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

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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.

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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.  

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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.

More Pectus Excavatum Hubs

Comments

Ryan on May 14, 2018:

Im 35 year old athlete and have PE and have noticed ive been developing sleep apnea and started doing research and found out PE interferes with sleep. I listened to some people who had te rivatch procedure and they said they get like 7 hours sleep and wake up full of energy and they always felt lazy and lathargic before the procedure. That has been my life long story as well. I always wondered how people pulled off working, school, and athletics without having meltdowns.

Anyways point being Im kinda pissed about going 35 years of my life and doctors shrugging it off and saying it has no impact on health. That being said if Im to correct this for sleep and pulmonary purposes, what is the best route? Im uninsured. Is it cheaper to have procedure done out of country? Is it worth paying for insurance? If so, how much does it cover? Any help on how to fix my life under very limited finances would be greatly appreciated.

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serpe on August 25, 2016:

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.