Superior Mesenteric Artery Syndrome, and falling apart.

i understand nobody is doing nothing for my ninteen year old grandda we r scared to.

are there no doctors who care if someone dies from this we are so frustrated

I am a 21 year old female and I was diagnosed about a year ago. I live in New Zealand and only one person has had the bowel surgery to fix it. I didn't really want to have a huge surgery with a chance of it not working, so I got my doctor to look at other things it could be. I was getting extreme pain every time I ate so barely ate anything for 6 months. My doctor made me go for a test to check if my gall bladder was working and it looked like it wasn't - with less risks in the laproscopic cholescetectomy I decided to go for it. I haven't had any stomach pains since the surgery but still get vomitting from the SMA about once a month. I can live with that. Most people don't realise that the skinnier you are the worse the effects are so the best thing to do is put on lots of weight until you don't get all the vomitting. Most countries should have a powdered nutritional shake which you can have to help put on weight.

Also have your gall bladder tested because the pains can be identical!

My daughter has SMA as well as 2 other syndromes. I would like to know how u are now. My daughter had the surgery as well.

hi I just wanted to know how you ended up going or anyone else.i just had surgery for my sma just last week.my specialist diagnosed me after a gastroscopy and colonoscopy..after I had been thru all the dietician, ceoliac,.etc stuff.. He wanted another opinion who said he thought it was something else.after about 7 months of tests he decided it was sma aswell. Just seeing what everyone else has done after surgery.

I am 16 years old and was diagnosed with SMA about 2 months after my hospitalization in August of 2012. They concluded I was born with it, and also told me I might grow out of it. I have had an upper GI, abdominal CT scan, and an endoscopy. I feel your pain, and I have nausea almost everyday, even with an acid blocker. I'm now being sent to a nutritionalist to try and gain some weight and figure out what is safe for me to eat, since certain foods (greasy food and red meat) can agravate the symptoms, and I eat small portions about every 2-3 hours I'm awake. My doctor hasn't ruled out sugery for me either. I also naturally do not have the fat pad that is suposed to be between the artery and small intestine, and I also play sports, which makes living with this and having a semi-normal life very hard, but there are ways to manage the symptoms without surgery, like managing your diet and not eating certain foods that are hard to digest (soda, red meat, juices with lots of acid, and greasy foods make me sick). I know at least part of what you're going through and I hope you can find a doctor to help you, I'll pray for you!

Who did you get to do your surgery , we have asked and asked and no one wants to do my daughters surgery , she has been very sick for 2 years now and the last hospitalization she almost died her b/p was 49/26 from dehydration and malnutrition....please help us

This a a very RARE diagnosis. As I have learned. My grand daughter has just been diagnosed with this. I am also trying hard to find a surgeon due to its rarity and if I do I shall post him/her
Take care

Darrin Goodall-Wilson in Geelong. He did the only other one in the victoria region before me, I am the second. Hardly anyone else will do it (as you know). He was absolutely amazing!! Highly recommended!! My mother is also a theatre nurse and works with him so already knew how he worked etc. Where abouts do you live?

Darrin Goodall-Wilson in Geelong. He was amazing!! hardly anyone will do the surgery but I was his second and he is the only one in vic that does it and has also assisted in s.a. my mum is a theatre nurse and works with him so already knew how he works etc. I couldnt recommend anyone better than him. where abouts do you live?

My 12-yr-old daughter had a duodenojejunostomy Jan 24, 2013, for smas. 7 wks post-op she is up 8 lbs, which puts her at 88lbs. This is due primarily to weight-gain drink (Boost, Ensure) and amped up ice-cream shakes. She was 5'2" 93lb when her symptoms became chronic. She was at 80 lbs when she was discharged.  Surgery went fine, care was wonderful, but she has still not been able to experience a regular meal without issue. Still has symptoms.  Doc aware that we are supplementing because she cannot eat a regular meal, even at this point, without pain.  She may need to be scoped to see if an adhesion has formed within the newly routed intestine. Dr. Ravi Radhakrishnan at UTMB Galveston did the surgery.  Great Doc, but she may be in the 30% that this is just not going to work for.  Hate to put her back in the hospital, so, for the time being, she is drinking at least 1500 calories of high-fat/protein drink a day and any food is a bonus. She will be monitored for 2 more wks before a decision to invade her body again is made. Hope to get her up to 110lbs eventually. Good luck with your decisions about surgery.  I don't know if it's right or not, but Dr. Ravi was an excellent doc.  I would still recommend him even if my daughter's condition isn't 100% solved by the surgery.

 

My 19 year old son had the same surgery a year ago and I would be glad to talk to you about our method of treatment for post-op symptoms!

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I have only found on thing that has worked for him!

I've been fighting this i was diagnosed in jan 2009. i was told of surgery, they told me the surgery was nothing it is the recovery that is dangrous, way to much can go wrong. my gastrologist has been sending me too a bigger hospital. who says this is not what i have ,but have too do more testing to find out why i have it. my dr. has done everything he can with what he has . so i made an appt. at another big hospital in another state who can better deal with sma.

I'm a 31 year old female that has been struggling with SMA for about 8 years. I've been hospitalized about 5 times this year alone. I also have Lupus and a rare connective tissue disorder called Ehlers-Danlos Syndrome. Between the 2 diseases I'm in constant pain. My doctors actually told me to just quit working and to find another doctor because they won't do anything but my hands are tied because it's military so it's hard to get off base care approved. I'm constantly needing fluids from the puking and my potassium is always at critical levels and if any of you have ever gotten potassium through an IV, then you understand what an ordeal that is. It's almost as painful as the SMA! My docs also said they wouldn't do anything until i lost a bunch of weight cause i'm pretty normal. My symptoms of SMA come and go so they don't take it seriously. The flare ups are becoming more and more frequent and more and more destructive to my life and sanity. I live in the San Antonio area if anyone has any advice for good docs in the area. I'm sick of being sick! Help!

Dr. Ahmad at UC Hospital in Cincinnati OH