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Anyone else have Superior Mesenteric Artery Syndrome (SMAS)?
"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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Kjaffee, while we wait for others to chime in, I wonder if you might find this study helpful to read.
- Laparoscopic Management of Duodenal Obstruction Resulting From Superior Mesenteric Artery Syndrome https://jamanetwork.com/journals/jamasurgery/fullarticle/1919063
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1 ReactionI would like to know how these diagnoses relate to each other. I have had abdominal CTs before as well as two colonoscopies and endoscopies. I am 74. How could this just be found now? How urgent is this? It seems so rare and complicated.
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2 ReactionsHi Kjaffee, welcome. You'll notice that I moved your question about SMA to this existing discussion about Superior Mesenteric Artery Syndrome. I did this so that you can connect with other members like @jenninaloha @sharronbz @gregh @jmmb @carolynlivingjaks @jcvece @lasirvent @granma, who can share their experiences and help you know what questions to ask the surgeon at you appointment tomorrow.
I think your first question about whether the duodenal malformation and SMA syndrome are related is a good question to start with. What other questions do you plan to ask?
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2 ReactionsI was just diagnosed with duodenal malformation via CT. Two years ago I was diagnosed with SMA Syndrome. The two diagnoses seem to be related. I have an appointment with a gut surgeon tomorrow for clarification. Any input from anyone out thete?
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1 ReactionThis was in 2014 and I was in Tucson AZ. Dr. Michael Mills at UMC, but he is now at Baylor in Texas. Karou Goshima took over and I really liked her as well. I am in Phoenix now though, and I see Dr. Davila at Mayo, vascular surgeon. He has done a few balloon angios on me. I love him!
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2 ReactionsWhere did you find a surgeon?
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1 ReactionThere’s a Facebook page with tons of information and support for SMAS and also a page for MALS-MALS awareness.
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2 Reactions@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.
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1 ReactionHi. 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
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1 ReactionI’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?
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