SMA -superior mesenteric artery syndrome

Hello, I'm so very happy to have found this forum. My Father has what I beleive is SMA. Like many of you it's been a long road of failed ER and Doctors visits. If any of you are from the Los Angeles Ca. area or can guide me on how you found a Doctor that reconizes SMA please reply on this board. Thank you, John 

My daughter 11 was diagnosed 2 months ago and continues to have severe abdominal pain. We are currently seeking another GI specialist who will help us. We believe they have not fully diagnosed her. She is still on a NJ line and and is just miserable. We have been told several times "it's all in her head" and to go to counseling. . .It wasn't until she started vomiting undigested food that they took notice. This has been an ongoing struggle with doctors for several years. Thank you!

yes. my daughter has it as well and it has been a rough battle. We live in North Carolina, and had to find a surgeon at John's Hopkins in Maryland to help us. She did well for a year after surgery, but now is starting to have problems with pain again. The nausea and vomting is a constant for her. After the duodenojujenostomy, she was able to start gaining weight and eat again, but continued to have nausea most of the time.  There is a support group for SMA Syndrome on Facebook. FYI. Goodluck. I hope you have better results than us.

hi my daughter lily has been quite ill for 18 months and has finally been diagnosed with this condition but trying to get anything done about it is a nightmare ,after a hospital stay and loads of tests she now has a gastric feeding tube and been told they wont operate and they will give her conservative care which is frustrating as she is so ill and sleeps all the time and in a lot of pain.but we are getting nowhere with the hospitals,

My 13 yr old daughter was diagnosed with SMA and yes she was vomiting then her stomach distended. Would like to here from you to see how she is doing, not sure what we are in for.

My 13 yr old daughter was diagnosed with SMA and yes she was vomiting then her stomach distended. Would like to here from you to see how she is doing, not sure what we are in for.

My daughter was also told at Duke University that she had cyclic vomiting syndrome. They refused to listen to a rural radiologists diagnosis of SMA Syndrome and did not even look at the CT scan that revealed it. A routine upper GI series did not show the classic to and fro motion in the 3rd portion of the duodenum. He had to put her in standing position and have her eat during the xray to show it. It was very obvious. Duke would not accept the film and repeated the series in a traditional position. Johns Hopkins believed the xray immediately and suppoeted us fully. The CT scan was enough to make the diagnosis in the end, along with the symptoms. Some did recommend weight gain before surgical intervention, but it made no difference. Since her surgery, she has gained lots of weight. She continues to have nausea, vomiting, and occasional severe pain, but is much better than before surgery.

Hi...my daughter was recently diagnosed with SMAS and has been advised the same. Boost Plus, Ensure Plus, Scandishakes, food as tolerated. The hope is to gain weight. Have you been successful?

I'm 17 and i just got diagnosed with SMA last week, but my doctor would like to try the feeding tube first because the surgery is risky and she doesn't want to do a surgery on someone that's this young if it can be avoided.

My daughter (mentioned above) is 16 and we have found tremendous information and support on the facebook page for SMAS. They offer valuable advice based on their own situations (not medical advice) and a great list of documents and links. It's been fabulous since we're new to this as well! I have heard privately from one survivor that "reversed" the SMAS after gaining weight. Her biggest piece of advice was to see a nutritionist that specializes in eating disorders and a nutrition therapist, but those that are willing to learn about SMAS. To answer your questions---Yes, our daughter was advised to gain 10 lbs in the next 3 months or the next step would be feeding tube (maybe). And fortunately for R, she has not had a problem with vomiting at all. She has all of the other symptoms, but not that. Her SMAS was also diagnosed after a barium swallow test. Hope this is helpful! But be sure to check out the FB page--it's a gold mine of info. Let me know if you have any other questions.  This is definitely a battle. 

Deb~

Fantastic site and tons of info. my daughter with SMA found this site and it was extremely helpful also watch the YouTube MysteryDiagnosis SMA with Samantha Mina. The SMA site on Facebook is Superior Mesenteric Artery (SMA) Syndrome Awareness Support. (you need to spell it exactly with caps, spaces and all!) .

i also had hat SMA and urgery to correct it there are a limited number of surgeons who can do this procedure, dr john zwiacher in palmer alaksa fixed mine and savd my life b the way i was 29 then and had been vommitting till i turned gray for 7 years. it is life threating and you hould get your daugeter to a qualified thorax surgeon asap- hope thos helps - wendi lelle

you need to go to minnisota or alaka

My 40 year old husband was diagnosed with SMA on October 12, 2012.  He is 6 foot tall and was down to 122 pounds before any of the doctors could figure out what was wrong.  He had a g/j feeding tube placed on August 31, 2012 because he was losing weight so rapidly.  We had already been diagnosed with Pancreatitis, Cyclic Vomiting, Stress, Delayed Gastric Emptying, and Chronic diarrhea.  He was diagnosed after an Endoscopic Ultrasound.  We have refused the repair surgery because of the high mortality rate we found.  He is 100% feeding tube dependent and up 10 pounds from the date we learned what he had.  We have gone to a high protein, high calorie formula and we are doing automatic flushing with his feeding pump so he is getting 100% of his calorie and free water intake daily.  He is just starting to regain the ability to eat without throwing up everything.  His doctors (in Kansas City) are very optimistic that with continued weight gain that he will be symptom free.  They have urged him to gain about 80 pounds.  They would like to see him weigh around 200 pounds for the rest of his life.  He will also need to keep the feeding tube so that if he were to get sick with anything (like the stomach flu or a cold) and he were to not feel good, we could tube feed him to keep him gaining or maintaining weight.I have looked on Facebook for a support group and the only things I can find are a few sights run by young women that talk about their day to day life.  I wish them the best, but that isn't really what my 40 year old husband is looking for.  He would like information about what to expect as life goes on with all the complications of SMA Syndrome.  We have 5 children and wonder if we should have our tall, thin children checked for the defect on the SMA to prevent them from ever getting sick.

I am glad to finally find a site that actually has other folks that recognize this syndrome.

I was recently diagnosed with it myself and they told me that I needed to gain weight to produce a fat pad underneath my artery to lift it off of my stomach. I was sick for over a month before they diagnosed it and I got sick because of a sudden weight loss. I don't know what caused your daughter's to become an issue but there is also surgery that they can do. I hope this helped you a bit. I myself am a 15 year old girl and it can be pretty scary being sick like that. My thoughts are with you and your daughter as she goes through this. I hope she feels better. :)