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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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I am considering that now, but due to the present omicron surge, I don't want to travel. In the future as the pandemic changes I would be willing to try a third opinion from a tertiary care center such as Mayo Clinic or UCSF. This is such a rare diagnosis that I am tempted to ignore it, but that would not be wise. How do I go about finding the right center to turn to? What would you do in my situation? Thanks for your reply.
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1 ReactionHave you considered a third opinion elsewhere?
Now I have been told that I probably do not have SMAS, perhaps just malrotation of the duodenum. Does anyone have any input on this? I am now being offered surgery to adjust the bands. How can I be sure that I have received the correct diagnosis??? I don't know what to believe, since I have been given two diagnoses by two OHSU surgeons.
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2 ReactionsThank you, Amanda. I appreciate your help!
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1 ReactionHi @kjaffee, you'll see that I moved your post to the previous discussion you were in. We try to keep like conversations together so anyone replying can go to one central discussion to catch up.
I think a straight forward question just as you posed it would be fine, that you need clarity on the urgency of the need for surgery.
I would also ask, Which dietary modifications are used in the treatment of superior mesenteric artery (SMA) syndrome after surgery?
Is the surgery life threatening?
What is the quality of life after SMA surgery?
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2 ReactionsI will be having a surgery consult tomorrow at OHSU. Similar previous consult resulted in recommendation for laparoscopic duodenojenostomy, but I postponed due to the pandemic. Subsequently, after developing left upper quadrant pain I had another CT, producing a second diagnosis of duodenal malrotation. I am open to all your input as to questions I could pose in order to gain clarity on the urgency of the need for surgery, and what my two diagnoses mean.
Thanks for being here!
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2 ReactionsQuestions for SMAS gut surgeon
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1 ReactionColleen, thanks so much. I think this is exactly the procedure the surgeon recommended when I was diagnosed with SMAS. I am wondering if that is the appropriate procedure for duodenal malrotation. I am glad this resource exists. I didn't plan to have this rare diagnosis, but I know education is key for my decision making.
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2 ReactionsKjaffee, 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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