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

Interested in more discussions like this? Go to the Digestive Health Support Group.

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.

jenny42104 | @jenny42104 | Oct 27, 2021

Where did you find a surgeon?

jmmb | @jmmb | Oct 28, 2021

In reply to @jenny42104 "Where did you find a surgeon?" + (show)

This 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!

kjaffee | @kjaffee | Nov 18, 2021

I 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?

Colleen Young, Connect Director | @colleenyoung | Nov 18, 2021

In reply to @kjaffee "I was just diagnosed with duodenal malformation via CT. Two years ago I was diagnosed with..." + (show)

Hi 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?

kjaffee | @kjaffee | Nov 18, 2021

In reply to @colleenyoung "Hi Kjaffee, welcome. You'll notice that I moved your question about SMA to this existing discussion..." + (show)

I 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.

Colleen Young, Connect Director | @colleenyoung | Nov 18, 2021

In reply to @kjaffee "I would like to know how these diagnoses relate to each other. I have had abdominal..." + (show)

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

kjaffee | @kjaffee | Nov 18, 2021

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

Colleen, 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.

kjaffee | @kjaffee | Dec 2, 2021

Questions for SMAS gut surgeon

kjaffee | @kjaffee | Dec 2, 2021

In reply to @kjaffee "Questions for SMAS gut surgeon" + (show)

I 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!