to all who have gotten it out successfully. To those still carrying it, stay strong, it only gets easier from here.

  59. 59 Austin
    September 11, 2012 at 12:40 AM

    I’m 15 I had the surgery done by Dr. Losasso two weeks ago…
    The pain is totally worth the result and I can already feel myself breathing better. Plus it looks better! :)
    If you are considering it I would recommend doing the procedure. Just make sure you have a comfy recliner at home!
    -Austin

  60. 60 Melissa
    September 15, 2012 at 9:34 AM

    Dawnangel63…
    I’m so sorry to hear about what happened,,,,how long ago was this? My doctor said that they never used to use camera’s to insert the bar. I’m hoping now with more experience behind this procedure the risk of death has decreased?
    I am a 29 year old female. My Haler index is 5 and considered severe. It is pinning my heart against my spine and causing me pain in my chest and in my ribs, front and back. It also effects my breathing and makes me tired all of the time.
    I have had it all my life and was embarrassed by it too. With the right precautions you can hide it as a girl. It’s not like we walk around shirtless. It’s always a little more noticeable in low cut shirts, and is annoying to find appropriate clothes to hide it, especially swimwear. That being said I would never get the procedure done for cosmetic reasons alone, Although I understand why some do. It is the medical issues and pain that make me want to do it. And the fact that the doctor advised me I should.
    I saw a series of doctors and was referred to one that told me I needed the surgery. He said I will be scheduled sometime in the next 6 months. He has performed many of these procedures and studied with Dr. Nuss who invented it. I have full confidence in him. He says he does aprx 25 per year, all successfully. I agree the right experienced doctor is important.
    I have three children ages 3-8. Each pregnancy my PE got worse. I believe from the pressure under my ribs, from the babies, causing my dip to go in more. I had mostly normal pregnancies, but pain in my dip and my organs moved around differently causing me to throw up more at the end of the pregnancies due to no space for my organs to move around when the baby was larger. Every time I ate I could feel it start to come up, right away, not because of nausea but rather no space.

    I live in Canada and it is FREE here, so I feel very fortunate.

    I also looked into breast augmentation as an easier surgery (before I realized I “needed” the nuss) They said there is a risk of breast loafing, also known as uni-boob with PE patients. It is also free in Canada for this surgery if you have PE. It’s considered a deformity, and corrective, not cosmetic.

    I hope my experience helps others. I will post an update after the surgery. I’m also on Youtube. I had a hard time finding females with PE stories, so decided to share my story.

  61. 61 Melissa
    September 15, 2012 at 11:04 AM

    just to add to the above. I am allergic to the nickel in the nuss bars, so have to get a Titanium one specially made for me.

  62. 62 Laurie
    September 18, 2012 at 8:45 PM

    My 13 year old son just had the Nuss Procedure by Dr DiFiore at Cleveland Clinic. My son had a 3.8 Haller Index. He had problems with exercise intolerance and could not play lacrosse or basketball or run for more than brief intervals without getting severely short of breath. His Exercise PFT’s showed a restrictive component and on the catscan you could see the sternum pressing on his right ventricle of his heart. He also would intermittently experience chest pains. He had the Nuss Procedure on 7/24/12 and had one bar put in. For pain relief he had an epidural catheter in his upper back for 6 days(which is the maximum amount of time they will leave it in). He was also taking IV Valium and Toradol and Dilaudid and oral Oyxcodone). When the epidual came out the 6th day he did fine as long as we kept him on a schedule with oral tylenol, valium, motrin, and oxycodone—even during the night waking him up to take it. After about 3 weeks post surgery he didn’t need the heavy duty valium or oxycodone anymore and just took Tylenol or Motrin once or twice a day until about the 4th week after surgery. Then after that he didn’t need any pain med except on a very rare occasion. He needed to keep taking over the counter bowel medication for constipation while he was on the oxcodone and valium or it would hurt his chest when he tried to strain. Now two months after the surgery he is in school and walking a mile home every day with his friends. He rides his bike also with his friends, but no bike stunts or horsing around for now. I would highly recommend Dr DiFiore and the Cleveland Clinic for the Nuss Procedure. He is very professional and skilled. It is a bit harder to live 3 hours away from Cleveland and go back and forth for the appointments, but it is worth the incovenience to have had the surgery go smoothly at a center that specializes and is a center for excellance for the Nuss Procedure. Few last words of advice—-if the anesthesia team resident rounds early in the morning and comes in and tries to reduce the epidural medication the morning after surgery , tell him “no way”. The norm is to have to go up a little on the epidural medication the first night and following day after surgery. He will check with the surgeon and realize that is true. Also, the pain will improve. After my son insisting the pain was so bad without the epidural that he was going to kill himself if they took it out—the very next day it was shut off and he didn’t even notice it (As long as he was medicated with some of the oral meds before it was shut off). Also, not shutting the epidural off at 4am but waiting until he had already gotten up out of bed and moved around a bit also helped. Also, that kept tapering the dose down.
    Just keep remembering the pain is only temporary and will lessen and finally subside over the next few weeks. He was able to go longer and longer without pain med before he finally even forgot about it. The mornings were when the most pain was experienced with trying to get out of bed, but the rest of the day the pain was much less. A shower in the morning at home really helped my son feel better. Button down shirts also helped to reduce discomfort with getting dressed. Any questions and you can email me at gritsandwings@msn.com

  63. 63 EastCoast
    September 25, 2012 at 12:26 AM

    Any gymnasts here pending or after getting Nussed?

  64. September 25, 2012 at 2:52 AM

    hi im shane and im 14. im really worried about having this surgery. the doc said in order to have the surgery, you must have a concave dip of 2.5-3.0. i have a concave dip of 4.5-5.0. really scary for me. if anyone can give me any advice, please do. im getting it done on oct 18. really worried… thanks for any help you may be able to give me.
    Shane

  65. 65 Chantelle
    September 28, 2012 at 3:01 PM

    my name is chantelle. I am only 13 and i have PE. its really discomforting. i think i am too young to have it done but not sure whether i should have the Nuss or the Ravitch procedure. any ideas?

    shane no need to worry its scary yes but its for the best. xx

  66. 66 Man of Surgical Steel
    September 29, 2012 at 9:57 PM

    Shane,

    I am 41 years old, and have had the pectus bars (2) in for almost 2 years. I don’t envy you having to deal with this at your age. The recovery from the surgery is definitely “uncomfortable”, and you will be laid up for a while afterwards. I can tell you this: I wish I had been offered this option when I was young and strong like you! I am very pleased with the results of my surgery. It would have been nice to have gotten this done earlier when the boost to my confidence would have been welcome. And trust me–it does not get easier to recover from surgery and the like when you get older.

    As far as help goes, there is one thing I wish I had known going in: the pain meds messed up my body temperature control, so I’d wake up sweaty and shivering in the hospital. This was quite painful and scary for me. The nurses I had didn’t know what was going on, and weren’t much help. Once they figured out to give me a dry, warm blanket, I was much more comfortable.

    Hopefully you have one or more parents that can look after you and help you out before and after the surgery. Remember that this procedure has been done thousands of times, and while it is not easy, the risks are extremely low and the results seem to be very good.

    Best of luck, buddy!

  67. 67 Alexander
    October 25, 2012 at 1:22 PM

    My name’s Alexander, I’m a 22 year old Marine. I was lucky and the Marines paid for my entire surgery. I had the surgery done in August 2012. I just got my bar taken out last week. Did anyone else have a rib stick out on either side of their chest and if they did does it eventually go back to it’s original positional position? I didn’t have them stick out before the surgery and I’m hoping it doesn’t stay this way

  68. 68 Kelsey
    October 29, 2012 at 3:52 AM

    I am 17 (female) and had the Nuss procedure nearly a month ago and I am still in a good amount of pain. I was told I would be able to start running again after one month but I’m not sure that is going to be possible considering it still hurts to move. I was also told I could begin participating in contact sports again after three months (I rock climb and play soccer, and like to wrestle around with my friends) My questions are whether or not I will be able to do these things? Also, what can happen to me if I lift more than ten pounds before my three months is up, because I picked up my five year old cousin yesterday and I’m wondering what toll it took on my body, would I know immediately if I had displaced my bar? And when is the average time before I will begin feeling like myself again? When will I be able to jump on a trampoline without discomfort or a risk of flipping my bar? Please answer quickly because all of this is making me very anxious.

  69. 69 JR
    November 4, 2012 at 7:32 PM

    I have had my bar in for 3.5 years. I am a 34 yr old female and now very afraid about getting it out. What is the truth about the pain and recovery from bar removal? What was it like for you? Thanks!!!

  70. 70 Jessie
    November 14, 2012 at 2:43 AM

    When I was 8 year old little girl, I had the surgery done. The only complication I remember having was when my bar slipped onto my lower ribs. I am now 17 and very glad I had the surgery done. I actually managed to get my black belt in karate while it was in my chest!

  71. 71 Bill
    December 5, 2012 at 5:07 AM

    Hi I’m 18 and Just had the surgery although it was just my sternum that sunk the doc gave me two bars, and when I woke up it looked like nothing has changed, two bars and it had not worked, now I’m left with the pain and the same problem, and i dont know what to do ? …and also if I’m allowed to leave a question and hope for it to be , which is I’m having really bad pain in my back down my spine I never had this befor the surgery and is quite unpleasant and also when I breath I feel clicking in my body which don’t know what it is . Other than that cheers

  72. December 5, 2012 at 12:52 PM

    @Bill – what did your doctor/surgeon say? If it really didn’t work it means your surgeon is useless. The bars should come out if the procedure was a failure. The pains and clicks you are experiencing are normal after the Nuss procedure.

  73. 73 Stacy
    December 6, 2012 at 6:31 PM

    My son had the bus procedure and looked immediately perfect / as the days rolled on it dipped more and more he was in so much pain – he then was admitted to out local hospital with. Severe pain and a heart murmer – he has pericarditus but we don’t know if it was related as it is prevellent in boys of 16. He recently was in a car accident and the seatbelt caused it to flip op so it is currently redundant BUT on the brighter side his cavity is not nearly as bad as it was – and the bar is not doing anything so after 9 months he has hope- he is re-scheduled for Monday for it to be fixed and possibly another bar put in – he knows what he is up against and hopes the result is better this time! Will keep you informed! Fingers crossed!!!!!

  74. December 6, 2012 at 6:46 PM

    I’m sure everything will go well, Stacey!

  75. 75 Jake
    December 8, 2012 at 5:15 PM

    Hi, I’m 23 years old and have been doing a lot of research on the Nuss procedure. I’m determined to get it done no matter what I must endure. As a whitewater kayaker I’m constantly in situations where the shirt has to come off. After all this time I’ve gotten pretty slick at keeping my back to people while I pop my shirt on real quick. But I don’t want to have to do that anymore. My friends practically don’t own shirts in the summertime, but I’m guaranteed to be in one. The only thing holding me back is the price of the whole thing. I live in the U.S. so insurance is my only hope, which I currently have none of. However, due to recent politics everyone is going to need it soon so I’d might as well kill two birds with one stone. Here’s my question – what insurance providers have been known to cover this operation? I keep reading that some will and some won’t. And is it even allowed to get insurance and then turn right around and say, “hey, can I get forty grand?” Regardless, I’m set on getting it. If they wanted a million dollars to do it I’d find the money somewhere. I’m ready to stop wasting time on endless thoughts about it.

  76. 76 Josh
    December 10, 2012 at 3:28 PM

    Hey guys, Ive got a few questions as well.
    Im 23 and I have pretty minor PE. Its only on my right side and its a fairly small dip but it bothers me a good bit and Id love to fix it. My main concern is the recovery time. I can deal with the pain but will I be unable to be active for many months? I am strongly considering the military after I graduate (this week!) so I dont want to be stuck not doing anything physical for a year or something like that. Also, does anyone know much about how PE and nuss tie into military service? My PE has been looked at and I was told it was only cosmetic so I doubt that would stop me from joining but what about the nuss procedure? I saw someone post above that the Marines actually paid for a guys surgery?!
    I’m fairly active and really dont want to give up my entire lifestyle for several years just to fix something so minor but on the other hand it does bother me a good bit. If anyone around my age and build (25 130lbs 5’9″) could comment on how the recovery was that would be awesome!

  77. 77 Barman25
    December 20, 2012 at 8:18 AM

    Hey I’m getting my surgery tomorrow, very anxious and I hope it goes well!

  78. 78 Anonymous
    January 14, 2013 at 1:56 AM

    don’t be Scared this surgery isnot as bad as everyone makes it seem its been a month after my nuss procedure and im out driving, going to school and work with just a little discomfort. the pain is only bad for like 3 or 4 days besides that the pain medication helps alllooottt. im 18 Im pleased with my results although I still have significant rib flaring but my doctor said that would go away after working out for a few months

  79. January 14, 2013 at 8:36 AM

    Working out is very unlikely to improve the rib flare. At 18, you should be bracing. Also, please don’t think that because your pain levels are low so are other people’s. it doesn’t work like that.

  80. 80 Stacy
    January 14, 2013 at 1:52 PM

    Hi there this is Jacobs mum Stacy! Jacob is 5 weeks after his second procedure – they did not put in an epidural this time – Jacob’s recovery has been so much quicker this time and he has 2 bars in – probably because the initial stretch had already been done- he is only usin pain relief when needed now not all of the time – results areuch better this time!!! Onward and upward – thankyou for this site – has really helped! Xx

  81. 81 Sean Shapiro
    January 14, 2013 at 4:51 PM

    Pectus dude,
    I have pectus excavatum and one of my lower ribs kinda stick out alot more than the others.. now im going to d othe surgery tomorrow and the doc didn;t tell me anything about it…. will the surgery fix it? and if not what do i do?

  82. January 14, 2013 at 4:53 PM

    Most surgeons will not try to repair the rib flare. You should ask. It may improve as a result of the surgery but that isn’t a guarantee.

  83. 83 Sean Shapiro
    January 14, 2013 at 5:34 PM

    oh ok thanks.. but is it a common thing to people with Pectus Excavatum?

  84. January 14, 2013 at 5:48 PM

    Hi Sean – yes, it seems that rib flare is quite common and often accompanies PE. I know a few PE guys with no rib flare, but they seem to be the exception. Two things that may help are bracing and having very developed abdominal muscles. Work those abs!!

  85. 85 Courtney
    January 16, 2013 at 6:27 AM

    Anyone in Canada had a failed Nuss procedure? I’m curious to know if our health care will cover a second surgery AND if they would allow surgery outside the country. Thanks!

  86. 86 JH
    January 19, 2013 at 4:17 AM

    A question about removal. My 22yo son lives in Australia and had the procedure in Germany over two years ago. The procedure went well and he’s happy with the results. He planned to return to Germany for the removal procedure but, in the meantime, has had other unrelated health problems and is unable to travel, possibly long-term. Is there anywhere in Australia that the removal procedure can be done?

  87. 87 Meghan
    January 23, 2013 at 11:37 AM

    Hey just wanted to stop and say like ur page lots of great info. I have pe and I just had the nuss procedure I am 21 and the surgeon said he could only fit one bar and I’ve had to go for surgery twice because the first time I broke both all my wires and the bar was not attached now I’m in a lot of pain and he said its attached but on the X-ray the stabilizer bar was an inch away from my rib but anyways glad some people’s surgery went great cant wait to get the bar out :)

  88. 88 Paul Burnett
    January 27, 2013 at 4:51 PM

    Paul, on behalf of my son, Conor.

    When Conor came out of his operation the smile on his face said it all, his words to me ” im normal dad”. Then things started to go wrong. After a day the bar had slipped, after discussions with the surgeon it was decided he needed another operation to correct this. The surgeon said he would put in a longer bar and fasten it to both sides of his rib cage, the first one was just fastened on one side. This operation was like the pervious one for results, looked great. After two days and not far from leaving hospital Conor said the bar felt uncomfortable, another xray was taken and it was found that this bar had twisted. This time my son was given two options, take it out and re group, or one last try, this would be keep the bar in, but attach wire or mesh from the bar and attach it to some ribs to prevent it from twisting. Conor decided he had came this far and wanted to give it one last go. I waited for three hours until he came out of surgery, then nurse came along to me and said i could go and see my son, no mention if it had been a success or not. I pulled the curtains back from around his bed, there was my son, with two tubes coming out of his chest with blood pouring out his nose, shouting the bastards have took it out dad. I nearly fainted, took my breath away, 3 operations in 5 days for nothing.

    The surgeon told me that Conor’s chest was just too swollen, and the best idea was to take it out, let things heal and try again in 3 month time.

    My son is now recovering at home, his mind most be battered, what does he do?? try again or live with it?? Anyone without pectus would say leave it alone, but its him who has to live with it.

  89. January 27, 2013 at 4:59 PM

    Paul, this is terrible. The surgeon was inexperienced. That’s the only reason it didn’t work. Contact Dr. Dawn J at Mayo Clinic. Her contact details are on this website.

    http://www.mayoclinic.org/bio/12691089.html

  90. 90 Paul Burnett
    January 27, 2013 at 6:34 PM

    The surgeon said its the first time he had had any problems. He pointed out that the bar goes through a muscle and that holds it in place, but the muscle had split, so the hole was too big, and the bar was moving. He wasnt sure what had caused it, possible weakness in the muscle or the bar had caused it. ( didnt mention the possibility of him cutting the hole too big). Thanks for the link but we live in the UK, may try a different surgeon over here.

  91. 91 becky
    January 27, 2013 at 11:33 PM

    this is a respnse for Paul… pectus dude is right… contact Dr.Jarsosewski with mayo… my son had two sugeries prior and still didnt feel right inside and still in a great amount of pain… back shoulder and left side… his surgeon at the time said it was something he’d have to live with and try physical therapy.. wouldnt even do an xray… note: physical therapy didnt help. My son was so distraught mentally and was so tired of it he just wanted them out. I went looking for a second opinion. The may clinic here in arizona has a thorasic surgeon Dr Jarsosewski. we met with her… they did an xray… she actually listened to Ben try to explsin what he was feeling… she new exactly what was wrong. she does this surgery different than most and 45% if her surgeries are repairs… they dont attach the bars to the side which confines and restricts they use a wire to wrap around the front of ribs to allow for movement and range of motion. she performed bens 3 rd surgery and his chest looks great and in no more pain. he will get them out in three years. He us an avid snowboarder and works out now plus has a job. My son is 19 and has been dealing with this since 16. I would definitely go see this dr. Any questions ask away

  92. January 27, 2013 at 11:34 PM

    Perhaps Dr. Schaarschmidt in Berlin, Paul. He did my surgery and would not make such mistakes.

  93. January 27, 2013 at 11:36 PM

    Thanks, Becky. This is a fantastic response!

  94. 94 Paul Burnett
    January 28, 2013 at 12:09 AM

    Thanks Becky.

    Something to think about. My son has just been out of hospital for two days, still on medication and in pain. When things settle down we are going to discuss his next move. I believe he will try again, which after what he has been through, i find unbelievable, shows how Pectus Excavatum effects sufferer’s. ( if thats the right word).

    Ill be in touch becky

    Thanks

    Paul.

  95. 95 Sam
    January 30, 2013 at 2:37 AM

    Paul. Can you say where the surgery was done. My son is due to have it done in July at a London nhs hosp. Am very worried.
    Thanks.

  96. January 30, 2013 at 5:14 PM

    You should find another surgeon. The bar is supposed to go under the sternum not through muscle. This guy sounds like a butcher.

  97. February 3, 2013 at 4:45 PM

    Dear Paul, I just read what your son went through and I feel really sorry for you all – what a nightmare. A few weeks ago my son Jasper (14) underwent surgery on his severe PE, here in Berlin – by Dr. Schaarschmidt. This was on January 15th, he came home a little over a week ago. The dent in Jasper’s chest had been there from birth. I’m not really sure which ancestors were responsible but for a long time it was simply a thing he learned to live with. In the London hospital where he was born, the attending doctor called it something that would ‘build his character’. We weren’t too worried but still read up about it and kept track of the medical experiences with the Nuss procedure the world over. The dent in Jasper’s chest became deeper as he got older, so five years ago we first visited Professor Schaarschmidt from the Helios Clinic in Berlin Buch – we had moved to Berlin in 2001 and after seeing the professor and reading about him, we realized he was one of the few absolute experts in this field. Originally a heart surgeon, he so far performed about 1300 Nuss surgeries and improved the original technique on several accounts. In 2008 Schaarschmidt told us that he preferred to wait with surgery until Jasper’s body had matured further, minimizing the risk that the dent would reappear after the bar would be taken out. In 2010 we went again as the dent had become really deep, and it became clear that Jasper needed to have surgery at some point, because his heart and lungs didn’t have enough space…. Jasper was eleven at the time and the professor told us to wait as long as possible. Last November we went to see the professor for the third time and right away he told us it was time to have the procedure done – as soon as possible. The dent in my son’s chest had become 12 centimeters deep, which is really severe or ‘sehr ausgeprägt’ as it is called in German – at the deepest point there were only 2 centimeters left between his sternum and spine. We have always been impressed with how Jasper dealt with his awkward looking chest – he didn’t seem to mind to take off his shirt at the beach or swimming pool, even if people openly stared at his chest. Of course the kids in school asked about it and some made nasty comments, but he seemed to take it all in his stride, The last months Jasper noticed that he was out of breath sooner and more often than others, and his back and chest started to hurt. The doc’s comments didn’t come as a surprise therefore; it was clearly something that had to be done, or my son’s life expectancy would be decreased by about 15 years. In December we went to see a range of doctors for his pre-op tests, literally collecting data: blood values, allergy test results, MRI scans, CT scans.
    On Monday January 14th Jasper took his bag of results and checked into the hospital. The next day he underwent the surgery. Including the time the medical team needed to put the epidural in, the operation lasted three hours – as prof. Schaarschmidt called it on his visit the evening before, he “likes to take his time.” In a different blog or post I might write more about what happened afterwards (and is happening), but suffice it to say that Jasper has made a good recovery so far. The pain is there, but bearable. He already went to school to see his friends and pick up his report card, and even went to the cinema… He will start physical therapy tomorrow, and has cut down on the initial pain medication a great deal, although he still needs a couple of tablets every day. While Jasper was in Berlin, he shared a room with Dimitri, a 22-year old from Australia. I believe more than half the patients in Berlin come from abroad, with a large number of those actually having their prior PE-surgeries fixed by professor Schaarschmidt. The professor claims not to have had one single case of a shifted pectus bar in all those years. We have seen nor read about any results to the contrary and generally feel extremely lucky to have landed with him in the first place. I can only recommend him for your son, Paul, and sincerely wish him all the best!

  98. 98 Paul Burnett
    February 6, 2013 at 9:51 PM

    Thanks Annemieke.

    Its been a tough few weeks, Conor has had his stitches out and is recovering well, just slight pain across his rib cage, looking at going back to work next week. He has been through hell and im not sure if he can come to terms with whats happened. His chest is back to the way it was prior to his 3 operations, however he seems to be more open and showing his chest off to us, which he was to embarressed to do. Possibly he has came to his own conclusion, that he is stuck with it, so may as well show it off and live with it.

    I have discussed with Conor the other surgeons and the possibility of trying again, but i think the damage has been done, I dont think he can go through it again.

    Paul

  99. 99 Paul Burnett
    February 13, 2013 at 8:11 PM

    Sam,

    The surgury for Conor was done in Newcastle upon Tyne, The Freeman Hospital.

    Paul

  100. 100 Aaron
    February 20, 2013 at 9:45 PM

    Has anyone had any experiences with Dr Kirk in Glasgow?

  101. 101 Cheyenne Panada
    February 24, 2013 at 12:13 PM

    I’m a 14 year old female from America. I just had this procedure done 17 days ago. My pectus was very severe I was a 6.8 on the Haller Index. It was as deep as my middle finger and I could put the bottom of a pop bottle in it. I was diagnosed at one year old. For the last few months of my eighth grade year, and my whole freshman year so far I haven’t been able to participate in sports and I wasn’t allowed to do PE because my breathing was so constricted and my heart was working too hard. My heart rate was 190 at rest. A year ago I started the journey of all of my pre op appointments. Cardiologists, lung specialists, surgeons and everything else. I have lived with PE my whole life and I made the decision myself to get the operation. I was in the hospital for a week. The pain was TERRIBLE. Walking was a hard task, I had to go slow. I couldn’t get up by myself, an still have a hard time doing so. Coughing, laughing, and sneezing just a tiny bit brings tears to my eyes still. I’m still on pain medication. I had an epidural and am so glad I did. What I got through the epidural was 10x stronger than morphine. The pain is still pretty bad but I try to be tough for everyone. What bothers me the most is how much the bar sticks out of one of my sides. But it’s definitely worth it!!! My ribs look completely normal and I’m so so happy. My surgeon is the top recommended surgeon in America for this procedure. Dr. Irish is his name from Iowa. He is the most friendly and polite I know! He was straight up with me and he told me it would be the worst pain I’ve ever experienced and I respect him for telling me that. I definitely recommend having the nuss procedure done if your PE is severe as mine. Yes, it’s lots of pain but it’s all worth it. My bar comes out in 3 years. It’s rare to find other girls with pectus so if you are one and have any questions let me know! Thanks.

  102. 102 Fernando Murcia
    May 18, 2013 at 3:00 AM

    Hi. Where can find information about posoperative cares to Nus procedure? Thanks a lot.

  103. 103 Anonymous
    June 1, 2013 at 5:47 AM

    How much does this operation cost

  104. 104 AR
    June 7, 2013 at 12:57 AM

    Hey, thanks for this site and everybody’s comments, stories, and experiences.
    i was wondering if any of u with ur insight and experiences could provide some suggestions? advise? what do u think?
    i’ve got a brother with pectus excavatum.. he’s only 12.. turning 13 in a month.. but its not that minor.. it’s very obvious (in appearance). he says he doesnt have pain and plays soccer A LOT. we went to the childrens hospital and the doc there said its not life threatening, but it worries us alot. Its been getting more deeper over the past year, and it seems to be getting worse..
    what do you think?
    we’re thinking of surgery, but is now, at this age, too early for the nuss surgery? we don’t want a regression to occur. one surgery in a lifetime is already plenty..
    would a chiropractor help? has anyone tried that? has it heped?
    Thanks

  105. 105 Anonymous
    June 11, 2013 at 1:50 PM

    My daughter had PE surgery at King’s Daughters’ Hospital in Norfolk, VA. Her chest was very deformed and we were happy to get this treated. The post op pain was extreme. Two weeks post op she was back in the hospital with pneumonia, fluid in her right lung, fever, a UTI and a chest tube. She has had other medical problems ? related to the surgery and subsequent pain – mono, UTIs, kidney stones, kidney infections, major depression and her weight one year after the surgery was 77lbs. She had pain for almost one year following surgery. Her remaining high school years were a wash- she had to homeschool. This week she has her bars out and I am nervous to see what will happen afterwards. Even with all that , she would still want this surgery. Her chest looks beautiful.

  106. 106 Anonymous
    June 20, 2013 at 7:52 PM

    The originator of this article summed it up perfectly in claiming that the Nuss procedure was like the “Trojans invaded Troy”. My 15 year old son had the procedure done one week ago yesterday (12 June), and he is just now coming around from the pain and pressure that resulted from the surgery. He was a 5.8 on the Haller Index, but within hours of the surgery had the most perfect looking chest I have ever seen. The doctor and his staff claimed that the surgery and the results were as text book as they have ever seen. This of course made us very happy.
    His complications from the Pectus Excavatum prior to the surgery were minor, but the condition was clearly getting more severe, and we, as well as he, worried about increased complications in the future, and figured now would be the time to correct the condition.
    So we are in a good place now, but believe me when I say that the memories of last week were not so good. It was like we made a visit to hell and we are now back. It was like a bad dream that we have finally awoken from. The memories were like surreal flashbacks that seemed to have happened to someone else – because how could we possibly be where we are now after having gone through that?
    As much as we tried to prepare ourselves, nothing could have set us up for what we went through short of living it.
    For a time after the surgery, while still in preop, we were not allowed to see him, because they were frantically trying to bring down his pain which was excruciating. This went on for beyond what was the average time and it broke our hearts as we sat in the waiting room helpless. Finally, they were able to get the pain level under control and moved him to his recovery room where we were able to be with him.
    So for the next three days he basically was in a drug (and anesthesia) induced sleep. When he was awake, all he did was hit the morphine button until it reached his vains and he went back into sleep mode. He did not eat a morsel of food through this time, and then late on day three into day four he began to throw up uncontrollably and with regularity. This aggravated his chest immensely and my poor son was miserable beyond our wildest anticipation. He felt as if an elephant was sitting on his chest throughout and struggled to take deep breaths which is not a pleasant thing when you are vomiting.
    Anyway, late into day four they pulled back the pain narcotics, and gave him straight ibuprophin and valium. By late day on day five he had a full bowel of pasta and had his first bowel movement, and they then sent him home.
    He lost almost ten pounds through the ordeal and looked sickly. But now on day eight he is eating well, is completely off narcotics, and is starting to move around. We have our son back!
    Anyway, we all agree that we would do it all over again and have no regrets; however, we would not wish this on our worst enemy. Hopefully there are no movements with the bar and we can have it removed in three years, and with no additional complications. My son looks great, feels better, and will soon be feeling great and we are so happy that the worst is (hopefully) behind us. Thanks very much to the person who initiated this page and to all of the people who contributed with their comments. Best of luck to everyone who goes though this. Our prayers are with you…

  107. 107 Julie
    July 20, 2013 at 12:37 PM

    I had this done last year on April 20th. I was 13. I had an amazing doctor! I recovered we’ll but I still have intense pain just sitting around, stretching, exercising, or pretty much anything. It will randomly get worse. And recommendations?

  108. 108 Long Road
    October 21, 2013 at 12:40 PM

    Wow, these comments have been amazing! My son Kacy is twenty and had a single bar with one right hand stabilizer put in last April to correct a 4.7 Haller. It has been 6 months … And now he is faced with 1) repair 2) deal with the daily pain, immobility, no side sleeping and flexing of the bar side to side, or 3) early removal. In which case the chest will most likely return to pre surgery condition. At this point he has been able to control the pain with marijuana (legal in Wa. state), and although this is not ideal – it has kept him from the narcotics.
    For a bit of history … After the surgery and long day I went home. That first night post surgery the night nurse stood Kacy up to get a weight check. I am sure this was not clarified clearly with in the Dr.s orders and should not have happened. Was this when the bar took its first little shift? After 6 days of hospital life he was ready to make bail. Just a few hours after being taken off the minimal amount of automatic drip of Dilated he thought he was ready to head home. Against my better judgement we attempted the next leg of our journey only to be back at the ER at 3am in severe pain. His Blood pressure was 192/68 and sweating profusely. NEVER have I seen such a courageous young man. Kacy remained in the hospital an additional 3 days.
    Three months post surgery he crossed his first major disappointment. He realized that he was not anywhere near being able to go commercial fishing with his father in Alaska. The followup Dr. apt confirmed for the first time that the bar had indeed shifted 5* – with only a hint of ‘maybe correction would be needed’. At the time the Dr. told him that soon he should begin to feel the bar stabilizing to the point that he would be able to sleep on his side and not feel it move so much. With that ray of hope Kacy pressed on.
    With pressure mounting financially for him, he decided to attempt working at something that would bring in a bit of income and also allow him to stretch himself to the limit of what he physically could do. All the while wishing he was in Alaska. The job has clarified his limited ability as well as increased pain level. Back to the Dr. for the six month post surgery visit.
    At that visit the Dr. told us that yes, it appears that the bar has shifted once again, and we are faced with the 3 choices. When I asked the Surgon what he would do if it was him or his son… he said reluctantly – that he would probably take it out. Not one of us in the room would be able to say that we were not disappointed with the results. It would seem that the last six months were for NOT.
    Now with the end of the year approaching fast and facing new year deductibles with insurance, Kacy realizes that another $5,000 deductible is out of the question – so a decision has to be made.
    The pain of the initial surgery and subsequent pain is still tormenting him. The thought of going another six months without work and having to rely so heavily on family members to carry him financially is admirably bothering him. The remembrance of being short of breath, heart palpitation and discomfort when doing hard physical work is the reason he went down this road.
    I am not sure what his final decision will be, although I continue to pray for wisdom and guidance on how to encourage him as the next chapter is one yet to be lived.

  109. 109 Talitha
    October 31, 2013 at 9:19 AM

    My son will be seeing his surgeon next week for a discussion of this procedure. I have read through each post on here and have not read anything about this procedure being done on a patient with a congenital diaphragmatic hernia. Anyone have any experience with this? We have already been through three major hernia repairs.

  110. 110 caitlin
    November 17, 2013 at 1:15 AM

    Hi, I’m 13 year old (female) who is considering having the nuss procedure. My brother had it 2 years ago and is having it removed in the summer of next year. I wanted to know what are the chances of complications happening after the surgery. Mine is moderate about an inch deep but my brothers was the worst the surgeon at Birmingham Childrens Hospital had seen. I am being referred to him by my GP as my mum told the surgeon about it at one of my brothers outpatient appointment. I would like to have it because of my self confidence but they always said it could effect you lung capacity and I do find it hard to take a deep breath. Im not too scared about the pain because I saw how well they coped with my brothers pain. I know that it will be hard to move around and to have showers but I was also wondering how long it would take until I could do sport again as im quite sporty.

    Thanks
    Caitlin :)

  111. December 12, 2013 at 9:04 PM

    Just had the Nuss done in Denmark at the age of 26. The results are awesome and the recovery is very fast. Like you mentioned yourself there is little awareness on the topic I came to the same conclusion – making a blog about that in my language might be beneficial to some people – so I made a blog in Bulgarian and put yours as a reference.
    Thank you for creating this one though – it surly offered me big help!
    Now looking forward to see the world after I have fully recovered. What a life would that be!
    All the best!

  112. 112 Worried Mom
    December 13, 2013 at 6:47 AM

    My 13 (almost 14) year old son had the Nuss procedure completed on 12/9/13 – 3 days ago. His Haller index was 5.8 and he was having chest pain and shortness of breath after running a quarter mile in PE class. He had one bar placed and it is still in correct position, but the pain as been horrible. Nothing could have prepared us for this. We read everything and thought we were prepared, but unfortunately not. He has an epidural in which they are cutting back on and trying to get him on oral hydrocodone. It has been a living nightmare as I watch him cry out in pain. I feel utterly helpless and he is so depressed. Any advice/suggestions/help would be appreciated.

  113. December 13, 2013 at 8:48 AM

    I’m sorry he is experiencing this level of pain. Why don’t the hospital have it under control? It’s their job to manage the pain!!

  114. 114 Anonymous
    December 13, 2013 at 9:15 AM

    I understand what you are going through. My son had is bar(s) put in two years ago…his first surgery was very painful and you don’t know what to expect. He would cry out for me to have them taken out. But he worked through it and you have to work through it with him. Muscle relaxers helped and then we would switch off with a heating pad and then ice. I would ask to switch him to oxycontin…not oxycodone or hydrocodone…not enough to stop pain but the oxycontin seemed to be better until about 6 weeks out. My son had to have two bars put in eventually because the depression moved the first bar. You pretty much have to weather through it….but he’ll get through it. It will get better. The wiening off the epidural is hard… They need to give pain meds before its needed to keep the pain at bay….and muscle relaxers along with.

  115. 116 Anonymous
    December 13, 2013 at 10:21 AM

    This is one of the roughest spans of time in the procedure recovery. You just have to take it day by day. I was a 13 year old female at the time of my procedure and I ended up throwing up everything I ate for six days on top of the pain. It is huge amounts of pain and all I can do is promise you that the days you’ve gone through are the worst of them all. What I can say for me is that five years later I could tell you that there was pain but my brain has blocked out all memories or feelings. So though he’s feeling it now he may not be burdened with the excruciating memories. It will end. It feels like a nightmare, but that nightmare will not last forever. Be there for him, keep him distracted and encouraged as best as you can. You just stay strong dear and take it one day at a time, try to get some sleep because your attitude and the way you go about it can be really encouraging for your child. Show him hope and peace of mind as best you can, give him a model on how to approach the experience. Good luck. I know this is the worst week of your life but I promise you it will get better and so will he!! If there is any way I can support you please let me know. You aren’t in this alone we’re all here for you!! Also P.S when they say the surgery to get the bar removed is better they are not lying it is NOTHING like this it is not traumatizing the way this one is. If all things go well you will only ever have to go through this experience ONE TIME right now, and you’re already nearly halfway through the worst part. You just keep going

  116. 117 Anonymous
    December 13, 2013 at 10:34 AM

    You’re response bring tears to my eyes. i am a father of a son who had it done and what you describe is exactly my experience and recommendation to others. It’s funny. My son downplays the procedure now for those who ask and I chuckle to myself when he does so because he has clearly moved past and forgotten his/our trip to absolute hell. Kids are resilient both psychically and mentally i guess. i however am not so resilient and still have nightmares. He still has the bar in BTW. We aren’t through/done the whole ordeal yet… but he does look/feel great now…………..

  117. 118 Anonymous
    December 13, 2013 at 11:28 AM

    I understand completely. My dad took the experience very very hard, I am his only daughter and he is very protective and it killed him to watch it happen. As the patient, we’re on so much medication that often it does blur out our memory of the event, sadly there are no amount of pain meds that can take what you went through away. Just know that getting it out is NOTHING like getting it in. He’s going to be up and around before you can blink. It is an ordeal but you’re going to get through it! I’m so happy to hear that he’s doing well now. My surgeon let me keep my bar when he took it out, and that was one of the strangest experiences of my life, to hold the little piece of metal that had put me through so much. It was that last reassurance that it was DONE. I was only out of school for a week, that’s it! The worst part is over, sir.

  118. December 13, 2013 at 11:52 AM

    I can confirm that removal is a completely different story. With bar insertion I was on pain medication for 8 months. With bar removal, it was only one week!

  119. December 13, 2013 at 11:54 AM

    Thank you. I’m so glad my story was helpful to you!

  120. 121 Worried Mom
    December 14, 2013 at 2:27 AM

    Thank you everyone for your responses. Today is a better day. There is improvement – he is eating and beginning to move again. They are slowly weaning the epidural down today. We hope that we will be able to go home in about 2-3 days depending on progress. Is there a difference in the hydrocodone versus the oxycontin? They also have him on flexeril 4 times per day. We have a recliner at home, but do you think it would be worth investing in a bed wedge system? They have one available at Relax the Back store for $250, but wonder if you have any insight into if it is worth the investment. Again, I cannot thank each and every one of you enough. It is sol helpful to have the support!

  121. 122 Kat
    December 21, 2013 at 6:00 PM

    I’ve just had my PE repaired under Mr Goldblatt at Melbourne Private Hospital. It was a 6 day hospital admission. I had IV pain relief and an excellent anaesthetist who works well with Goldblatt. No epidural. The surgery and hospital stay was covered by my private insurance. I have a good cosmetic result. He used a titanium bar with stabilisers. My Haller Index was 4.4 pre op on CT. I am a 32 year old female and would recommend Goldblatt for patients wishing to stay local/in Oz. The staff at Melbourne hospital are all amazing too (only downside is no single rooms and hospital food is crap). Would be happy for people to contact me if they want more details. Cheers ;) k

  122. 123 allan
    January 8, 2014 at 7:18 PM

    Hi I had PE in jan 2004. I was 16 at the time and went what I thought at the time well.
    was very painful at first.
    3 months after the surgery I was taken back into hospital with chest and breathing pain.after checks it turned out I had pericarditis with 1 litre of blood stained fluid around the heart and lungs.they drained it off and was realised from hospital after a week. I didnt have no other follow ups after leaving hospital.
    9 years later in jan 2012 I started to get breathing problems more often so went to gp around 5times in 2012 and they didnt do anything.just let me leave.
    in nov 2012 my girlfriend rushed me to hospital because couldnt breathe.after tests the hospital realised my pectus bar had gone into my heart and believe it migrated 9 years ago around time I had the fluid around heart.
    They had to operate straight away which was a 10hour operation which im lucky to be alive now because if didnt go into hospital I would of died due to bar cutting all way through heart.
    To this day the hospital have not said why the bar had come loose.just said its one of them thing but I suggest they are trying to cover it up.
    So anyone having PE please get bar removed early as possible and not left in for 9 years like me.
    to this day if I didnt go into hospital I would be dead or bar still inside

  123. 124 ivy
    February 10, 2014 at 3:12 AM

    All of these posts are really inspiring.

    I am 19 years old girl and I first noticed my PE in 7th grade when my family doctor heard heart murmurs. They did an ultra-sound and found nothing wrong. I’d say my PE is pretty moderate, but I’m afraid my problems will get worse as I get older. I feel pressure in my chest very often, almost everyday. And I barely have any stamina when I work out. I get tired very easily. I also have trouble breathing sometimes. My parents have always brushed it off because I have some family members with PE and they’re living fine with the condition. I’ve been doing some research about Nuss Procedure lately and I am really considering getting it done. Not only is it affecting my health, I am also really insecure about my deformity. My parents are finally taking me to the a doctor to talk to about the surgery. Will my insurance cover this surgery? Because i know that it is pretty pricy. Also, who is the best surgeon that has preformed the Nuss Procedure in America? I have no idea who to go to. I hope I’m not at too old of an age to get the procedure done. I want to get it done this summer. I also hope that I recover quick because I am a college student and I do not want it to get in the way of my studies.

  124. 125 Ard
    February 24, 2014 at 1:37 AM

    Hi Ivy,
    There are several surgeons mentioned at this site who are linked to the CHKD Hospital in Norfolk, Virginia.
    The are the best you can get in the States i think.

  125. 126 KellyM
    February 25, 2014 at 3:18 AM

    Has anyone had or known anyone to have the Nuss Procedure after open heart surgery?

  126. 127 Andy
    February 25, 2014 at 12:05 PM

    Thanks for all the info. I originally wanted this done back almost 20 years ago and was told it could not be done.

    I am 32 now and have shortness of breath/still very self conscious about it. Anyone have info for surgeons who will operate on adults in Ontario?

  127. 128 Concern Mom
    April 4, 2014 at 7:33 AM

    I have watch my son chest sink inward over the years: with major changes in last 2 years. We are now looking to determine if its affecting his health (will insurance pay for it). Majority of the symptoms described here he has: I can place my full fist inside his chest: impression is about 4.5cm deep but is 9cm to 8cm in circular shape (but that is with my tape measure).

    I worry that if he has the procedure that I would be ruining his teen years but if it does not occur then may cause other medical issues: we have done a echocardiogram and Lung function test (because I insisted not because Doc wanted to do it): I am told its only a cosmetic surgery but I am beginning to think otherwise.

    Can anyone tell me what the standard recovery time? During the summer he loves to travel with his dad and I do not want to take this away from him. He will be 16 in few months.

  128. April 4, 2014 at 1:24 PM

    For many people it is not just cosmetic surgery. Most GP’s are absolutely clueless. If you can place your full fist inside his dent then it’s not just cosmetic. Trust me. His heart is being squashed up against his spine or at least being displaced. Talk to a thoracic surgeon. Contact those I’ve listed on this page.

  129. 130 Jeff
    April 4, 2014 at 1:46 PM

    IF you are going to do this. Now is the time. His age is ripe. If you go through with it, he will be “turning the corner” at 4 weeks. Out of commission from vacation/travel for 6 weeks. If things go well, and most of the time it will, outside of physical and emotional pain, this procedure is the real deal, but it is no joke either. Just try and prepare yourself mentally because you will need it. When I say for you to prepare yourself mentally, the reason i say you, and not him, is because he can never prepare himself for this, just needs to do it. He won’t remember it the way you will. If it is anything like my son, it will be a blur to him, and he might even tell others after the fact that it was “not such a big deal”, but that will be a mental block from the drugs — which is probably a good thing at the end of the day. Lastly, just remember THE most important factor in doing this, IF you are going to do this, is, doctor, doctor, DOCTOR.

    If you leave me a way to contact you further, I will assist you the best I can based off of my own experiences.

  130. April 4, 2014 at 1:47 PM

    Could not smarter more, Jeff.

  131. 132 Teri Blalock
    April 4, 2014 at 6:52 PM

    My son had his bar placed 2 yrs ago and it looks great. We had a great surgeon in Michigan my son also had a chest you could fit a fist in and it was pushing on his heart. It is a long 2 months of recovery but he went back to doing all of his activities including football, wrestling, water skiing and many more things. This June they will remove it. Make sure you have a surgeon that is very experienced and you and your son are comfortable with do your research

  132. 133 Anonymous
    April 4, 2014 at 9:22 PM

    If it’s only cosmetic and is not effecting his health I’d say be very cautious. It is intensely painful. Yeah they’ll give you medication, yeah you’re in the hospital, but there is nothing that can truly take away the fact that there is now a metal thing inside of you. It took me the entire summer to recover. It was a very life altering experience. If he needs it for breathing and heart function do it! But if it’s just cosmetic I’d be wary about going through that.

  133. 134 allan
    April 5, 2014 at 1:50 PM

    Has anyones metal pectus bar came loose and migrated into the heart?
    Mine did.just seeing if anyone else has

  134. 135 Brett V.
    April 5, 2014 at 4:27 PM

    I had the Nuss procedure done by Dr Barry Losasso at Children’s Hospital in San Diego, California 3 years ago, a few months before my 15th birthday. I had to go in for a 2nd surgery almost right after due to bruising or something, but there were no other complications. Cosmetically, there was a huge improvement in my chest. The first week was extremely painful, the worst pain in my entire life. The next few months hurt very bad aswell, but much much less than that first week. The next 3 years weren’t exactly trouble free but it went alright. Sleeping was pretty hard, i slept propped up with pillows for a year after. One thing is that even now, the muscle on my outer pecs is very disproportional to my inner and upper chest muscles from working out prior to the surgery, and no matter what I do I can’t seem to target my upper and inner chest, so its stayed flat so far. Even so, my confidence has improved compared to when I had pretty severe pectus excavatum. The surgery is very painful but Its worth it if you want a normal looking chest. I am anxious to have the nuss removal in 3 days. I turned 18 a month ago and had the bar for 3 years and 4 months. I hope this helps any teenage patients wondering about the nuss procedure.

  135. April 5, 2014 at 5:28 PM

    Thank you so much for sharing your story, Brett. Good luck with removal. Trust me, it’s easy!!

  136. 137 Mom- Cindy
    April 6, 2014 at 4:17 AM

    On the 10th of April 2014 it will be the one year anniversary of my now 21 year old sons Nuss Procedure. Our experience was not the desired result. Post surgery at 3 months, the bar still had not stabilized. The hope of being able to return to some degree of normal activity did not happen. Post Surgery at 4 months depression began to set in as the bar still caused a substantial amount of discomfort and pain, along with the inability to get a full nights sleep. The only relief from the constant pain was self medicating with Marijuana (to avoid addiction to the pain meds) -although not a recommendation! Post surgery at 6 months the decision was made after counseling with the surgeon to remove the bar. Six months for NOT. ~
    Recently we sought a second opinion from another surgeon who is a Thoracic specialist and has also done several Nuss surgeries. His counsel was IF – again I say IF – we move forward, this surgeon suggests the Ravage procedure. He affirmed us in that the initial bar was placed in the optimal position, however there is little or no body fat on this tall lean young man and it appears that there is little connective tissue within the thoracic cavity to have held the bar in place. Praise God it did not cause further internal damage.
    Long and short of it…… This was a VERY painful road to have traveled. Never- was it a cosmetic correction and at this point the initial concerns and discomfort with the back pain have all returned. But now we deal with a Goliath in the mind, as the memory of the intense pain is still very vivid. Will he one day return to the point of considering correction? Only he will be able to decide that. In the mean time he has given up on some very deeply desired dreams of a demanding and physical employment and is trying to learn to be satisfied with a different line of employment for now.
    For us as parents…. There has been nothing like this. No amount of words can express how tremendously hard it is to stand beside a loved one and watch them endure such pain. In addition, only to briefly mention the cost (inspire of insurance) was also a sacrifice, although … wouldn’t any one of us do anything we can to improve the quality of life for our children ;-) God has a plan with my sons future… It is not for us to question. We press on to the greater goal.

  137. April 6, 2014 at 4:45 AM

    My daughter was 16 yrs old when she her op 23/11/2011,02/06/2012 she died,just 17 yrs old, the bar ripped her aorta, my heart goes out to each and everyone of you good luck with the routes you choose …… Do your research xx

  138. 139 Jeff
    April 6, 2014 at 1:27 PM

    Almost one year in, and my son is doing very well. He has been experiencing text book results from the procedure. However, your experiences dawnangel63, just go to prove how serious this procedure can be, and amplifies the fact that it should not be taken lightly.

    That said, i am so sorry for your loss with your daughter, and reading your post hurts my heart deeply. I will think about her, and your family tonight with plenty of sorrow as I lay my head down on my pillow, and i will discuss with my family, and we will prey for you.

  139. April 7, 2014 at 12:23 AM

    Hi Jeff, Thank you for your kind words,I wish your son well,I supported my daughter in her decision for surgery,it meant so much to her to look normal,she wanted to wear the clothes her friends wore,she wanted more than anything to be able to wear a bra n look like a normal woman. We knew the risks but you never expect it to go wrong for you. If only society would except everyone for who they are. The world is such a cruel place ….

    Sent from my Windows Phone ________________________________

  140. 141 Sam
    April 7, 2014 at 3:57 PM

    Dawnangel63 your post really hit home to me how serious this operation is and i can’t express how sorry I am for your loss.
    I have deliberated over posting on this site but really feel that it is only by sharing experiences that a full informed choice can be made. My son at the age of 17 went in for a nuss procedure in June last year at a hospital in the UK. He was so excited to get it done. We never considered any other procedure just thought Nuss seemed the less invasive operation to have. He went into surgery but during the operation we received a call from the surgeon asking us to come speak to him. We were beside outselves with worry. The surgeon explained that he had tried several times to secure the bar in place but due to our sons shaping of his rib bones a secure fixing could not be made and it would be too dangerous to leave the bar in as it could move and slip with dangerous consequences. We and our son when he came round were of course devastated and disappointed that we had gone through an operation for nothing (but so thankful that no risk had been taken and the problem discovered). My son spent the next few days in hospital recovering and discussing other options available. It was decided that they could perform the Stratos procedure on him and he was booked in for the operation 5 days after attempting the Nuss. We deliberated whether we would be replacing one problem with another. i.e a large scar across his chest instead of the dip, but he decided he would have it done. The stratos normally involves securing the chest with titanium bars but the surgeon managed to do it without. I am no expert but I think this is unusual as i can find no info on the internet about it. The ribs were trimmed and fixed in place by wire so no titanium was required. We are now 9 months on and we had the usual pain and problems with immediate recovery (swelling, discomfort and high levels of pain that were all managed). The scar is large but placed under the pecs and with the help of dermatix cream is fading exceptionally well. My son is not self conscious about the scar and is happy to swim with no embarrassment which he would not do with the dip. He is down the gym several times a week and all seems to be well with no bars to remove although obviously only time will tell for the long term results. I can’t help but think it could have been a story like dawnangels if the surgeon had not been so diligent. This is not the first trauma my son has been through as he had leukaemia as a child for 6 years too but even having spent years in hospital he was not put off the operation.

  141. April 7, 2014 at 4:48 PM

    Sam,my daughter had her op in a well known London hospital,they admit mistakes were made,I hope to god no one else has to live through what we live through xx

    Sent from my Windows Phone ________________________________

  142. 143 Sam
    April 7, 2014 at 5:29 PM

    dawnangel63, I wonder if it was the same London hospital. I have talked to my son today about what happened to you and can honestly say that you are in both our thoughts today and always now. x

  143. 144 allan
    April 7, 2014 at 5:50 PM

    I to had a operation in the uk 10 years ago.they didnt wire bar up correctly and the bar came loose and migrated into my heart which has left damage to the heart

  144. April 7, 2014 at 7:28 PM

    Thanks Sam, I knew nothing about PE until my daughter was diagnosed….

    Sent from my Windows Phone ________________________________

  145. 146 Dawnangel63
    April 8, 2014 at 3:17 AM

    Allan,That is awful,Hope you are able to live a long n happy life ….. I miss my daughter everyday,I felt the need to post on here to get across how serious the dangers of surgery are, I am trying to write a book in her memory and to bring PE into the forefront as I never realized. just how many people have it .

  146. 147 Concern Mom
    April 9, 2014 at 6:05 PM

    Has anyone had issue with decrease heart rate with this condition? Last Sunday night my son reported feeling dizzy and “not right”. He was laying flat on his bed. I had just obtained a pulse ox (a groupon find) and checked his O2 it was fine 92% but heart rate was 52 (I also checked it manually and was accurate, thought I noticed a few missed beats but not sure): I had him raise up and drink some water: heart rate went back to 72. He did go swimming that day and did few laps but nothing else.
    I may be over reacting but I do appreciate any insight. What is the norm for this condition?
    As my son has told me “I don’t know any difference” so its hard for him to tell me if he is more tired because he has nothing to compare it to.
    But this is the first time he complained of feeling dizzy and light headed.

    Thanks again.

  147. 148 Anonymous
    April 10, 2014 at 1:46 PM

    On behalf of my son Conor.

    Re my post in January 2013 after my sons failed operations.

    My son is currently in hospital recovering after deciding to try again. This time he has went for the Ravitch procedure. The early signs, the result looks great, but after the issues the last time we are being cautious.

    After what he went though the last time and still went back for more, unbelievable, he has my respect for ever.

    Paul

  148. 149 allan
    April 10, 2014 at 2:43 PM

    Hi.i had p.e in jan 2004 at a uk hospital.went fine until 3months later when i got pericarditis with 1 litre of blood stained fluid drained from around the heart and lungs.
    Didnt even get a ct test or any test to see if the bar was in place still.
    Im not a doctor so didnt have any reason to doubt what they done.
    The nxt 8years were fine until jan 2012 when i became alot of shortness for breathe.i just thought i was getting unfit.
    Went to gp around 5 times that year and they put it down to asthma.i even mentioned it fet like the bar inside me.nothing was done.
    One sunday in november i couldnt even walk up my staires so i went to a + e and there they done tests and realised the pectus bar i had fitted 10 years ago had migrated into my heart.
    Was 10hours of surgery to remove it.which the tricupsid valve had became damaged and still leaking due to the bar
    The past 16 months have been very hard since bar was removed.still have alot of chest pain and breathing problems but the doctors are not doing anything to help this.
    Anyone got any advice or help id appreciate it.

  149. April 10, 2014 at 3:15 PM

    I’m quite shocked you kept the bar inside you for so long. Why wasn’t it removed after the recommended three years? In any event, I strongly suggest you concentrate on deep breathing exercises. You need to expand your lungs.

  150. 151 allan
    April 10, 2014 at 3:21 PM

    I didnt get any follow ups or anything after the fluid was drained. I just assumed they knew best.i wad 16 when got it done.
    the doctor who removed the bar from my heart thinks the bar had came loose when i had the pericarditis so im very suprised no tests were done

  151. April 10, 2014 at 3:30 PM

    Please try to get your hands on one of these. It will help you. http://en.m.wikipedia.org/wiki/Incentive_spirometer

  152. 153 allan
    April 10, 2014 at 3:41 PM

    Thank you i appreciate it.

  153. 154 GnP
    April 23, 2014 at 9:31 AM

    I’ve never considered myself an impressionable or sensitive person but having a PE myself, reading these experiences always fills me with emotions.
    Also it angers me that so many parents and doctors look down on this symptom and ignore their children’s concern. I think every parent reading this blog is such great parent.
    Now I’ve found out this wonderful blog that I want to share some knowledge/feelings and questions about PE, despite my experience is limited since I haven’t had the operation myself yet.

    While most, including myself, agree that optimal age for the operation is right after the pubertal growth-spurt(operation at earlier age is known to be prone to regression), it doesn’t mean that it is necessarily 16-18yo. Individual growth rate must be considered – yes, a girl would physically mature faster than a boy and Asian kids usually reach their physical maturity slower than Whites do. Also some tall and lanky guys seem to have either prolonged or rather late growth-spurt, which can delay their optimal age for PE surgery. Few boys with lanky or skinny build may exhibit extraordinary late growth session, until about their early 20s. So for you parents, I’d recommend you to keep a very keen eye on your kids’ growth rate. You’d want the surgery immediately after your kid’s skeleton is done growing, but while it’s still young and flexible to embrace the dramatic pressure of the surgery. Please be supportive when your kid finds out about his/her PE(I’m sure most of you here will). Listen to their concerns and show them that you take their worries seriously.

    Now to speak of me, I am a 25yo male with moderate PE that is rather wide and shallow. The dented look depresses me as hell for sure, but what really troubles me is the fact that my physical function and performance is hindered. Actually I can live with the looks; no one has ever pointed out my concave chest(mainly because its moderate), and most people live with superficial imperfection. But the feeling of being functionally flawed really brings me down like nothing else. I haven’t made a practical plan for a surgery yet because of a few things. Firstly, I cannot make time for its huge recovery period; it seperates me from normal life for too long. I need to finish my academic course and get a job. Second thing is that the surgery will make me rely on my family(mostly my parents) too much, all physically, mentally, and financially. I’ve had three pneumothoraxes(I think PE is the culprit) and I know how hard a surgery can be for both the patient and the family. It really tired the hell out of us, again, physically, mentally, and financially. I mean, you can always rely on your family, but there are times when you just feel too sorry for them. Lastly, my PE had been moderate so even my cardiothoracic surgeons said that I wouldn’t necessarily need a surgery. However, I began to feel sporadic pains in my chest more and more often these days; that’s why I went googling and found this blog.

    Now I have some questions.
    1. Is there any specific device designed for pressing down your lower ribs? Many people with PE appear to have flared lower ribs, including myself.
    2. How effective is the Nuss procedure for an asymmetric, wide and shallow PE? I’ve heard someone say that its effect is somewhat diminished in such case.
    3. What kinds of exercise can be allowed during the recovery? I understand that intense exercises such as running or weightlifting is dangerous for obvious reasons; I wonder if swimming, cycling, and squats with no additional weights would be ok.
    4. Does two bars hurt more than one bar? I assume I’ll need no less than two bars, since my PE is widely spread over my whole chest.

    I truly wish all of you the best of luck. Do not give up you hope!

  154. 155 Anonymous
    May 4, 2014 at 12:26 PM

    about some of your concerns. My son had his pectus surgery at age 19 at Childrens’ Hospital of the Kings Daughter in Norfolk VA. He surgeon is Dr Kelly. Dr Nuss who developed this procedure is in the same practice as Dr Kelly but at that time he was not doing many of the actual surgeries. My son had a single bar place during Christmas break. He ended up withdrawing from a semester of college because it took him about 6 weeks to recover, but he was very glad he did this. He was had the bar out after 2.5 years. He had now complications from the surgery itself, just LOTS of pain at first, and learning to find ways to get comfortable sleeping. We found a chiro practor that was able to provide massage and adjustments. He started lifting weights about 6 mths after bar placement and went slow at first. He did not play any contact sports like football during this time though. He could tell that his breathing was better right away His chest did not suck inwards when he was taking a deep breath anymore. The flailed ribs sort of smooth themselves out during this time.

  155. 156 Josh
    May 4, 2014 at 1:34 PM

    Hello everyone
    I am a 21 year old male and had the nuss procedure done when I was 19. Though I am already halfway through the recovery process, I still have issues that bother me and I feel like I have no one to talk to that understands what the procedure is like. The pain for the most part is over, but my ribs are occasionally sore throughout the day and worse in the mornings. I had one bar placed and it was surgically attached to my right side with wires.

    The biggest problem I have at this point is I don’t feel the bar is secure, at all. I feel my ribs shifting over it as I sleep, sit down, or even take deep breaths. I’ve noticed my left ribcage is elevated slightly higher than my right and that the bar pushes out my ribs on my sides (about an inch above where the scars are) to where I can feel them popping out. It scares me really, especially when my left side will have my rib popping out 1-2inches. I’ve even had several panic attacks because of this and yet my doctor tells me that everything is fine and not to worry. Has anyone else had similar symptoms to this? I’d love reinsurance from someone who has actually been through what I’m dealing with because I feel so alone & scared.
    Thank you, Josh D.

  156. 157 Becky
    May 6, 2014 at 10:28 PM

    Hi Josh…
    My son had this done at 17 and is now 20…he had to have three surgeries to get it right. Long story short, we finally found a good doctor. She is with Mayo, Dr. Dawn Jarsosewski. My son felt the same thing with his ribs as you do…no range of motion, felt like he was in a cage. He has two bars in so you can imagine. This last surgery he had two years ago this August she took the bars out and put two new ones in and instead of attaching to the side wall of the ribs she attached to the front which allowed movement…more range of motion. No more pain and no rib flaring. Don’t know if this helps…but understand what you’re feeling and there is a solution if you want to go through another surgery.

    Becky

  157. 158 Anonymous
    May 7, 2014 at 6:13 AM

    my son’s bar did stick out a bit on each side. He had a stabilizer on one side and sort of tied to the other side. It was visible for sure. Just the fact that the bar itself is about maybe 1/4 to 1/3 inch thick and the stabilizer also takes up space makes it understandable. The surgery is not necessarily going to make your chest totally symmetric. Actually no person’s chest is.

    My son never did have great slippage problems, like some, but I would catch him sort of adjusting himself to find good positions. I did remember one little complication that came up about half way through his bars in place. He developed a small blister on the suture line. Being an RN this did freak me out a bit. I is thought that some how a tiny piece of suturing did not absorb properly, acted like a little wick for bacteria. This was easily resolved with taking antibiotics.

    It is very normal for you to have anxiety even to the point of panic attacks. This surgery was less invasive than others, but it is still thoracic surgery and taken very serious. Make sure to have a good talk with your surgeon or his staff. Many of the chest wall practices also have social workers that work with the program. Before you go, write down any question you might have and bring the list with you. You should keep the list handy , like a small notebook just for those questions, and when you think of something, write it down, even if it seems non-significant. You don’t have to be overboard on this, but you can know that you will not forget something that you wanted to talk to your doctor about. Just the act of writing the stuff down will be calming to you and give you a sense of power over the situation. If you find that practice does not have the social workers, then go ahead and get set up with a therapist somewhere. Many insurance companies will ok a certain amount of visit, also, if you are going to college somewhere, check with the Health Services on campus, they may have social worker or therapist on staff.

  158. May 7, 2014 at 11:42 PM

    Thank you Becky, it’s good to know that my symptoms are not isolated from other patients. The feeling of being “in a cage” sounds all too familiar and is very draining for me physically. Though I don’t think another surgery Is an option for me right now, it’s something I’ll have to start looking into if things get worse.
    Thanks again, Josh.

  159. 160 Sam
    May 8, 2014 at 1:03 AM

    I read some of the stories on here about the discomfort of having the Nuss Bar fitted and would really like to point out that there are other procedures to consider. As previously mentioned my son had the Stratos procedure as we discovered during his Nuss op that the bar would not stay in place. He has no bar in his chest just a scar that is really faded only 1 year on and is no pain. Just another option to look at.

  160. 161 Deserei Katrina
    May 24, 2014 at 10:16 AM

    Hi Kat,

    You wrote on Dec 21, 2013, and so I hope you are still around!

    Last year, I too was operated on by Mr Goldblatt, and I too am similar in age and location.
    However, my results were different to yours, and so I wondered about your PE’s severity etc and any other particularities, as many have told me Mr Goldblatt is not the most experienced in adult patients, even if the PE is just moderate like mine. So I may need to head to Germany etc for revision…Which, as it isn’t the most practical of suggestions in my scenario, I really just wanted your perspective so I could determine whether it is worth continuing with him, and more info on your pre -op PE etc.
    Thanks so much, and if it’s easier to email, that would be great too!

  161. 162 John Hamilton
    May 24, 2014 at 1:53 PM

    Hi, also in Melb and interested in the reply. JohnH

  162. 163 Tracey B.
    June 12, 2014 at 6:26 AM

    My 13 year old son had a very good experience with PE surgery at the Childrens Hospital of the Kings Daughters in Norfolk, VA. His surgery was December 16, 2013 performed by Dr. Robert Obermyer. His pectus was rated 3.2 on the Haller index. My son was in the hospital only 2 nights (the nurses said this was a record) and was completely off pain meds by day 6. We were totally surprised by speed of his recovery. He is not playing any contact sports, but does just about everything else. He is more active now than before the surgery. He is extremely pleased with the results and does not ever complain about feeling the bar or being in pain. For the first time in his life he is going shirtless at the pool. I wish everyone could experience the same outcome as my son. We are very fortunate to have Dr. Obermyer as his surgeon.

  163. 164 Craig G
    June 14, 2014 at 6:23 AM

    Hello every one. I’m 20 and I had the nuss procedure just over a month ago, pre op I was nervous but anxious to get it fixed I had a rather deep Pectus excavatum and it was putting pressure on my lungs and heart but more than anything else I hated my dipped chest it made my feel like a freak I didn’t go swimming or to the beach or Do anything that would involve removing my top because I was embarrassed by it so thats why I looked into getting it fixed. Everything about the op and its risks were explained to me and I felt reassured enough to go ahead. So anyone who is unsure about anything just ask your surgeon and they will happily explain it to you. Post op the results were instant and they were fantastic. Now it was very painful but you do get given really good pain relief I was given an epidural before I was put under anesthetic but this isn’t suitable for everyone but there are other options for effective pain relief. I’ve had 2 bars put in with support brackets and they will come out in about 3 years time. As for now the docs have told me not to do anything strenuous and take it easy and generally be gentle when doing stuff and allow time for the bars to settle in. For those of you who are wondering how long it will be before you can do everything you used to then its 6 weeks of generally nothing except walking and gentle exercise then after that it will be one step at a time gently introducing yourself back into a normal routine be patient you will get there!!!. Right now the pains not so bad and I’m nearly able to do general everyday movements without a problem but if I do something thats too much the bars let me know lol I’m due for checkups every six months until the bars are removed as the surgeons like to keep an eye on you. If anything changes after the bars are in for example the bars start causing you more pain than usual or if something’s trying to poke through your chest inform the hospital immediately!! As the bars may have dislodged. Right now I’ve got no problems and I’m happy the results I encourage anyone considering having this done to do it. its brilliant its given me confidence and better looks lol. Yes there are risks but they a very small and the advantages outway them by far!! Thanks, Craig G :-)

  164. June 14, 2014 at 3:19 PM

    Not if you die then they don’t,I’m glad it went well for you,my daughter died after having the nuss procedure,she was just 17,I urge anyone considering this procedure to do so with caution,good luck to all of you as a mother of someone who was tormented by PE and the way she saw herself I truly understand but don’t make decisions lightly …….

    Sent from my Windows Phone ________________________________

  165. June 14, 2014 at 3:22 PM

    I am truly sorry for your loss. Every surgery, even minor ones, carry a risk of death and people need to factor that into their decision-making process. That being said, however, death from the Nuss procedure are rare. Again, I am so sorry for your loss.

  166. June 14, 2014 at 3:28 PM

    Thank you pectus dude and i know risk of death is rare but i feel that people should be aware of all risks no matter how small, I’m not posting to scare people I just want people to know the facts. I know how much this op meant to my daughter so also understand what it means to others with this condition.

    Sent from my Windows Phone ________________________________

  167. June 14, 2014 at 3:50 PM

    I completely agree, Dawn. All risks, even remote ones, must be considered.

  168. 169 Pectus guy
    June 28, 2014 at 9:44 AM

    First of all I’m extremely sorry for your loss dawn, and hope this is a very rare occurrence..
    Also I want to say that this website is amazing because it isn’t often that we can hear from others with the same condition.
    Now I’m a 17 year old boy with about a one inch deep pectus excavatum. Throughout my life I’ve had many symptoms that I never thought to connect to the hole in my chest but now I’m thinking it all may be interconnected. For example growing up I’ve always gotten unreasonablly car sick and even throw up on 10 minute drives for seemingly no reason. I have recently had really bad back knee and ankle pain due to poor core coordination, flexibility and strength I believe is linked to pectus excavatum. I’ve always been more kept to myself as a little kid and my parents even got me checked up for my hearing to no avail. I agree with the others that you can’t know how pectus impacts someone unless you’ve had it yourself because it impacts your brain in a way that you may not even be aware of. I have a low pulse of57 which is 10 lower than my50 year old mom. I also have trouble taking deep breaths and find my breaths almost always to be very shallow and if I try to do hard exercise I will get out of breath really fast and even start to feel dizzy and feel like I have to throw up even through I can only ever spit.
    I agree with the person who said that it saps that happiness out of everything because it’s something that you think of constantly not because of the way you look but because the impacts it can have on you physically. It can be similar to being blind or deaf in that regard but maybe not to the same degree.
    Every time I stand up from laying down I get really lightheaded and feel like I. Going to pass out from.
    I am scared for the future because it takes all motivation away because of the way it can make you feel tired all the time.
    I’ve also had really weird gas throughout the past while that might be linked to pectus. It is really warm and unnatural smelling that all my friends take notice of lol.. Thought I was lactose intolerant but again came up empty for answers.
    I am just now starting to puzzle it together that my life may have been dictated by pectus thus far.
    Wlndering if anyone has experienced that same stuff with their pectus throughout their lives?? And also what is my recommended action??
    Anyway that is all and goodnight… :)

  169. 170 Concern Mom
    June 30, 2014 at 6:00 PM

    You are correct the PE can cause strange symptoms. We just received the impression from the Haller index and found that “much” of our son “heart resides to the left of sternum/ siphoid” and there is “compression upon the heart, especially the right atrium and right ventricle”. MJ has always had endurance issues, back discomfort, poor coordination, breathing issues, lightheaded, trouble taking deep breaths, riding his bicycle for more than 15 min and just not able to keep up with other boys. So yes I do agree that any condition that compresses the heart that there are multiple symptoms and when the heart shifts then other organs also have to move which will cause other symptoms.

    We were always told Asthma/ allergies was MJ issue but last night I found an old referral that had the Pectus Excavatum listed: no one told us there were surgery option: just he had to live with it. We are now talking to King Daughters in Norfork.

    Therefore: I would recommend having your PE evaluated with the Haller index and see where you are at: also find a physician that is open to the possibility that this is a real problem.

    You are not alone.

  170. 171 Kerri Sanchez
    July 1, 2014 at 2:14 AM

    Hello, my son just turned 16 years old and has PE, but I have not had a doctor do any tests on him yet. Does the Cleveland Clinic in Weston, FL do this procedure? If so, who should I take him to see? We live in Pembroke Pines, FL.
    Thank you!

  171. 172 Will Hough
    July 3, 2014 at 10:53 PM

    Hi all, I had a single bar placed in in mid October of 2013, the recovery was absolutely terrible due to both of my lungs collapsing, not enough pain killers being administered and discovering an allergy to morphine, I wasn’t my usual self for a good two months. I recently (within the last month) returned to my surgeon for a check-up, he informed me that the bar was having no effect and that the bar would have to be removed early, but he did give me the option to, while I’m there, have the Ravitch procedure (cut down the front of the sternum break the ribs and reform them). Suffice to say I am absolutely terrified! My first visit to hospital was so harrowing that I am unsure if I want to go through it again! Would anyone have any advice as regards to what to do as well as how to speed my recovery after having the bar out?

    Best regards and speedy recoveries

    Will

  172. July 4, 2014 at 9:48 AM

    The bar was having no effect? I’m so sorry Will – but that is due to surgical incompetence. I strongly suggest you contact Dr. J at Mayo Clinic. She may have suggestions for you.

  173. 174 Sam
    July 5, 2014 at 12:44 AM

    Hi Will. I have posted on here before. My son at age 17 went for the nuss procedure but during the op they discovered it would not stay in place and had to removed and the op stopped. 5 days later he had an op called the stratos which I think is similar to the ravitch. The cut is made horizontally. However my understanding of this op is that tendons not the ribs are cut and refixed with either titanium strips or as in my sons case thin wire used. He has nothing in his chest that needs removing and is very happy with the results. Recovery took about a month and he is completely pain free. He was back to the gym within 6 months. The op was done in a London hospital. Just thought it might be worth you researching it.

  174. 175 Gator's Mom
    July 16, 2014 at 10:00 PM

    My son, Zach (19) had the Nuss procedure done by Dr. Lyall Gorenstein at New York Presbyterian – Columbia Medical Center on June 2, 2014. The doctor said the procedure went very well. Since he’s tall (6’2″) and skinny (125 lbs) he needed 2 bars. He stayed in the hospital for 5 days. They managed his pain with a pain pump for 3 days then transitioned him to oral pain meds. He was on Oxycodone then Torodol for a month and now relies on Aleve. He’s complaining of a lot of back and shoulder pain. He went to physical therapy a few times and it helped. My major concern is that he’s very sedintary and doesn’t like to walk or use his Spirometer. We saw the surgeon 2 weeks post op and he said everything was ok and what he was experiencing was normal. We see him again at the end of the month when he’ll be about 8 weeks post op. Any advice for him would be most appreciated although he’s a stubborn young man so no guarentee he’ll listen! Thanks for creating this blog, it’s helpful to so many.

  175. July 18, 2014 at 9:39 AM

    It’s completely and utterly normal. Tell him to do the breathing exercises. It’s very important.

  176. 177 Zach
    July 22, 2014 at 12:22 AM

    That you for this, I’m 17 and dealing with PE. My insurance won’t help pay for any procedure to fix me because they don’t find it severe enough, even though its caused me heart and lung problems as well as sent me to the emergency room for strained chest muscle caused by the deep curve on one side, but I’m saving what money I have for this procedure. My parents won’t tell me how much it will cost and neither set of parents has the money for it. I’m trying to find info on surgeons near where I live and how much I’ll have to pay for it, anything helps

  177. 178 Zach
    July 22, 2014 at 12:23 AM

    I meant thank you, not very good at typing

  178. 179 suzanne
    August 27, 2014 at 6:36 AM

    My son had this operation.His brackets on both sides protruded and almost looked like they were going to come through the skin. He had this corrected after three visits to AE . They took xrays and said he was fine. The bar however was moving around and damaged. Tissue and muscle . He also had infection. He could have died. They have now fixed it after a month of suffering. The brackets do nt stick out anymore. I am really worried about his back. His pain is bad its been over a week since his op to fix. Its been and still is a complete nightmare. His pain meds are Liquid morphine..tramadol..nefopam…paracetamol. .. He is still in pain. . Worried sick.

  179. August 27, 2014 at 8:44 PM

    God I so understand what you’re going through. My son had to have 3 surgeries to fix his bars…he has two in…and the 3rd surgery we found a surgeon that this is all she does and she connected the bars with wire to the ribs in the front instead of the brackets on the side. This then allowed him range of motion where before he was in pain all the time..his back hurt and felt like he was in a cage. He is so much better now and in no more pain.

    Something to consider.

  180. 181 harley
    September 2, 2014 at 9:47 AM

    Hello Everybody, Im 36y.o and had the nuss procedure 3 years ago, Im now 8 days after the bar removal operation and I’m so sad. I passed through all sort of suffering to have it fixed. The surgery was traumatic cus the pain was incredible strong and for 3 months I stayed in hell due the excruciating pain. The bar rollend into my chest days after the procedure and the dent was back a little bit more, and now after I have it removed the PE looks exctaly the same as before surgery. Can you believe this? I don’t now what to think seriously. Im so desparate. I need help.

  181. 182 Sam
    September 2, 2014 at 4:00 PM

    Harley. My son could not have the bar fitted as they found during surgery that the bar could not be made stable. He went on to have the stratos procedure 5 days after the nuss attempt. It’s like the ravitch but the scar on the chest is horizontal. 1 year on the results are excellent. No pain And the scar is almost invisible. He has nothing to be removed and is so pleased with the results. Worth looking at as an option.

  182. 183 alex
    September 2, 2014 at 6:14 PM

    Hi Haley, that happened to me as well. In 2010 I had the nuss bar put in and taken out in 2012. My dent came back like it was never gone. My surgeon was so surprised and because of me he now has the bar in for 3 years. But he explained that it was because the older we get the more rigid our bones become. I had the ravitch done 6 months later. After having both done I’d rather have taken my chances with the nuss the first time always. There’s a reason the nuss is called less invasive. To this day my chest feels sore (where I do have feeling). The ravitch was by far the most painful thing I’ve ever been thru.

  183. September 2, 2014 at 6:19 PM

    Harley, this is devastating. I’ve never heard of total regression after three years of a Nuss bar inside you. What was it like during the time the bar was in place? I simply cannot understand how this is possible and I’m so sorry to hear this. What did your surgeon say about this?

  184. 185 harley
    September 2, 2014 at 11:01 PM

    Hi fellows, thank you for supporting me, the worse part of all of this is that I feel completely alone. Nobody else understand me. People think this is not worthy I shouldn’t worry about it.

    There are some people that dream to be rich or travel worldwide knowing different places, I dream see my chest flat normal. I struggled for this as much as I could because where I live they never performed the nuss procedure before. I was the first patient. I made it happen with all my willpower and commitment. I got in touch with the best doctor in nuss procedure in Brazil and he agreed come to my city and teach other surgeons how to do the nuss. I didnt know that the best one here was not enough in my case. He messed up everything He put only one bar ignoring my age completely. He condenmed me to live with the worst pain I’ve ever felt and I had to bear the suffering with the strenght of all my dream and wishes for almost three months nonstop. When I had no more power to struggle against the pain another doctor came to see me and freed me from the pain with a cocktail of drugs. She was an angel in my life.

    After that, for my surprise, I found out that the bar was not at the right place, it didnt stand the pressure upon it caused by the sternum. And the PE was back a bit. I had three year to make my mind about what to do with my PE that was the time till the removal bar surgery. I got in touch with doctor pillegard in Denmark, and Doctor J., Mayo Clinic, US. Both saw my X-ray and talked to me in order to know the case better, and both said they could fix it with two bars. The big problem was I had to pay for the procedure and it was not cheap at all, very expensive I must to say. I thought: Am I doomed to live with this forever?. I thanked they both for the attention but sadness I couldnt afford.

    Back to my reality, I talked to my surgeon here, the apprentice one, who still taking care of me, and he said, the only thing he could do for me was the ravitch procedure during the bar removal surgery and may be if it was necessary put the strauss bar in. I said no… The result was not what I expected but I could live with that.

    23th august 2014, the bar removal procedure. Another complication, when he was taking the bar off, the ouside part of it what should be easy to pick up had got inside of my thorax bettwen two ribs, making it harder to take out. As a result I had one rib broken and a pneumothorax, which had to be drained after surgery. What means more suffering. The catheter hurt to hell when he put it inside my chest and during 7 days PO My lungs were getting filled with blood and I had to cough it out that was not an easy task cus it hurt.

    Let me give you a picture of how Im now. The pain is not so bad. The bleeding in the lungs stopped. I have one scar due a catheter in front of my left chest above my nipple, not so big. And I have two big scars both sides. And my only option available is the ravitch, which would mean more suffering and more scars in my chest. Can you imagine how my chest would look like if I had the ravitch? I would have scars all over it.

    Today I have an appointment with the surgeon I will let you know how it was

    Ok. Dudes. Sorry for the long text. I’d appreciate any comment.

    Thanks.

    Harley Anderson
    E-mail: fill_br@hotmail.com

  185. 186 harley
    September 3, 2014 at 7:08 AM

    The pectus is really back, I had a hope that it was only in my mind, but the doctor said I was right the dent is back as before surgery. I don’t know what to think. I am devastated.

  186. October 28, 2014 at 2:28 PM

    Hey! I’m a 22 year old female from Arkansas. I had my surgery done at childrens hospital in Little Rock by Dr. Dassinger March 2013. I was his oldest patient at that time. He told me I could go out of state to see a doctor who was more experienced with adult PE. I’m not sure why I didn’t listen. At my first appointment he said that my bar had rotated some but that we would see if it got worse in the next appointments, he said it didn’t. My concern is that I am still in pain. I feel like I never fully healed. I cannot sleep on my side, it’s uncomfortable to sit in one place for very long, and it still does lots of popping and cracking. I can feel the bars all the time they feel strange. Is this what it’s like for everyone else? Dr. Dassinger said that it wasn’t like that for his other patients, but he didn’t have any suggestions for the pain. Do you think I should get a second opinion or is it this way for everyone else?

  187. November 3, 2014 at 12:01 AM

    Go with your gut, If you feel something is not right get a second opinion,don’t ignore anything, Good luck xx

  188. 189 Pat
    November 8, 2014 at 7:18 AM

    My son had the Nuss procedure and Dr. Nuss did the procedure when he was 14 years old. Prior to the surgery he had asthma issues every 6-8 weeks and he was on steroids. He had to use several inhalers. Tim’s lung problems started when he was 1 1/2 years old. Besides the lung problems his heart wasn’t were it should be. He had water around the heart and a murmur. He could not tolerate exercise and would take a nap almost everyday because the PE was so taxing to his heart. The insurance denied the surgery but I insisted that they cover it. Found out later…they denied everything at first…don’t give in..most people do. They eventually covered it. We drove 250 miles one way to CHKD. Dr. Nuss needed to place two bars because his PE was so severe. I was told that after the surgery, his heart went back to where it belonged in his chest. He stayed 5 days in the hospital. He was on four different pain meds but we were able to drive home he stayed comfortable enough to get out of the car every hour. Tim was out of school for three weeks. He had to gradually get off the pain meds but after a month he was only taken tylenol. Tim’s chest looks almost normal. He can feel the bars but he was out playing paintball in three months. Three years later we went down to Norfolk and he had the bars removed. Tim’s chest looks beautiful. His asthma is gone. He is 26 now and he is still doing well. He is never sick. No heart problems. Research who does your surgery. Go to Norfolk if you can.

  189. 190 Zoe
    November 21, 2014 at 6:41 PM

    Hi All, I am a 38 year old Mum of 2 boys in the UK. I have PE and never had any procedure to correct it as it really hasn’t bothered me. I knew I was different from my friends but honestly no one has ever said a mean comment to me about it. My issue is, one out of my 2 boys has it, and I know it’s going to be a whole different ball game for him. He’s 7, totally unaware right now that he’s different in any way, He swims every week at the public pool and again as far as I am aware, no one has ever said anything to him about it. He changes in the changing rooms at school for sports and again, no one has mentioned it. How long will this last? I am afraid to talk to him about it as I don’t want to bring it to his attention. I’m scared for him getting the op, it really worries me. Just wanted to post my story, nothing inspirational and no horror story, just a worried mum who does know what it’s like, as I have it too.


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