My daughter has sma, She is so sick. She was diagnosed with sma 2 years ago. We live in Chicago and have been to all of the "best" ? Either they will not touch her or they want to use her as a ginny pig. WERE was your son's surgery done? My daughter is in so much pain, nausea, vomiting, and her weight is up and down. I just can't watch her in so much pain any more. Thanks
I can see most of these posts are old but many of you may still be struggling and have questions. I actually posted on this thread when we were in the midst of several ER visits and 41 days in the hospital (you may spot my post under the name Alan B.). Unfortunatly I did no get any replies when I was really desperate for inormation. Good results for us! Diagnosed at 13 my daughter had the distended stomach, 5 liters pumped out and NG tube contuined for about 20 days along with nj tube for food. Laproscopic duodnojujuostomy Dec 2012 and NO problems since. We are one of the few success stories...
Please contact me if we can answer your questions, we have helped others. Actually had another teen come down and our surgeon performed successful surgery on her.
Alan
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I hope yall are doing well! I just posted a short version of our story at the end of this thread. Successful LAPOROSCOPIC surgery in New Orleans Dec 2102 for my daughter who was 14 at the time. Is your daughter doing better?
Alan B
Hello. My daughter's friend has been diagnosed with SMA Syndrome . She is 12 years old. She went to a hospital and was told that her condition was not severe enough to warrant surgery. She is now back at sick kids. What are they to do?
I just had the surgery to correct it. Had symptoms that went unnoticed for years. The only 2 tests that can diagnose it it CT scan with contract an a upper GI series with barium. Surgery is the best option I went to Stanford Hospital, Palo Alto California. The bypass the mesenteric artery and do a laparoscopic dudeno je junostomy. Hospital stay is about 6 days and recovery times varies. I go back to work july 15. DR mane is Poultsides and I was the 6th patient he has done, and for this syndrome is alot. Good luck to you and your daughter. The hardest part is fining a doctor to diagnosis the symptoms
Join the superior mesenteric artery syndrome support group on facebook. It has a purple logo.
2015 ;-) it took 6 yrs AFTER surgery (for the SMA) for things to get better, and many many er visits...with NO help from er! But it takes time to heal. My intestines took a long time to retrain themselves
Intestines are smooth muscle and it works as it needs to. Therefore mine had learned to basically work backwards to accommodate the obstruction. But time did make things better in the last 6 months I have gained 40 lbs and I am the healthiest I have ever been.
Thanks again dr zwiacher
And thank you God!
Can you tell me the name of the surgeon that did your surgery? My DNL has SMA and they are looking for a surgeon that will perform the procedure in KC, Missouri.
Thanks!
Please send me the names of the doctors in Kansas city that took SMAS seriously! I have been diagnosed by two different doctors but now it is time to find a specialist... any recommendations in Kansas City???
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Hey why don't you come to the UK I've been suffering from SMA for the past 4 years now and finally I'm getting a surgery to try and help as it's my last option. ive tried changing my diet to being on. drips and tones of medication but nothing helped.
I'll keep u updated if u want
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Hi alen. I know it's been along time since you wrote. Could you please contact me. Hope to hear from you
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I have been dealing with CVS (Cyclic Vomiting) since July 2015. I got a CT and I am now being diagnosed with SMA. My intestines are doing the crushing of my SMA. I am seeing a surgeon Friday. I don't know if CVS caused this, or if this caused my CVS, or if I don't have CVS, however I know this cycles with my period. I don't think SMA would do that. Did you have a clear cycle of triggers for your cyclic vomiting or was it pretty regular vomiting?