Pectus Excavatum: My Tips for Organizing Surgery and Finding an Insurance Cover

Taking measurements before pectus excavatum surgery
Taking measurements before pectus excavatum surgery

I’m currently running a website on Pectus Excavatum and also have the Pectus Excavatum chest deformity and a lot of people ask me for tips on getting insurance cover as well as how to approach the whole surgery situations and dealing with common difficulties with doctors who don’t seem to understand how pectus excavatum affects you and just tell you to get over it and tell you there is nothing wrong with you.

Feel free to comment or ask me questions in the comment section.

Choosing a doctor

This is probably the most important place to start finding a general doctor who you can trust and understands your problems and needs. This is most important because many people run into doctors who have no clue about pectus excavatum and call it things like whole chest and concave area and they will pretty much give you textbook responses to your questions and you will leave there office feeling like you just paid to have the dictionary read to you. 

I have had this many times where I would ask a doctor if there is anything I can do to improve the appearance of the chest or get a surgery and they will always respond with “Don’t worry about it , just live with it” but that’s not the truth you don’t have to live with it if you don’t want to there are so many ways to improve your pectus excavatum including exercise (see my pectus repair hubs) and the most popular nuss surgery procedure.   

Having a good understanding doctor will work in your favour in the long run as it will make getting referrals and convincing surgeons to carry out the surgery much easier and most importantly a good doctor backing you up is invaluable when trying to get insurance cover for the expensive surgical correction procedure.  

Remember like any doctor if you are persistent with them they will have no choice than to give you a referral and if all else fails, contact the specialist directly as I have done in the past and it works fine just remember to work out your game plan just incase the specialist is a little hesitant. From the specialists I have seen I can tell you that they are very welcoming and wont push the surgery on you but will tell you that they will be happy to perform the operation and believe it can help.  

Surgery

The pectus excavatum surgery was long only considered for people with very severe pectus excavatum meaning it caused them real pain, pressure on organs or trouble breathing but now it is seen more of a cosmetic surgery. Which is good when you think about the trouble people went through getting surgeons to agree to do the procedure because know there are many surgeons all over the world doing the procedure.   

With the surgery now being considered a cosmetic one, we have run into the trouble of the insurance companies being very had to convince to cover the costs of the expensive procedure. The key is to make it look less like a cosmetic surgery and more of a necessary surgery but I will talk about this later on.  

Pectus Excavatum Surgery - Organizing the Surgery

So now for the part where you want to organize the surgery, this part will of course be a lot easier with a referral from your local doctor with a note describing your condition and difficulties you experience with the condition (usually heart pains, unable to take deep breaths, effecting fitness levels) that sort of thing. From my experience surgeons don’t need much convincing as It is considered a surgical procedure but for a difficult doctor, specialist or surgeon it is sometimes necessary to make the condition appear worse than it actually is by describing the troubles you experience.

To help support your surgery you should have most of the following including a local doctor referral letter 1- CT Scan of the chest / chest wall 2- Echocardiogram 3- Pulmonary function studies 4- Detailed note from your family physician on any significant past medical problems including your cardiac, respiratory and genetic history.

Pectus Excavatum Insurance Cover

The key to getting insurance cover for your pectus excavatum surgery if the insurance companies are being withholding is to be very persistent. There have been many cases I’ve heard of personally where people have scheduled a surgery and then hear the insurance company wont be covering the operation and having to cancel the surgery and get insurance cover back, this going on forth which can last a while and frankly drive you crazy when you know you or your child need the surgery.

The best way to handle this is to get the doctor and surgeon involved in the procedure of getting insurance some people even get the surgeons to call up the insurance company to give a formal description of your condition and why you need the surgery or get them to write a note to the insurance company. Most surgeons will write a note for you that you can fax over to your insurance company to support your claim but remember the most important thing to support your claim are the list of 4 things I mentioned above and these can be sent to your insurance agency.

Depending on your insurance cover , these sorts of operations will not be covered because they may see them as cosmetic but you can always try and push it to be more of a necessary surgery or at least get partial insurance cover on the surgery.

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Comments 87 comments

David 7 years ago

How much does the nuss procedure cost usually?


David 7 years ago

How much does the nuss procedure cost usually?


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expectus 7 years ago from Land Downunder Author

I believe its around 10k because its such a specialized surgery, but most insurance companies will pay at least some of it if not all depending on your insurance cover and history.


Sandy 7 years ago

David, we just visited a specialist for our son and the cost we were quoted was around $30 - $50,000. $10,000 is cheap. Does this include the 5 day hospital visit?


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expectus 7 years ago from Land Downunder Author

Hi , that sounds very expensive I think the 10,000 was just for the surgery not the hospital stay. But does your health insurance pay for any percentage of the costs? I was told that my health insurance would cover some of the costs which would make it cheap for me or was that 30k with health insurance paying some.

it also depends where you live too,


franklin 7 years ago

Hi, David! My 16 yo son was diagnosed about 2 yrs ago with Pectus Excavatum. The doctor we saw at the time did some research on it because she had never seen an actual case. We did not know he had it until he started going through puberty and started filling out. He has always been so skinny and it wasn't noticable, even to him. We were never told if his was mild, moderate or severe. We had pulmonary and cardiac studies done at the time and they just told us to repeat in 2-3 yrs. He has always had a little shortness of breath with exertion and he gets really tired. Our new doctor told me to research corrective surgery and if we decided to do it, he would refer us to a specialist, but we have to find one. My question is: Is it worth it medically to have it corrected? And what is the least invasive procedure available? Thank you and sorry so long!


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expectus 7 years ago from Land Downunder Author

well franklin regarding your question its really how much the PE is affecting your son's day to day life. A lot of people get the surgery for cosmetic reasons.

The least invasive procedure is the nuss surgery and probably the most popular for PE correction. that being said its not really uninvasive as you are stuck with a bar in your chest for quite a while.

I went to see a nuss surgeon a while ago and he said that unless its pushing on your heart and causing your internal organs harm its not always necessary to have the surgery but people choose to due to the appearance. For me correcting my posture did a great deal to help me breath better , how is your sons posture.

check out pectuslist.com for a list of surgeons around the world and my other hubs I went through how the actual nuss procedure is performed.

goodluck if you have anymore questions let me know:)


jonathon lam 7 years ago

should i go for it ? it looks painful. how long does it last from putting the bar in to the end of removing it ? and wat is the currency u guys are talking about ? i'm from singapore.


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expectus 7 years ago from Land Downunder Author

its up to you jonathon:) I think it was quite a while more than a year i think. check out http://hubpages.com/health/Pectus-Excavatum-Surger... i think it may be on that page.

I was talking AUD but I think the other person may have been talking about USD, it really depends what sort of insurance cover you have to find out how much you will have to pay out of your pocket


CJ 7 years ago

Hi :)

I had reconstructive surgery performed when I was 2yo to correct my pectus. They took the bar out when I was 4yo.

Over the past couple of years my chest has fallen back in a good deal. The last week or so I've been having some scary problems breathing...

I just saw a local Thoracic surgeon and he said surgery wouldn't help me now. he said 10% chance it might even make it worse.

Well I CANNOT live like this. I got a referral for a 2nd opinion in Atlanta, GA (2hrs from my house in Augusta, GA).

I really hope I can find someone who knows what they are talking about.

Have you heard of this before? If your pectus falls back in years later after surgery, will the Nuss not help if performed again??

I had the surgery performed 18 years ago. I doubt they had the knowledge surgeons today have in this area dealing with pectus. There has to be someone who can help me...

Oh and we have military insurance that will cover a huge portion of the cost. The real problem is simply finding a surgeon who knows what he's talking about...


adam 7 years ago

We got the cost of the surgery and the surgery (for me) will cost around $50,000 and we will have to pay around $5,000-6000.


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expectus 7 years ago from Land Downunder Author

hi CJ, I think its quite common for the surgery to wear off and your chest can return to how it was before the surgery the main reason is people neglect the maintenance exercises that should be done after the surgery.

You did have the surgery at a very young age so its possible your growth spurts just ruined the work from the surgery. Did the surgeon he give a reason why another surgery could make it worse?


jameserene 6 years ago

I just want to be normal ,go auround with my shirt off in the summer, lie on my back to get some sun and not worry about who is looking at my chest. Im sure this sounds familiar. Im just realizing that there is something I can do about this and your hub has been the most inspirational to getting it fixed. how has the surgery changed your life?


alfred 6 years ago

Hey! i have a question. do you know of any more doctors in New York that can help me? i have aetna so i cant see the specialist that Dr. Stolar guy. any help would be greatly appreciated!


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expectus 6 years ago from Land Downunder Author

i have not had the surgery as mine is relatively mild but I have seen many specialists about it and discussed the option of surgery and its always there if i want it.

Will take a look for you alfred :)


Ak 6 years ago

Just wondering how do u judge whether a PE is mild or severe? Any measurement?


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expectus 6 years ago from Land Downunder Author

you can just measure it with a ruler for a rough guide or if you want the proper measurement, a ct scan can show you your haller index which is what they use to determine how serious your PE is


jameserene 6 years ago

what is the measurement of the haller index wich determines your pe being past mild?


jameserene 6 years ago

Never mind. The Haller index, created in 1987 by Dr. Haller, Dr.Kramer, and Dr.Lietman is a mathematical relationship that exist in a human chest section obsereved with a ct scan. it is defined as the ratio of the transverse diameter (the horizontal distance of the inside of the ribcage) and the anteriorposterior diameter (the shortest distance between the vertabrae and the sternum.


Johny 6 years ago

Im 41 year old male that has PE, is there any doctor in Sydney that will repair PE, Dr Chard will have nothing to do with older patients, asked him twice in 10 years to fix the problem with no avail.


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expectus 6 years ago from Land Downunder Author

hmm that's no good maybe you should try a surgeon in a different state, maybe in Victoria


Bill 6 years ago

Hi!

Thanks for putting up this site. It is really useful to have all these answers in one place. Im 32 years old and have recently starting chest pains. My symptoms are exactly like what have been described here. Would you know of any doctors in the Madison, WI area who perform this type of surgery? Many thanks1


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expectus 6 years ago from Land Downunder Author

Your best bet would be to talk to a Pediatric Surgeon at the children's hospital of wisconsin , i know its a children's hospital but the pediatric surgeon's may also do surgery's on adults , so its a good idea to find out


isaac 6 years ago

how come you have gone to all this trouble of putting up the blog and seeing specialist and have not gone through with the surgery?

I have my appointment with cardiothoracic surgeon next month. I spoke to a plastic surgeon about prosthetics and decided against it. That was going to cost around 12k, he said the corrective surgery would cost a lot less and that both corrective and plastic surgery are covered by Private Health Insurance as both procedures are correcting a birth defect.


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expectus 6 years ago from Land Downunder Author

well I thought I would blog my impressions of the steps that i went through when i wanted to get the surgery done, by the time i saw the surgeon and had a chat with him I decided that because my sunken chest was so mild I would fix it with exercise, and to be honest I didn't like the idea of having a bar in my chest for 3 years, for some people this is nothing


Lee 6 years ago

If you or a child has it, make sure you get this taken care of while you're young, (under 21 as I understand it). When I was 14 I started having increased trouble with pain in the area of my sternum, but my family doctor brushed it off. He even thought that I had Marfan's but said it was no big deal, I would get very tall and it wouldn't be very noticable. He didn't mention any of the health risks, he was clearly not knowledgeable on the subject in retrospect. He further said that I could get cosmetic repair if I wanted, but that it was a psychological issue, and that I was a nancy-boy if I wanted surgery over the matter.

14 years later at the age of 28 I developed breathing problems. My longs feel sometimes like a paper bag when I breathe in. My back and chest hurt because I now have scoliosis. I'm a runner and was in training. But, now I feel something is very wrong. I can feel my heart beating through my chest and I feel anxious and uncomfortable. I think there's something wrong with my heart. I have an appointment with a doctor to figure it all out. My bones are fully formed so I can't imagine that will make things any easier if surgery has to be performed. I feel like I'm dying and it pisses me off to no end that the matter was always treated so flippantly by my family physician.

I never got genetic testing for the Marfan gene mutation, I never got an expert diagnosis, I never saw a cardiologist, I never did anything because I didn't know there was anything else to do or any risks associated with PE. I trusted the opinion of an idiot doctor. Never get diagnosed for unusual problems by a family physician. They have no knowledge whatsoever. Always seek a specialist.

tl;dr: Get help while you are young, and be persistant, don't take any bullshit, it's not cosmetic (I don't give a shit about how it looks, I even like how my chest looks, the problem is that it feels like someone's digging their heel into it). You will feel like an old and dying man in your late 20's, and that is just not right. It doesn't mean that you have to have surgery but you do have to at least do certain exercises, and you will have to augment your lifestyle. You have to get genetic testing because if you have Marfan's you may have a bad heart and you have to avoid certain activities.


Darren 6 years ago

Hi my son has pectus, at age 12, we first noticed it but did nothing about it. As he is a footballer (Uk) we where well concerned. At age 14 we took him to our GP, he diagnosed pectus, said it will have no affect on his sport and should be ok, we where told to keep an eye on it. Now at 16 we have reall concerns, he is in a position where he can be a professional footballer, due to pectus he is having problems with his stamina and breathing due to the physical intensity of the sport. Do you now if the Surgeory will solve these breathing issues?


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expectus 6 years ago from Land Downunder Author

Hi, it really depends on whether it is a physical or psychological sometimes its hard to pin point as having PE often makes people feel like they have less stamina and endurance than others.

That being said I talked to a few GP's and they do believe that PE can hold you back, and yes the surgery should fix the problem but it takes a long time for the whole process to be complete around 2- 3 years. He could try some breathing exercises try and increase lung capacity there are many athlete's out there with PE , saw a professional American wrestler with moderate PE a while ago and he is very fit. the main concern would be chest pains and maybe the best thing would be to get a ct scan so you can see if there is any danger of squashing your sons organs or preventing him from taking in oxygen.

I know some sports clubs use special equipment to measure the amount of oxygen being used during a game but that's pretty specialist stuff, goodluck :)


wondering  6 years ago

my daughter just showed me the other day that she had an indentation in her chest. Have never noticed it before, she always looked fine but now it shows. Don't have insurance, if I wanted to get insurance would this be considered pre existing and would I be able to get help paying for it if I needed to get it fix????


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expectus 6 years ago from Land Downunder Author

some insurance companies recognize it and others see it simply as a cosmetic procedure so depending on the level of cover you take out, will decide whether or not they will pay a percentage of the costs


Paul jones  6 years ago

I was wondering that if i got this surgery done , would i be able to play soccer after the surgery ? and if not how long would i be sidelined for ?


paul jones 6 years ago

P.S i am a goalkeeper and as a result that would apply a lot of pressure on my chest . How much pressure can the bars withstand ?

thanks.


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expectus 6 years ago from Land Downunder Author

pretty sure its normal physical activity after 1-2 months depending on how well your recovering, the bars are titanium i think so there is no way of putting too much pressure on them.


birdchest 6 years ago

Move to Norway, all this is free at all ages...

No insurance is needed.


Matt 6 years ago

I have this problem. But the question I have is that right now I currently do not have health insurance. Do u think that I could get health insurance within the next month and have the surgery following getting my insurance.


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expectus 6 years ago from Land Downunder Author

matt - that's hard for me to say it depends how long it takes for the insurance provider to cover certain types of elective surgerys


Jonny 6 years ago

Hi. I have pectus and I play football. I get really out of breath quickly. Im so happy to find this page and find the breathing exercises. I really hope they work. What is considered as severe pectus excavatum?


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expectus 6 years ago from Land Downunder Author

severe would depend on how deep it is, prob around 4-5 cm deep but severe is mostly defined by how much it presses on your organs and haller index from a ct scan.


Mom of one 6 years ago

This is really helpful. My 14 year old has always had the indentation and he has mild asthma, so we thought his shortness of breath, lack of endurance and chest pain were due to that. But at his physical yesterday the doctor suggested that something might be able to be done and she referred us to a specialist. I'm really interested in the exercises. He's a very active kid and gets frustrated at not being able to compete like the other kids.


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expectus 6 years ago from Land Downunder Author

Is your son able to take in a full breath of air or does it feel like he cannot do that, i'm sure the asthma wont help but here are some exercises http://hubpages.com/health/Pectus-Excavatum-Repair...


Max 6 years ago

I have the same question as Matt above. How long after establishing new medical coverage can someone get approved for this surgery? And does anyone have specific insurance providers that they recommend? I'm in New York and I have extreme PE.


Patriotic Princes 6 years ago

My 11 year old son was diagnosed with PE at birth. We were told by his dr at the time that it was a type of birth defect and not to worry about it because it would correct itself over time. Since then, it has not gotten better, if anything it's gotten worse and we changed pediatricians. Immediately his new ped sent him to a specialist at Children's in Minneapolis. The specialist was nice and informed us that he wouldn't perform surgery until my son was at least 14 years old because the procedure had a better chance of not recurring if surgery was done after puberty began, but it was easier to correct before puberty was complete. My son's case is, in my opinion, moderate to severe. To not make him feel self conscious as a small child, we made him feel special by telling him God gave him his own bowl. That worked until he turned about 9. Now, he's really bothered by it and we will get the surgery performed as soon as we can. My question is, what would be some good exercises he could do now? I saw them mentioned in your article, but couldn't find them. (It's probably me just not looking in the right place.) Thanks!


Jeff 6 years ago

Just found this page today. Fascinating. I am 53years old, and have been trying to find someone who will talk to me with knowledge about how my PE will affect me as I get older. Noticing this year, much shorter breath with exercise. At this point, I am actively searching for a Dr. to consult.


cody 6 years ago

my name is cody i live virginia and have a mild PE disorder, i have mentioned it to my doctor in the past, but she said it is cosmetic. and i should be fine. im 16 now and am self coscious about it. i thought i would stay quiet about is for now, and wait till i turn atleast 18, but from what ive heard its better to get it done young as posible.


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expectus 6 years ago from Land Downunder Author

That's true it's easier to correct while you are young and your bones are more malleable most of the time it will usually get a little worse during puberty


Luke 6 years ago

hi i am just wondering how you measure to see if its mild or not i done a measurement and it was roughly 5cm i think is that mild or severe?


luke 6 years ago

like do u measure from the lowest point to the pec or the top of the pec and if its severe can all those excerises that im doing will it improve it?

thanks heaps you have done a wonderful job with all the info


steven 6 years ago

if i take asthma medication such as salbutamol inhalor before exercise will that improve my stamina


Ben 6 years ago

Please help us find a right surgeon/specialist in US for repair of Pectus Excavatum


Matt 6 years ago

Hello - Im 30 with PE, not sure if its mild or what really? Ive had no problems at all with it so far but recently i seem to be having, well im not too sure how to describe it, it's not a pain? it feels more like a tiny poke/prod as if something is pressing against my rib cage maybe? Its hard to describe, just a little worrying.

I saw my doctor who advised a chest xray - he said it was fine and nothing to worry about but im still getting them. Is this normal with PE? Ive tried to read as much as i can about and maybe its posture/diet or worse?

Please could you advise or help at all with any of this?

Thanks


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expectus 5 years ago from Land Downunder Author

Patriotic Princes- sorry for the super late reply, as far as exercises go anything for posture is great, and plenty of physically exercise

Jeff - good luck jeff, probably best just to find a general orthopedic surgeon to talk to first

Luke - 5 cm would be quite moderate to severe but it all depends on how much it restricts breathing , exercise etc

Ben - you can take a look at pectuslist.com but its best to find a orthapeadic surgeon in your area, its a good place to start.

Matt - it does seem unusual to have that feeling, is it against your sternum or your rib cage? It could be just the sensation of flared ribs but I would think your body would not notice it as much at age 30.


DadofOne 5 years ago

My daughter had the Nuss procedure by Dr. Daniel Doody at Mass General in Boston at the age of 12. He has been doing the surgery for about 10 years now. My daughter suffered from chest pain and shortness of breath while exercising; she now is pain free and plays volleyball and basketball with no problems (she played with the bar in her chest as well.) The bar was left in place for 4 years and she just had it removed 10 months ago. As far as cost; it was $35,000.00 when performed 5 years ago.


Taylor 5 years ago

Hey, I'm just sort of checking around because I didn't even know there was anything I could do to get my chest fixed. I don't experience pain or any problem breathing, in fact it never seamed to be a problem till I was having a hard time raising my arms over my head. I joined the Air Force out of high school and some how passed the first physical but couldn't perform a task were you had to do a push up and turn over and lift your arms all the way up. It was almost comical getting yelled at for something I couldn't do. But long story short, I was medically discharged. I can't afford the surgery being I'm only 21 and can barely afford anything. I'm still on my parents insurance however. My family is covered by HAP and they've been a pain to deal with in the past. Do you think I would be able to get it covered do to the restriction of movement I have?


briana 5 years ago

I'm an 18 year old girl and I've been diagnosed with a moderate case. I'm still contemplating surgery. I'm very active and can't find time though. I'm not sure what to do?!


Anthony Z 5 years ago

Hello, I am a 14 year old male who's living in Chicago. I first noticed this two years ago. Currently I have been running out of breath whenever I play anything that makes me run. I would say my chest goes 3 cms deep. My parents have not noticed it, but I feel like breaking the news to them. Although I would first like to know how much it would cost?


Anthony Z 5 years ago

Would it help if I said i'm 5'10, but really skinny? I also have some back aches. I also do some pushups because my brother told me it would help, but I see no changes.


Maria 5 years ago

I am 23yo and have PE...is it too late for me to get surgery?


Alex 5 years ago

I am a physician with a pectus.it definitely caused me struggles in my teen years.I still remember the feeling of terror having to take my shirt off in clinical methods class exposing my deformity.I did seek a surgical opinion at age 17 re correction but both the plastic surgeon and the thoracic surgeon felt it wasn't severe enough. But honestly probably the best thing WAS exposing it to my classmates...only a small group of 3 others as it was the start of my accepting who I was. My real healing came when I was dating my now wife. I had hidden my "secret" from her until one day we were talking seriously about getting engaged...I told her there was something she should know before comitting...she paused worried what I was going to say..and I showed her my chest..her response was "What that isn't anything..Pheeeww THAT'S what you were worried about..I thought you were going to tell me something serious". I guess it is not as bad as I thought..only 2 or so cm depression and some scalloping of my lateral chest wall...Its good to see web sites about this condition and that there are repairs available but although I would never put my own beleifs onto my patients because I know the turmoil it caused me growing up...all the things I stayed out of to avoid emabarrassment...I can honestly say this makes me unique and I guess G-d has a reason he made me this way so why would I change it. Do I still feel a twinge of embarrassment at the pool or the beach...of course..I still feel self conscious...but you know what..I realize how I feel about it determines how others respond to me.Thanks for putting up this site...I only wish it was around when I was growing up..


Martin 5 years ago

Hi my name is Martin, i have PE and ive been looking into having the Nuss procedure, problem i have is that in live in England and the NHS doctors are always telling me that there is nothing wrong with me. I explained to them that i have very bad pain in my chest and that i think my PE is affecting my posture which in turn is giving me back problems. They still wont listen though. Now i have gone to the NHS the Private medical companies in England wont touch me. They say its a pre existing condition so i cant be covered for the surgury. Is there anything i can do to get help? Any advice would help me out at the moment.

Thanks


Jaeden 5 years ago

Hey, I'm a 15 y/o male who loves sports, but is sadly affected by PE. I find it's only about an inch deep, but it still presses on my lungs when doing physical activity. I noticed pushups helped bring it out a little bit but not much. I'm asking if constantly doing pushups will slowly bring it out more and more, and if there are any lung excercises that will help build lung strength to try to help push out the ribs, and lung capacity to last longer during games. There is absolutely no chance of me getting surgery due to lack of funds and medical coverage.


chiensourd 5 years ago

Hi. I am a 37 yo. Mother of 2 and I have this. I never knew I had this until I was in my 20s. I didn't know why my bras didn't fit right. Why I couldn't breathe well when exercising. Why I was always coughing and had scoliosis. My parents always thought I was fine "oh you're fine. You just need to work out harder" they didn't want me to be a hypochondriac. I know they meant no harm but now I'm paying for it. When my kids were small, I would use a kelty carrier on my back for them and it hurt SO BAD! I thought I was an anomaly. I am 5'2" and 105. I am muscular and wirey so everything looks so exaggerated. It looks as though I have cleavage but I'm only a 36a cup. My chest is wide because of the flared ribs and they stick out. I have trouble finding clothes that fit right. Your page is very informative and I know I am not alone. Thank you. I hope someday insurance companies will recognize the effects psychologically and physically of this condition and cover this surgery. Of course cosmetically I would like it repaired but it's the physical problems that surpass any cosmetic issue I have. Thank you for all the information. Shalom.


louise 5 years ago

hi i have a 12 year old boy who has pe,i am in England and was referred to the child's hospital in Sheffield,the pe is effecting my sons confidence big time,he finds it difficult to change at school because of the other lads taking the mik out of him, he is always worried that people can see his chest when i take him out. i no that if the pe is effecting your confidence and self esteem they will consider the op on the nhs.there is a surgeon at the northern general hospital in Sheffield who performs both the ravitch and the nuss on the nhs. so martin don't give up look at UK Pectus Excavatum and Pectus Carinatum

Information Site this will give the the names of all the surgeons and hospital around the UK who do the procedure for pe hope this helps.


Alex 5 years ago

im 16 and my chest goes in 2.9 inches do you think i should get it insurance will cover but im not sure if i should go for it


Diana 5 years ago

My 14 year old son had surgery at Rady Childrens hospital in SanDiego, CA by surgeon Dr. Barry LoSasso. I highly recommend both the doctor and the hospital. Dr. LoSasso has Jackie, the Pectus Coordinator. She was invaluable to us, any questions we had prior or post surgery she answered immediately, which eliminated any of the stress associated with surgery. We were not nervous because I knew my son had the best surgeon in the country and the hospital is a center of excellence for Pectus. The pain management team and all of the staff are trained to care for the Pectus patients. The pain was very minimal, and when it began to occur, the appropriate medication was given which worked immediately. Dr. LoSasso has completeted nearly 800 Nuss Procedures, and his assistant surgeon over 150 with him. He knows what he is doing. The best age to do the surgery is while the chest is still flexible. The operation is less painful. We were told that it was a perfect time, because going through the growth spurt, his deformity would get much worse. We flew from the East Coast to get the operation. My son was out of bed the 4th day, and left the hospital on day 5. He went off all pain meds day 13. He sleeps in a lazy boy recliner. It has now been 3 weeks. If you have Dr. LoSasso do the surgery like we did there is nothing to worry about. Many of the websites scared us half to death. A doctor should do at least 75 before they even know what they are doing, and make sure the hospital has lots of Nuss patients. It is amazing how great my sons chest looks. One other thing, Rady Childrens hospital is brand new, and the Ronald McDonald House is right across the street where we stayed while he was in the hospital. It is also brand new and both are absolutely beautiful. We sat in a lovely garden with palm trees and sea grass and blue sky while we were waiting for the operation. If I couldn't design a prettier place. The chest wall deformation causes compression of the heart which made my son tired. To tell if insurance will pay for it, get a MRI or CAT scan, an ECHO cardiogram, EKG, and a Pulmonary Function Test. If the haler index is greater than 3.5 insurance will cover it. You can send that information to the Childrens Hospital of the Kings Daughter in Norfolk Va, and they will review the tests and tell you if you are a candidate for surgery. My sons chest only went in a half inch measuring from the outside, but it was much deeper inside. It was much more severe than it looked. GO for it, but make sure you go to the right doctor or it could be a mess. And don't let them talk you into the Ravitch Procedure. Get the Nuss Procedure for Pectus Excavatum. It will add 5 years to your life and you will not regret the surgery especially if you have Dr. LoSasso. The flight isn't that expensive, and Ronald McDonald house is only donation for your family.


Mindy 5 years ago

I am 45 and have severe pectus excavatum. I have had chronic respiratory infections for 20 years(ie pneumonia over and over)and did not find out I had this until I was 30 years old. I had to do my own research because most (almost all) of the doctors don't know anything about PE and treat you like your a hypochondriac! I have chest pain all the time, respiratory infections all the time(I have pneumonia right now and have been sick for 3 months), short of breath etc. I found Dr. Losasso this week by doing my own research, he worked with Dr. Nuss (who made the Nuss Procedure) and he is highly recommended. Jackie at Dr. Losasso's office is requesting a referral from my primary. I hope I can finally get this surgery and feel better. Hope this helps someone else with PE to find answers.


cathy 5 years ago

My friend just had the nuss procedure two weeks ago. The results are great but the pain is still very bad. He spends 95 per cent of the time lying flat in bed on alot of painkillers. He needs help to sit up and get out of bed and can only walk for short distances before he is tired or the pain is too much. His breathing was very shallow after the op but it is improving now with the breathing exercises. How much walking, sitting, and out of bed activities should he be doing after two weeks. He is unable to dress himself. He is still on the same painkillers he was discharged with from hospital which is the maximum you can take of each type. Also is there some physio he should be doing as well as the breathing exercises.


DK 5 years ago

Hi, thanks for putting this up and all the summaries of PE. Im a 27 yr old male living in NSW, Australia with mild or moderate PE,but i Dont hv any chest pain and respiratory problem but weaker stamina. My father has it as well, but his deformity is better than mine. he is 64 now, and has no complication from PE, except his heart is not beating fast enough,his blood pressure is normal though.

My PE developed when i was about 14-16, and i did not notice it can be a serious condition until i became a physio student recently, and i did extended research based on vast medical data from library. of course, i found lots of scary PE-related conditions that made me always worry about the medical aspects of it. i think i hv overstressed it and confused myself. i will definitely see a different doctor to request CT and X-ray exam, anyways, I wont think about it now until i have all the interpretations back from diagnostic imaging.

currently,I am planing a baby with my wife, but I believe my PE is genetic thing as my father has it too.

So, I am wondering if there are anyone encountering similar experiences and struggling to make a decision on having a baby? I am really anxious about passing PE to my offsprings, as i dont want them to go through what i hv been through.

Im very glad today that i found such an amazing website for me to ventilate my thought and to share info with other people. thanks mate, good work!


RAUL 5 years ago

HI IS THERE A DOCTOR WHO PERFORM NUSS PROCEDURE IN MEXICO ,PLEASE HELP

THANK YOU


Anthony Z 5 years ago

I had this procedure done two years ago, the recovery time was very painful, i could only sleep on my back, i could hardly walk, i could barely breathe, and i couldn't twist or turn to any degree for about two month after the surgery. I’m sure i am forgetting some other things i dealt with but those were the most remember-able. About 6 months into the surgery i found out my body was rejecting the bar and a red circle started to forum under my right nipple, this circle later grew to become a raised wound that would drip blood and puss. This is why i took the bar out in two years instead of three. 10/7/2011 i had the bar removed and that surgery was a walk in the park compared to the first one where they put the bar into my chest. It’s been a day after and i hardly feel like i even had a surgery. Overall i would say i am happy with the results and my organs have room now. Which is what you need to say to get the insurance companies to cover it, "i feel like my lungs are being compressed, and i get tired when i exert myself." medical issues from your chest will give you ground on the insurance companies basically.

On a side note i have been on anti-biotic for almost a year now because of the allergic reaction my bodies had to the bar.

my biggest concern now is if the results will stay due to my short time with the bar in my chest. i haven't had any major sink in my sternem but there has been a little sunkness, nothing major to give away that i have a sunken chest.


Beth 5 years ago

hi my 13 year old daughter has this its quite deep and she does get short of breath but is she eligible to the nuss procedure as she is a girl? it may sound silly but all the cases I've seen on the internet have been boy patients.Also is the nuss procedure available in the UK?


Mom of 15 yo boy with PE 4 years ago

I have been researching PE obsessively for about 3 weeks and finally bumped into this forum. Just finished reading all of the posts and had to add our own experience for your reference. My husband also has this condition, as does his uncle, so when our son had it present at birth we, too, figured it was just not a big deal. Especially since he was also diagnosed with bilateral club feet. 15 years into his life, we now have a little bit of hindsight, and I have to say - I am amazed at what he has overcome! Two surgeries, one at only 6 months old, another at five. Hitting adolesence has added to the pain from scar tissue and bone shifting in his deformed feet, and now we are connecting the dots with issues he has been suffering from the pectus. He also has a bit of scoliosis, which we were always told was related to the club feet. I am wondering as I read all of the above posts if there is some distant connection between all of these genetic abnormalities. We went into his pediatrician outside of Chicago and she noticed the depth of his indentation and after asking questions regarding breathing, and heart & chest pain, recommended that we see a cardiothoracic surgeon for a consultation and to begin testing to see if he is a candidate for the corrective procedure. At this point we are just in the beginning phase of gathering information. But the places that I am considering are Children't hospital of King's Daughters, in Norfolk, VA where Dr. Nuss himself pioneered the surgery, Mayo clinic in Rochester, MN, and Children's Memorial in Chicago. My son loves sports is currently playing lacrosse, but has played baseball soccer and volleyball. He is very skinny which seems to also be a recurring trait amongst other posts as well. The other thing that keeps popping up is Marfan syndrome (elongation of limbs and extremities)which can cause other complications. Well I will check back and let you all know if find any other important information to share. Take care you all & Merry Christmas & Happy Holidays


i dont know if its PE 4 years ago

Hi, Im Olivia. Im 15. Im very athletic and my chest isn't getting any better,what kind of doctor should I see? please reply.


NJsMom 4 years ago

Hi I just found this webpage with everyone's experience with Pectus Excavatum. My son is almost 11 and has P.E. We live in the South Florida area. We have seen two pediatric surgeons. If anyone needs information, the better of the two in my opinion, is Dr. Cathy Burnweit at Miami Children's Hospital. According to Dr. Burnweit, my son is too young for the surgery at this point. He also seems to have flared ribs. I am researching flared rib braces as well. As I am reading everyone's comments, it is kind of astounding that several people have said the post operative time is very painful, and then some say it is not so bad.....which is it? I am terrified for my son to have this surgery. Having a bar in your body for a number of years sounds awful. The doctor said the bar could shift or flip over, or become infected. My son is very into soccer. I think I would be scared to let him play any sports for fear someone would hit him in the chest. His ribs are starting to stick out, and his shoulder blades look uneven as well. As a mom, I feel like I am living a nightmare thinking about this all the time.


Taylor 4 years ago

I had PE when I was younger and had the Nuss surgery at CHEO in Ottawa, Canada when I was 10yrs, then taken out when I was 12. In the immediate years afterwards everything was better, but it has since sunken back and I have now been experiencing similar chest pains as I did before I got the surgery. I am now 21yrs old.

I noticed someone above had asked about getting the surgery done a second time. I'd really like to know if this is possible, as I feel like that is the only tried and true way to fix this pain. But is this the kinda thing that I need to get fixed whenever I start feeling chest pains again? Where does this madness end if not with Nuss??


lil 4 years ago

Good morning. My son, who is 15 years old had the Ravitch procedure for Pectus. This procedure was performed the week of December 22, 2012. At the time of the procedure there were 3 titanium bars placed in the chest. Two weeks ago my son started experiencing some pain and discomfort. When he went back to the surgeon the third, bottom, rod had broke. Is this common? The surgeon recommended leaving the rod in place in hopes that the ends would calcify. Could this be a defect in the rod, what would cause this and is it safe to leave it? I do have copies of the x-rays available.

Thank you for your time.

Sincerely


Michael 4 years ago

Hi I'm 15 and have PE and it's mild , but I was wondering if it would get deeper or cause it to change at all if I start to work out my chest muscles ?


Josh 4 years ago

Hi,

I live in Australia and I got the surgery done. It cost $25,000 + $3500(Medical Eqipment ect.) If you have Private health insurance the insurance company will cover the $25000(not the $3500) once you have waited out your waiting period.


chris 4 years ago

hey im currently 18 and i have a mild case of pigeon chest and i was wondering how i could fix this or what to do to make it better ... i usualy dont mind it but im deathly scared of going to pools or activities with my shirt off and its become a huge downer lately with the weather being so good and ive been looking in to getting the surgery done and i have military coverage how would i go about getting this done


richard 4 years ago

i had my op done last year i live in the uk my op was free


Tony 4 years ago

Hi I'm 16 yrs old and i was wondering how much would a nuss surgery cost and if it is painful at all


Vikki 4 years ago

My son had severe PE. We learned about the "Nuss Procedure" when he was 13 through an article in NEWSWEEK. We checked doctors here in the New York TriState area. NO ONE in our area had preformed more than 25 surgeries. My son has Autistic Spectrum Disorder and I didn't want anyone opreating on my son, with that little experience. We called Norlkfork,Va "The Daughter's Hospital of the King's Daughters (where Dr.Nuss operates) to made an appointment. Why not go to the person who invented the procedure? They where wonderful at his office! The hospital and staff was so prepared for the patients and families. Ronald MacDonald House is across the street and 95% of the people there came for PE surgery. There were people from all over the world staying there. Dr. Nuss's staff worked so hard to help us get insurance coverage for the procedure. Dr. Nuss has every nurse view the procedure, so they can understand what the patiences go through. The Hospital took care of the whole family. They believe that if the families are happy, that will help keep the patience calm. They suggest "sleeping in" at the hospital. The first thing my son said when woke from surgery was "I have a normal chest." The beginning recovery was painful. He had the surgery in summer to leave time for recovery before school began. The bars had to stay in place for 3 years. He returned to Dr. Nuss for a easy removal procedure. We couldn't be happier with the end result. I would suggest following though with surgery for anyone has PE.


erick bravo 4 years ago

I have gone through this Surgery before at the age of 17. I am 22 now. I highly recommend doing more research on other procedures and finding the RIGHT specialist. I am not sure if the doctor who performed the surgery knew what he was doing or not. Maybe the procedure worked on others before me. But my chest is starting to cave in again. The familiar feelings of my lungs and my hearts being moved and crushed are coming back. The procedure was $100,000 but payed a percentage through the insurance company. I need the surgery again but I do not have insurance any longer. My parents are out of work. My job doesn't pay much. I don't know what to do. All I know I I wish it would have worked the first time. It horrible to know the resource to fix me exists but I cannot have the surgery because we don't make enough. This is unfair.


Chad 3 years ago

I'm 30 years old and have a severe case of PE. It never hindered by ability to play baseball and was fortunate enough to pitch at the college level. But it has definitely taken a toll on my confidence, which in return effects my relationships. Growing up, I was always teased at the pool and as I started becoming more self-aware of it (as I hit puberty) I would never go swimming or take my shirt off. For instance, at youth basketball practices I dreaded having to play shirts and skins. My teammates would say "whooooa, what happened... can I feel it?" I used to tell them I got shot in the chest, and their jaws would drop lol. As I started dating seriously in college I was always nervous how girls would react to my chest. Now, when I start to like a woman l I feel like I should tell her about my chest on the second or third date so she won't be grossed out or shocked when she get blindsided with it. In the bedroom, it's been an issue since I hate to take my shirt off. Fortunately for me, the girls I've dated have been understanding of it and have loved me for me. I wish I had known about the Nuss procedure years ago cause I would've undergone the procedure 100%. I want nothing more than to be able to take my shirt off in public and not be embarrassed about it.

To the parents out there of kids with PE, please give your kids a choice at an early age so they don't have to endure all the psychological pains they're likely to run into growing up. I never got that choice, and so wish I did.

Fortunately, I haven't had any breathing or internal issues... yet.


Rodney McCubbins 2 years ago

I'm 42 and I live in Louisville, KY. Is their a specialist in this are that would do this procedure at my age? Also I have United Healthcare have they ever covered this surgery for anyone else?


usman 2 years ago

what cost for this surgery


Ericmays123 22 months ago

Hi I live in Virginia and I'm wondering what's the best insurance I should get?( that would cover a huge percent or all of the surgery) then would it be alright that once I get my insurance to start looking for a local doctor and do all the testing right away?


serpe 3 months ago

My son is about to turn 18 in one month and just had his Pectus Bar removed. It was inside him for 3 years. So my story begins when he was just a baby. I knew his chest looked a little odd but growing up he has always been very tall and thin. He always had routine checkups with his pediatrician, and every year during the exam I would address concerns about his sunken chest...The reply from the pediatrician "Don't worry mother, he is fine he is just very thin and God made us all different - some people are thin, some heavy, some tall...) It wasn't until he was going into the 9th grade, and wanted to try out for the high school volleyball team and need to get a physical by the schools's doctor, that this became a real issue. The doctor would not clear him to play any sports because of the sunken chest and long wingspan. He told us we need a physical to be done by a cardiologist, and that he thought my son may have Marfans. Within 2 weeks we saw a cardiologist and a genetic doctor. My sons heart was being pushed to the left side of his chest and was being crushed...off we went to Childrens hospital in Phili. where we saw a thoracic doc.. He spoke to us about the Nuss procedure and we decided that this was the route that needed to be taken. Results of the Marfans came back negative..... and One month after our visit to Childrens Hosp. my son was in surgery. The procedure took about 4 hours. Nothing and/or No one could prepare me for what I was about to encounter. When I entered the recovery area, my son was in so much pain it was unbearable for me to watch. Although he had a very very good team trying to manag. his pain. The next week's stay in the hospital was exhausting. He was in constant pain. But the results were immediate. The whole, indent in his chest was gone. Seventh day post op we were discharged and went home. It took about a month for him to recovery. The bar in his chest stayed in for 3 years. Two weeks ago, and now about to turn 18, he had surgery at Childrens Hosp. to remove the bar. This time the surgery took total about 1 hour. When I went into the recovery room - totally different then the insert. of the bar. - he was awake no real pain, just a little discomfort (very mild) and within 2 hours we were leaving the hospital and on our way home. His chest looks great. And more important He is so very happy he had the corrective surgery.

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