Anyone else have Superior Mesenteric Artery Syndrome (SMAS)?

Posted by mattis1best @mattis1bestyahoocom, Aug 16, 2011

"With only about 500 reported cases in the history of English-language medical literature, recognition of SMA syndrome as a distinct clinical entity is controversial, with some in the medical community doubting its existence entirely. SMA syndrome is also known as Wilkie's syndrome, cast syndrome, mesenteric root syndrome, chronic duodenal ileus and intermittent arterio-mesenteric occlusion. It is distinct from Nutcracker syndrome, which is the entrapment of the left renal vein between the AA and the SMA.

SMA syndrome is estimated to have a mortality rate of 1 in 3. Delay in the diagnosis of SMA syndrome can result in fatal catabolysis (advanced malnutrition), dehydration, oliguria, electrolyte abnormalities, hypokalemia, acute gastric rupture or intestinal perforation (from prolonged mesenteric ischemia), gastrectasia, spontaneous upper gastrointestinal bleeding, hypovolemic shock, aspiration pneumonia, or sudden cardiovascular collapse from increased velocity of bloodflow in the SMA due to the reduced mesenteric angle. Go here to this link to know about my fight http://rare-disease-day-belfast-2011.blogspot.com/2011/02/paula-mattis-is-real-super-hero-she.html

Superior mesenteric artery (SMA) syndrome is a very rare condition characterized by recurrent vomiting, abdominal distention, weight loss, and postprandial distress. The cause is compression of the duodenum between vessels and the vertebrae and paravertebrae muscles when the angle between the superior mesenteric vessels and the aorta is lower than 18°. The diagnosis is difficult and usually is made by exclusion. Conservative management is helpful at first; however, symptom recurrence would indicate surgical treatment. EVERY LIFE COUNTS Let's get people the Public, Doctors start taking this more seriously and get Awareness/Prevention, researching possible causes and work towards early detection
Thanks, Paula

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jenny42104 | @jenny42104 | Oct 27, 2021

Where did you find a surgeon?

lasirvent | @lasirvent | Dec 25, 2020

In reply to @lasirvent "I’ve just been diagnosed with. MSMAS AD NCP. I DONT KNOW WHERE TO GO FROM HERE...." + (show)

There’s a Facebook page with tons of information and support for SMAS and also a page for MALS-MALS awareness.

Colleen Young, Connect Director | @colleenyoung | Dec 25, 2020

In reply to @granma "Hi. My 13 year old granddaughter was in a serious accident with multiple injuries, internal and..." + (show)

@granma, I can imagine that you and your family are extremely concerned and scared for your granddaughter. I recommend called Mayo Clinic. Click this link for the contact information for all 3 campuses in Arizona, Florida and Minnesota http://mayocl.in/1mtmR63

Here is more information about mesenteric ischemia care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/mesenteric-ischemia/care-at-mayo-clinic/mac-20374998

Thinking of you and your family.

granma | @granma | Dec 25, 2020

Hi. My 13 year old granddaughter was in a serious accident with multiple injuries, internal and external. 3 weeks ago she was diagnosed with SMA was given a feeding tube. They have replaced the tube 3 times, she is still losing weight, she weighs 76 lbs down from 100. She cannot eat by mouth without extreme nausea that leads to vomiting unless her Dad empties her stomach. And her feed tube backs up into her stomach. Now this evening, blood and tissue are coming back through her g tube. Please, we are very scared for her. Can Mayo help her? The dr. here seem unconcerned. Please, any advice would help. Thank you

lasirvent | @lasirvent | Jul 25, 2019

I’ve just been diagnosed with. MSMAS AD NCP. I DONT KNOW WHERE TO GO FROM HERE. My vascular doctor gave me. Orders for an endoscopy but cant Get appointment with a GI until October. I’ve lost 10 lb in the last 3 weeks, I don’t think I can wait anymore-uggestions?

marideth401 | @marideth401 | Mar 1, 2019

For a couple years now, I’ve had postprandial pain and cannot eat a normal size meal, poor gastric motility (resulting in regular use of laxatives), pelvic/flank pain, excessive fatigue. Over the last 8 months, I’ve been diagnosed with MALS, then severe celiac artery compression not caused by MALS or atherosclerosis, then SMA, and MALS was being considered again. Both diagnoses were ruled out and my team of surgeons were befuddled. Upon further testing, they found severe renal vein compression (between aorta and SMA). Duodenum swallow test was normal. The latest diagnosis is pelvic congestion syndrome (ovarian varicose). The surgeon wants to do coil embolization of ovarian vein and asked me about four times when I wanted to schedule this procedure. I was hesitant as, ironically, two of the other surgeons said not to do this procedure because the blood would have nowhere to go except back up to the kidney. My eating problem was lost somewhere along the way. I’m so angry, very depressed, and frustrated that this is where I’m at after dozens of tests!!! Please, if there is anyone out there that has any thoughts on this, I am all ears! Thank you for reading my long post.

Jtimber | @janellearora | Dec 9, 2018

@smfjf101 - Hi Sue, can you tell me who did your daughters surgery in Madison - and what type of surgery she had? I know this is an old post. Hope she is doing well. My daughter has SMAS and we are just looking into surgery. Thanks.

jcvece | @jcvece | Sep 2, 2018

In reply to @smfjf101 "Hello Amanda, I'm sorry you are suffering again with symptoms from SMA. My 19 year old..." + (show)

Sue,

My daughter who is 25 was diagnosed with SMA syndrome 3 years ago after 3 years of being in the Emergency room ever couple months. She is currently in the hospital with a nasogastric tube continually pumping her stomach and a PICC line for intravenous feeding. The situation in the past has always calmed down after about 12 hours in the hospital but this time it hasn’t reset. The doctors all know she needs surgery but say they don’t know anyone who does it. They are willing to give her an outside referral but can’t seem to find a doctor. I there anyway possible for you to forward me your daughters doctors information? I will be eternally grateful. I am happy your daughter is much better and wish her and you the best.

Joe

jmmb | @jmmb | May 14, 2018

In reply to @slballew "My 16 yr old has been diagnosed with this syndrome and docs have her on low...." + (show)

Hello @slballew so what exactly was your daughter dx with? I can tell you no matter what eating very small meals more frequently helps some people. Don't try to eat a 'normal' size meal. Does she have MALS with compression? or nerve? Is it just SMAS? There are a lot of good groups out there to connect with and they share ideas as well. I see there are some on facebook....just an idea

carolynlivingjaks | @carolynlivingjaks | May 14, 2018

In reply to @slballew "My 16 yr old has been diagnosed with this syndrome and docs have her on low...." + (show)

Hi, do you know if they have looked at her esophagus when she swolows food?
My son who is 22 was born with a problem between the spinchter and esophagus. He's had Nissan fundoliplication and Linxs magnetic bead's. He was diagnosed with SMA almost two years ago. He has a feeding tube and had DDJ surgery done back in August of 2017. Which significantly lowered his SMA pain. However, not take it away completely.
He's lost another 8 pounds in 6 months. He is 5"11 and weighs 114 .
We understand, no cure for this. Managing as best as you can.
She may need to stay away from breads, dry meats, anything too dry to be eat.
Good luck. Please let us know how she is doing.

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