Marfan Mom with Questions

[suzie]

Hi. my 18 y/o daughter has Marfan's - diagnosed when she was 8 and I am looking for information as I have as yet been unable to convince her to check into a web site like this herself for information - although her computer skills are much better than mine. She has had a couple of surgeries - a back fusion when she was 14 and her pectus repaired when she was 3 - before we knew she had Marfan's. Anyway, we are looking at her having a Modified Ravitch repair on her pectus in the near future and I wondered if anyone else has had it done and what their experience was like afterward. was there a lot of pain and for how long - did it limit your acitivity and ability to work or go to school, ect? also - wondered if anyone out there has had cardiac surgery with Dr Joseph Coselli out of Houston and any thoughts about him as a physician? thanks!

[Jeanette]

Hi -
Sorry I don't have any information about the modified Ravitch repair. I can say, though, that Dr. Coselli has a very, very good reputation as a cardiac surgeon for people with Marfan syndrome. I have not had him, but if I ever need surgery, he would be one I would consider going to, even if he is half-way across the country from me.

Jeanette

[MarfMom]

I know you said your daughter is reticent to join an online community, but the teen group (ages 13-19) would love to have her! I'm one of the coordinators. We have our own website: www.marfan.org/teenspace and a group on NMF Connect: http://nmfconnect.marfan.org. NMF Connect would also be a good place for you to post this question, since it doesn't appear you were able to find an answer here about the surgery. It's a social networking site like Facebook, but just for people with Marfan & related disorders and their families.

~ Maya