My daughter was diagnosed on 7/6/12 with SMA. It started years ago but we never had an answer. Right now we are trying to find a doctor who can help us with this. It is pretty sad when you here the answer no one can help you. We are now trying another hospital that hopefully will help. It breaks my heart to see my daughter so sick and in pain. She has lost 25 pounds which she didn't have to lose to begin with. I see her ribs her backbone etc. Reading the information has help but like a lot of you its trying to find someone who believes you.
My son has SMA and is going to have surgery this Thursday March 14th. It won't be done laproscopy as his doctors say they need to open him up to make sure they take care of the problem with one surgery. Has your daughter had surgery for SMA, or has anyone else had surgery for SMA, and is laproscopy not recommended?
My daughter (17) just had surgery last week for SMAS. She had it open, as well--a duodenojejunostomy roux en y. Not sure how she'll do long-term, but so far, we're all pleased. We live in Pensacola, FL, but have heard the best surgeon to do this is Dr. Mahron (sp?) at Johns-Hopkins.