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Author: Subject: 28/F Haller 24
mngmd
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Registered: 5-8-2018
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[*] posted on 7-5-2018 at 05:59 PM
28/F Haller 24


I wanted to post something just to add my story, especially because I felt so alone for so long.

I had noticeable PE from when I was a toddler, but was told it was cosmetic my whole life. I had scoliosis and had regular x-rays with an orthopedist (I even ended up having my spine fused) and no one ever thought it was bad enough to have fixed. When I turned 20 I was massively effected by how uneven my chest looked and decided to look into having it fixed. I was told again that it was just cosmetic and was sent to a plastic surgeon. I had a breast augmentation later that year and I felt SO much better. I sort of just assumed everything was ok and for years ignored I even have PE. Fast-forward to a few months ago when I had an echo-cardiogram done as a precaution for another health issue, and the test was inconclusive. They sent me for a cardiac MRI and I let the radiologist know I have PE, so my heart is a little off center. I went back to my cardiologist for a stress test and he gave me a print out of my MRI results - the good news is everything is fine with my heart (except it's rotated 90 degrees and pushed completely into one side of my rib cage), the bad news is that I have a haller index of 6.5. During my stress test I could not breathe so the cardiologist sent me to a pulmonologist who couldn't see me for a few weeks. I knew a haller of 6.5 was [Censored]ty news so I did some research and discovered that most hospitals that do PE surgery only operate on kids (or at least adults under 25). Turns out the closest place that does the procedure on adults is the Nuss center at CHKD in VA. Which is pretty awesome, because that's where the procedure was developed! So I called CHKD not knowing what to ask or what to expect, and they were super helpful. The person I spoke to was really validating and explained the process to me. They mailed me a packet of papers to fill out and told me what tests I would need to have done. When I finally had my pulmonary function test done I found out I have 67% lung capacity (no wonder I was out of breath). I sent all of my test results and paperwork in, told them which doctor I preferred, and they called me less than two weeks later. They are recommending me for surgery and I met with Dr. Frantz on July 3rd, he was AWESOME! He answered all of my questions, super compassionate, very clear communication; I feel really confident having him perform my surgery. He recommended a Nuss procedure, marked my chest so I would see where the incisions would be, showed me the bars that would be put in, and described the procedure in depth. It turns out I'll have to have my breast implants removed 3 to 4 weeks before my Nuss to reduce the risk of infection. I'm not thrilled about having another surgery, but it's better than an infection! I'm trying to mentally prepare myself for seeing my chest without visible breasts and being really able to see how bad my chest is. I'm looking into getting a mastectomy bra with the inserts so I won't look totally different for a month. It also turns out that the radiologist who measured my haller didn't actually measure the worst part of my chest - my haller isn't 6.5, it's 24. twenty freaking four. apparently there's 20.33mm between my sternum and spine right at the bottom of my sternum. Dr. Frantz said I'll probably need three bars for three years. He also said my rib flare won't improve immediately, but it should improve slowly over the three years the bars are in. I asked him how many cases he sees that are as severe as mine and he told me out of 100-120 patients a year he has 1, maybe 2, as bad as me. So I'm special! I've got an appointment with a plastic surgeon tomorrow to find out about getting the implants out. My surgery date for the Nuss is August 30th! I'm so excited to feel better. I would also seriously like to smack every [Censored]ing doctor who told me this was cosmetic.
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