SMA -superior mesenteric artery syndrome

Can you give me you'r email? I would love to hear what you have learned. Thank's Kari

My daughter is 12 and was diagnosed with SMA 2 month ago.How is your daughter doing after the surgery now ?

Since the surgery in late November NO problems at all. Normal diet with no restrictions. Actually, she was eating with no restrictions 9 days post op. We know there is a chance of scar tissue forming and again blocking the duodenum but we can't worry about that right now. I wish you the best! If you want to ask more questions I listed my email address earlier in this thread.
Alan81

my doctor said the same thing, iv gone threw many tubes and hospital stays but sadly mine wont be fixed. never give up tho. 

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good luck

Ive just been diagnosed with SMA Syndrome after losing over 60 pounds in less than 8 months. Finally able to keep food down with Reglan (medication for throwing up) as long as i have the physical pain is under control with narcotics & a gal of milk a day, i dont wretch...THATS psinful. I just found a Facebook support page. SMA Awareness. Hopefully i can get some answers. The pain is unreal.

I've been diagnosed with SMA last year. I guess mine is not as bad as other people I read about in this topic, but I am in pain most of the time and it worsens at night. I don't want to have the surgery (yet), but I've done some major changes in my diet. What I found most helpful is keeping me hydrated. From drinking little water a year back, now I drink at least 1.5l of water throughout the day, plus other liquids (soup, home made juices) daily. Making this change improved a lot the way I feel and if -for a reason- my daily water intake drops, I feel it straight away. I guess it has something to do with easing foods' way through intestines and duodenum.

Considering how little is known about SMA, I thought to share this with you, but I need to emphasize that this doesn't have any scientific support, it's just something that works for me.

Anyway, I'd have a question as well, did anyone go through pregnancy whilst having SMA? I would much appreciate if someone would share their experience.

All the best to all of you!

Hi. My grand daughter is going through a terrible time with the recent diagnoses of SMA. She was diagnosed, treated with tpn and lipids... she got better. She relapsed, and cant eat. Now she's at Stanford Childrens Hospital who wants to send her to an eating disorder clinic for rehabilitation .They are saying she has abdominal migraines.... UCSF CHildrens Hospital is who diagnosed SMA and STANFORD is not acknowledging it as a possibility, and they also don't have any of the images from UCSF. My question is do you know of any advocates who might be able to help us in California?

I also have sma and recently have had the horriable most painful corrective surgery ever to fix it. im now 5 weeks after surgery and all symtoms have returned and more.  now my stomach is 10 times the normal size its suppose to be. i normally weight around 110lbs and before surgery i was down to 90lbs,  now need surgery to remove over 75% of my stomach   i have to eat very little but eat every 2 hours,still sick,and cut from top of chest down to bottom!   i wld not have went through this hell if id known what i know now. ur gonna hurt the rest of ur life either way.  i too looked 3 yrs for a dr to see me,   i was his first surgery for sma as well as the first person ever in my state.  very rare.  spent 2 weeks n the hospital and heded back to have stomach surgery

My son was diagnosed after 19 years of pain and no answers! He had surgery in May 2012. email me!!

Hello, my daughter was just dx with SMA Syndrome. She too is an athlete, swimmer. Also a normal weight, 130 and 5'6". She is all muscle with very little fat. She now has an NJ tube but has not been able to eat much for 3 weeks. Although she was dx quickly...we are still quit frustrated. If you have a similar age child, please contact me. We would love to find a few chat friends to help get through this process. She is quickly getting very lonely. Thanks.

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Hello- my 14 year old daughter just dx. Now has a NJ tube for feeding. Continued to be in pain with any food, so as of today- only liquids. Has not even wan anything at all today, even water. Please let us kow who and where your daughter had surgery. We live in the Houston area, but will go anywhere to find a surgeon with experience. Any one else with a good surgical outcome, please let us know. Thanks.

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If you have been diagnosed with SMA you need to go to a vascular surgeon or interventional cardiologist and have a Doppler Untrasound which can determine the angle that the mesenteric Artery is compared to the Aorta.  If the fat pad is to small, then compression of the third portion of the duodenum is the outcome.  This will cause symptoms of pain after eating in the chest area, as well as colic type pain.  If conservative measures do not work, then they can move the duodenum over from the left side to the right so that it no longer is flatten by the SMA.  Another test that can show this is an MRA, also arteriogram (angiogram) which is more invasive.  If it is blocked from an occlusion, you can now have a stent put in it.  There is also a surgery called endovascular and there are disagreements as to whether stenting is better. Generally, the endovascular is better fior long term resolution, but more complicated.  If you have an occulsion (blockage) of the Celiac Artery, then usually there is nothing that need be done if the other two arteries are okay.  The two other arteries will be sufficent for blood and oxygen flow.  Normally, two of the three arteries need to be compromised before there are symptoms.  A stent can be placed in the Celiac artery with good success.  Mayo and St. Vincents and Cleveland Clinic all handle this very rare syndrome/disease.  Don't give up, but don't delay.  The average time it takes to diagnose this syndrome is 18 months.  The real danger is if the intestines decline or server malnutrition occures.  Good luck.

After 6 years of searching, scanning and uneccesary surgies, my wife has been diagnosed with SMA. We recognized her inability to retain solid food years ago and she has been drinking ensure and juices with supplements crushed into them to try and maintain some nutrition. Unfortunately we could now stop the weight loss and she is down to 99 lbs.

Our first attempt to meat with a surgeon has not gone well. I'm hoping someone here has been through the surgery and would be willing to talk with her about the outcome. I am at a loss and don't know what to say to comfort and encourage her. 

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RedViolin - My niece has recently been diagnosed and is struggling a great deal as is her family. I would like to connect if possible to get more information from you! THANK YOU!

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Could u please send me more info and this post, my 2yrold daughter has sma

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