Pectus Excuvatum Redo at Mayo

Thank you for stopping by.  Several individuals have asked if there is anything they can do so I have decided to create this account.  Any money donated will be used to assist with medical bills, flights, hotels, etc.  If you don't want to read . . basically my sternum/chest wall is sinking in and compressing my heart and lungs.   For those interested in a back story . . . 

I seem to get sick more than your average individual. At my last physical, I asked my doctor if she could refer me to an allergist. I went to meet with the allergist and hoped to figure out what it was that was bothering me. All of the allergens on the panel were negative. The doctor then did a quick pulmonary test. They seemed puzzled and decided to check my height and weight because the results weren't adding up. They gave me some puffs from an inhaler and retested. The results were the same. The doctor told me that it's not good and asked how I felt. I felt like I do every other day. He said that folks with my results usually struggle to get off the couch. I was then sent for X-rays and PFT'S at the hospital. It was weeks until I finally heard anything.  My results showed severe lung restriction and that my lungs were functioning around 40%.  I was told that after consulting with a thoracic surgeon and pulmonalogist, the doctors decided that my issue was out of their realm and that I should try to look into a clinic in St. Louis. 

For the first time since I was a child someone finally looked at the big picture and figured out what is really going on.  The allergist is not able to help or even give a personal referal but he did give me the diagnosis of Pectus Excuvatum.  For the first time someone actually took me serious and did not make me feel like I was going crazy.  I have had issues for as long as I can remember.  In high school I played basketball, soccer, tennis, and ran track.  I always had a hard time breathing and just felt like I couldn't keep up with everyone else.  I was diagnosed with asthma and given an inhaler - "problem solved".  The inhaler did nothing except make my heart race even faster.  I also had a few episodes where I would start to pass out but never lost complete consciousness.  By the time I would get to a doctor everything was just fine.  After visiting several cardiologists they did determine that I have Mitral Valve Prolapse and a murmur.  Again, no big deal heart issues ran in the family.  I was told to quit all competative sports.  They even denied me from taking a skiing course in college.  Over the years I have had episodes of tachycardia.  When I was pregnant with my second son I had an episode while working in the operating room.  Luckily an anesthiologist hooked me up and printed out recordings for me so that it would be on record for the cardiologist.  My heart rate was in the 180's.  I also get stabbing pains on my left side.  I can never tell if it is my ribs or my heart but if I try to inhale or exhale it feels like a knife is being twisted.  Of course my GP told me that I look perectly normal and healthy and that is was just muscle spasms.  Yeah . . . . ok.

Pectus Excuvatum is the most common congenital deformity of the anterior wall of the chest.  It is more common in males.  No effective nonoperative management strategies can correct severe pectus excavatum.  Several tests are ran to determine the effects of this condition.  To deteremine the severity of the pectus excuvatum a CT scan is ordered.  From the scan the measure your Haller Index.  The Haller Index is defined as the ratio of the transverse diameter (the horizontal distance of the inside of the ribcage) and the anteroposterior diameter (the shortest distance between the vertebrae and sternum).  A normal index is 2.5.  An index greater than 2.5 is considered significant and an index greater than 3.2 is considered severe and is often used as a criterion for surgical candidacy.  My index is 5.9.  Below is  a shot from my CT.  You can see that the right side of my heart is squished.This is a normal CT just so you get a picture.



For those that know me well, you know that I underwent corrective surgery for Pectus Excuvatum when I was a young child.  I always mentioned this so doctors were aware but I guess no one put it all together. Below are a few before and after pictures from my first procedure.  My first operation was the Ravitch procedure.  In short, the surgeon went in removed some ribs, did an osteotomy on my sternum, reposition ribs/sternum and placed a bar underneath to bring my chest forward.  This bar would later be removed through a small incision on my left side.  
For the past three months I have been doing lots of research.  In addition, I have had my blood drawn and testing for genetic disorders (Marfan syndrome, Ehlers Danlos, and other connective tissue disorders).  I will not get the results until sometime in March.  I have been and I am currently trying to contact surgeons that specialize in adults with pectus excuvatum.  They are few and far between.  Many surgeons that deal with this condition will not take patients that are adults (25 and older).  There is one surgeon listed in NC that has experince in adults cases.  He is located in the Duke Cancer Center I went to Duke to meet him for a consultation.  While he seemed to deal more with cancer patients, he told me that he has performed 20-25 pectus corrective surgeries.  His approach is not one that I have ever heard of before (the two common approaches are Ravitch and Nuss).  I did like him however at this point I want to make sure that I am 120% confident with my decision.

I have also contacted a wonderful pediatric cardiothoracic surgeon in Charlotte that deals with pediatric cases.  I am looking forward to sitting down with him this week to hear what he has to say.  After trying to do all of this on my own I realized that I want and need the opinion from a medical professional on the inside.  Even though he is a pediatric surgeon I am hoping that he can point me in the right direction for me case.

I also have a consultation scheduled at the Mayo Clinic in Pheonix Arizona for mid March.  The surgeon at this facility is supposedly the top surgeon when it comes to dealing with adult pectus cases.  Her assistant mentioned that it sounds like I have something known as Acquired Thoracic Dystrophy which is common in individuals that had the Ravitch procedure at a young age.  If that is the case, basically my ribs failed to grow as the rest of me did.  I plan to discuss this with the surgeon in Charlotte as well.

I will keep this updated as I have my consults and start making decisions.  I have set the amount needed at this time to help me with the trip to Pheonix and the consultation fees.  I will update the goal once everything is set and I know what insurance will cover.