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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@amandaa

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?

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Thank you, Amanda. I appreciate your help!

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@kjaffee

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!

Jump to this post

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?

REPLY
@kjaffee

Questions for SMAS gut surgeon

Jump to this post

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!

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Questions for SMAS gut surgeon

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@colleenyoung

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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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.

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@kjaffee

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.

Jump to this post

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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@colleenyoung

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?

Jump to this post

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.

REPLY
@kjaffee

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?

Jump to this post

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?

REPLY

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?

REPLY
@jenny42104

Where did you find a surgeon?

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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!

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