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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Amanda Burnett | @amandaa | Dec 2, 2021

In reply to @kjaffee "I will be having a surgery consult tomorrow at OHSU. Similar previous consult resulted in recommendation..." + (show)

Hi @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?

kjaffee | @kjaffee | Dec 2, 2021

In reply to @amandaa "Hi @kjaffee, you'll see that I moved your post to the previous discussion you were in...." + (show)

Thank you, Amanda. I appreciate your help!

kjaffee | @kjaffee | Dec 30, 2021

In reply to @colleenyoung "Kjaffee, while we wait for others to chime in, I wonder if you might find this..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Jan 6, 2022

In reply to @kjaffee "Now I have been told that I probably do not have SMAS, perhaps just malrotation of..." + (show)

Have you considered a third opinion elsewhere?

kjaffee | @kjaffee | Jan 6, 2022

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.

kjaffee | @kjaffee | Jan 24, 2022

In reply to @colleenyoung "Have you considered a third opinion elsewhere?" + (show)

I have considered a third opinion, but am hesitant to travel. My original surgeon returned from leave and I spoke to her last week. It seems a 5/20 CT clearly showed the duodenum behind the SMA. The 11/21 CT shows the duodenum has moved, indicating malrotation. Possibility of exploratory laparoscopy. I have been told duodenum should not move. Help! I have increasing LUQ pain that may not be related.

Colleen Young, Connect Director | @colleenyoung | Jan 28, 2022

In reply to @kjaffee "I have considered a third opinion, but am hesitant to travel. My original surgeon returned from..." + (show)

I can understand your reluctance to travel right now. Fingers crossed that the trend for omicron case is on the downward curve for real. It sounds like you're back in the hands of someone you trust and with whom you have good rapport. Will you schedule an exploratory laparoscopy?

kjaffee | @kjaffee | Jan 28, 2022

The plan is to have esophageal manometry, and repeat upper GI, which are scheduled in February. When we have information from those tests, and if indicated, I will schedule laparoscopy. Since CTs show the duodenum in two separate places, I think that is reasonable. I am concerned about growing discomfort in my LUQ. How rare is a "very mobile" duodenum?

kjaffee | @kjaffee | Mar 15, 2022

In reply to @kjaffee "I have considered a third opinion, but am hesitant to travel. My original surgeon returned from..." + (show)

Update on my quest for diagnosis. Subsequent CTs have shown that I do not have SMA Syndrome. Apparently I have duodenal malrotation. Does anyone know anything about that? I have a super mobile duodenum. I have now been diagnosed with esophageal dysmotility for which I have upcoming tests and consult with ENT and speech therapy. I am on a course of Flagyl for SIBO, another new diagnosis. If the Flagyl does not improve my symptoms a diagnostic laparoscopy may be in the near future.

Does anyone have any input for me? I am overwhelmed with diagnoses (also Zenker's diverticulum and hiatal hernia. I feel like a mess. I don't any longer understand how to think of my own health. Plus pain in my left upper quadrant is becoming more pronounced and no one can tell me why.

Many questions. No answers yet.

??????

kjaffee | @kjaffee | Mar 25, 2022

In reply to @kjaffee "Update on my quest for diagnosis. Subsequent CTs have shown that I do not have SMA..." + (show)

I was really hoping for some input here from the Mayo folks...

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