Marfan's Syndrome and Scoliosis
This is the first time I've started a thread but I need information and I need it soon. If you've come across me before then you've read my story of having scoliosis but to those reading about me for the first time here is what's happening.
Yes I have scoliosis which I've had since I was 12 had my first harrington rods put into my lower spine at 13 the upper spine at 17 and the same upper rods removed at 21 which I've lately found out is called revision surgery. I don't know all the technical names or degrees etc that everyone else seems to know about this condition except that I have the usual rib hump on my right side that's been there all along I'm now 29.
I've also recently found out about thoracoplasty surgery that could reduce this hump something I have always wanted but have recently found out may not be able to have because I also have marfan's syndrome and my surgeon has reservations about doing the procedure because he doesn't know if my heart and lungs would be strong enough because of the marfan's.
I need to hear from ANYONE who has marfans and scoliosis associated it with it who's had thoracoplasty surgery as I need to find some evidence that it can be done and that it was worth having done and the effects it has had with the marfans.
This may be my last chance to have anything more done with my back, why I wasn't offered this procedure before?, even my new surgeon can't answer that one in fact he was trained by the surgeon who performed the revision sugery and he is referring me back to him as he admits to not having the experience.
So I have until this next appointment to find out all I can so any help would be greatly appreciated I'm 30 next march and getting married on my birthday that's my best birthday present ever getting rid of the hump or even having it reduced would be the best christmas present ever please help if you can. Thanks Debbie