SMA -superior mesenteric artery syndrome

Did you have surgery? My daughter is 14 and looking at surgery in her future

my son was just diagnosed with the syndrom after Childrens hospital insisted for days it was just constipation

No way?!!! Our daughter was told the same thing. Until the CT scan revealed an SMA angle of 14*. Which hospital? She saw a surgeon at Children's in Denver that didn't believe her.  :(  By the way, there is an amazing discussion group on Facebook.  I believe the exact name of the group is listed somewhere on this thread.  Sorry I don't have it available right now.   

How are you doing with the weight gain? My daughter (17--diagnosed at 16) was told the same thing. However, due to the nature of this horrible syndrome, she has only lost more. We are looking for a surgeon to finally do the surgery. She is an chronic case, so surgery should be quite beneficial. Do you have any co-morbid conditions? I pray you'll find solutions and be on your way to good health again soon.

The facebook group has MANY adults suffering from SMAS. Many have had the surgery, others continue to battle. But some that have had surgery continue to battle, as well. From what I've learned, the more co-morbid conditions (as those you listed), the tougher it is. I have a 17-year old daughter with SMAS diagnosed back in August. Look for "Superior Mesenteric Artery (SMA) Syndrome Awareness & Support". If not, look for me and I can 'friend' you and add you to the group. My name is Deborah Stoebner Nyenhuis. Praying for healing for your husband! This is a horrible, horrible syndrome.

My daughter, 14, just had the surgery 2 weeks ago (duodnojujunostomy). She was chronic, spending a total of 41 days in the hospital over 3 admissions during the past 12 months. She was at a good weight and ended up back in the hospital with a distended stomach (sloshing noises) and throwing up. Surgery went well, out 9 days post op and is doing GREAT. Surgery was laparscopic.

Contact me if you want to talk. All I read was horror stories till we had surgery, now things are great!!!

hi my daughter is 13 years old and has been under investigation for the last 8 years, and just been diagnosed with SMA Syndrome. Apparently she still has a long way to go and further tests to have. There have been no decisions made yet with regards to surgery. First stage is going to be nasal tebe feeding and TPN bag.

I know of this as my grand daughter has been diagnosed too just recently. What was the out come for you and did she have surgery. If so , who was the surgeon?

Hiya, thank you for replying. We have not had to go through surgery yet as we are at the weight gain stage ( the usual high protein diet, liquids high in fat and concentrated fortisips), if this is unsuccessful we then try nasal feeding and TPN's. The pediatric surgeon in charge of my daughter is a Doctor Kirsty Pringle and the consultant is a DR Pathwarden at the LRI. Hope that may help

I know you wrote about this 4 yrs ago, just wondering how you are doing now. Your post caught my eye since my 17 yr old daughter just had a horrible experience at Primary Children's hospital last week. That is the worst excuse for a hospital I have ever seen! My daughter has been suffering for 9 months & has constant pain in the upper left quadrant. I fought to get her into Primarys thinking that they would be able to finally figure this thing out but it was quite the opposite. The doctors come in there in groups of 4 & act like they are gods or something. I had an article printed out about Celiac Artery Compression Syndrome & they just shot me down immediately without even considering it. We went in the ER since she had lots of blood in her stool & was running a fever, which she never has done in the whole 9 months. They basically said it was "all in her head" & wanted us to see a psychiatrist. We are waiting for the dr to order some tests to see if it could possibly be SMA or maybe the celiac artery. I am interested in what has happened with you & who your doctors are since you live close to us.

Hi Alan, I need to talk my Daughter has been going through this for 2 years now and we were just DX. Alexis is 15 and now has a feeding tube and TPN next. I have consulted with a surgeon that want's her fat pad to build up.. HELP

My DTR is 15 and has had problem's for 2 year's and just recently DX. Can you tell me who did her surgery and if it's still helping I am hoping to get help soon. Thank's Kari

Hi I need to find a surgeon that will do the surgery. My Daughter is 15 and had it for 2 year's. We have the tube and starting TPN. Please let me know what to expect. Thankyou so much. Kari

It would be best to email me, I have a lot of info/experience to share