Pectus Excavatum Surgery
Donation protected
Pectus Excavatum is basically a dent in chest wall or sunken in sternum. It is fairly common but Severe cases arent & unfortunately I am Severe! Surgery for this is usually & supposed to be done before 20-23yrs of age because cartilage turns to bone! Above is my CT scan top is sternum & dent pushing on heart, bottom is Spine- I have 5cm between sternum & spine. This is what Normal CT scan would look like for comparison...
There are not many Adult Surgeons only a few. Basically the surgeon I saw (NY) told me he wouldn't know How to fix me, he said Mine is Long, deep, & couldn't feel xyphoid, he also said that No surgeon would want to touch me because I am adult & Severe. There are few Experts in country... so I am trying to get to Arizona Mayo to see Expert adult surgeon. See what options are, what Life outlook is at this point, & can I wait until little one is 5 (like I plan) to have surgery.
My whole Life I was told Cosmetic by DR's & my parents. Started to have Chest pains, pass out symptoms, sinus arrhythmia & breathing problems at 8yrs old. Back problems (from neck to hip) started in my 20's possibly because I am not symmetric. At 24 I had pneumonia & they finally did chest xray & CT scan. Thought I would find out my severity Finally (measured by Haller Index)- but they Never told me. What I did find out was that my heart is squished enough to be displaced! Up until this year I didn't know how Severe mine was because the DR's Never told me or did testing.
In 2012 I a baby & it all seems to have gone downhill, at first I just thought it was a passing thing or "Normal" with Pectus (chest pain is "Normal") but it has been Torture & a Nightmare since. I can't stand longer than 30 minutes, my heart rate is Crazy every day (43- 179, arrhythmia & Pauses), my Oxygen drops (low as 70's), back is much worse over all, my Hip Pops out (can't walk for days), Knee & Shoulder issues, I have had worsening of chest Pain (Longer, Stronger, More Frequent). I can't play with my kids, I literally & barely leave house (even for Food) or even my couch for very long (1year in March).
Haller Index is what they use to measure & determine severity, basically it's Inside width divided by Inside Depth. A normal chest would be a 2, at 3.25 they start to consider Severe. I am a 5.8 at least but they didn't Include Exhale so it's probably worse than that! I am in a group on Facebook & mine is Not the worst I have seen but definite Top 30 I have seen. There are Only 2 options for surgery- Nuss is a bar or up to 3 placed in chest for 3-5years or Ravitch is where they cut pieces of sternum out & try to put back together better (with this there is chance it will Not re-grow, since I am an adult!) I have been trying to deny surgery is a Need, but I cant really tell myself that anymore!
PLEASE, PLEASE, PLEASE HELP Me reach my Goal! Please Share even if just to spread Awareness. Thank You to all who read & donate, surgery costs (30- 60K to start) may be completely up to me- that is way it is looking from here so far.
Kelly XoxoX
Organizer
Kelly Lauro
Organizer
West Babylon, NY