A little info about "MWS"
Home State: Indiana
Haller Index: Only a 4.5, but they had to use a corrective index formula since my chest is too narrow for a proper Haller score. My corrective index is at 45% and is symmetrical, so my Pectus is pretty severe.
Where to Start
A Call to Action—Be at the Mercy of No One
When I decided to drop the hammer on finally getting surgery for my Pectus, I was naïve enough to think finding a surgeon would be easy as finding a doctor to wrap an arm in a cast. THAT WAS NOT THE CASE! When I moved to my new city, I did what any normal person would’ve done. I told my new primary care provider (PCP) to go find me a surgeon. When we both initially discussed a surgeon in my state, it seemed my only option was getting it done at a children’s hospital. I didn’t think performing the Nuss could be that much different on children than it is for adults—I was wrong.
How Preliminary Research Saved Me
I found a patient’s video blog online of his Nuss journey at this hospital at the age of 26. This guy was in superb health and his finished chest looked amazing. I thought for sure this hospital would work on me. However, I kept watching his other videos years down the line and noticed something strange. He made the statement on how he was still on heavy pain medications and had a single Nuss bar that, according to him, had to remain in his chest permanently due to a complication of his bones improperly growing back.
I don’t know the full details of his complications, but having someone tell him that his bar had to remain in his chest for the rest of his life was just not acceptable to me. I noticed the surgeon also used a single Nuss bar instead of two or more. I am no medical professional, but if you continually read the forums, you will immediately identify some red flags from this particular patient’s journey. The moral of this long rant is this… Pectus Excavatum is not well understood in the medical community. I have been through legions of the state’s best medical doctors for another condition I have, and not once did any of them suggest surgery or relate my symptoms to it.
Your Pectus is a Project—Manage It
Correcting Pectus Excavatum is definitely a project, and you are its project manager. Do not throw yourself at the mercy of another professional and expect them to take care of everything. Definitely do your homework as this surgery is no cakewalk, especially for adults. If I had just gone with the flow, I have no doubt I would be in the same boat as the patient I mentioned above. I once thought all doctors had super powers and could take care of anything, so I just blindly accepted what they said. Let’s be real here for a moment. Pectus is a rare condition in the grand scheme of things with very little publicity. Do you honestly believe your PCP is going to do more research on Pectus than the patient with the condition? I firmly believe no one in this world will do a better job at adhering to your best interests than yourself. If you want a job done right, do it yourself. (Except for the surgery and aftercare. You suck at that, haha.)
• Actively look for a surgeon on your own. Do not wait on your primary care provider to do this for you.
• Research patient experiences to better decide on the surgeon
• Pectus correction is a project and you are its project manager. You will be coordinating between doctors, insurance companies, your life, and work. Facilitate communications between every entity of this project and do not stand on the sidelines waiting for someone to take care of things. This is your project after all.
• Pectus Excavatum is poorly understood in the general medical community. Don’t be surprised if you know more about the condition than your average doctor.
I decided to film my journey through the entire surgical process for Pectus Excavatum correction including my recovery. I did this on YouTube and you can check it out in the "My Journey" or "Videos" section of this site. I recently came across someone in the Pectus.com forums that goes by the name "MWS" and he had a similar idea to document his journey. Instead of filming everything he decided to write it all down. He kindly gave his permission to use his words, so we can try to help more people with Pectus Excavatum. His guide is the most complete and detailed guide I have ever seen. It is very long, but pretty much breaks down every detail start to finish. As I read it I felt like I was reliving my journey all over again. Thank you for all of your efforts "MWS"!! Now please enjoy his guide.