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.

malaki | @malaki | Feb 1, 2016

In reply to @colleenyoung "Hi Malaki, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery..." + (show)

THANK YOU

malaki | @malaki | Feb 3, 2016

In reply to @colleenyoung "Hi Malaki, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery..." + (show)

we have appointment with vascular surgeon at mayo min. next week. 
not a gastrology intestine surgeon. 
it is a artery complex problem which is SMA.

Colleen Young, Connect Director | @colleenyoung | Feb 3, 2016

In reply to @colleenyoung "Hi Malaki, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery..." + (show)

Fantastic @malaki. I'm glad you were directed to the right specialist and that you have an appointment for next week. I look forward to hearing how it goes and what the next steps will be. In the meantime, we'll all be thinking about you and your wife.

malaki | @malaki | Feb 5, 2016

DR. Costopoulos

Hamiltl80 | @hamiltl80 | Feb 9, 2016

In reply to @malaki "wife test show SMA syndrome looking for surgeon at mayo clinic because so rare.any suggtions she..." + (show)

I have SMA and was diagnosed in 2011 and had surgery in 2011. My doctor is at Mayo Clinic Jacksonville, FL and has seen a few patients with SMA and is very experienced in it. Doctor John Cangemi is the GI doctor who handles my SMA care. I don't have the phone number to his office as I schedule everything online. You can send an appointment request online or find a number on Mayoclinic.org. The staff is fantastic and helping you.

Hamiltl80 | @hamiltl80 | Feb 9, 2016

I saw Mayo Clinic MN first and was really not left with much help. I won't go in to details why but I was left looking elsewhere. After talking around the SMA community they led me to the Mayo Clinic Jacksonville, FL. The care received there was care I would have hoped for in MN. I wish you great luck with the MN visit. My home medical team in MI sent me to MN because of the renowned status of their GI department. If you want details feel free to private message me.

Colleen Young, Connect Director | @colleenyoung | Feb 9, 2016

In reply to @hamiltl80 "I saw Mayo Clinic MN first and was really not left with much help. I won't..." + (show)

Welcome back @hamiltl80! Hearing first-hand experience is so important.
You'll notice that I removed your personal email address because I don't want you to get unwanted spam from bots and trolls. You and Malaki can private message each other and safely exchange your email addresses there.

Hamiltl80 - how are you doing since your surgery in 2011?

annewhit | @annewhit | Feb 12, 2016

My 14-year-old daughter was recently diagnosed with SMA syndrome. We live in Salt Lake City and have an excellent children's hospital nearby but I'm not sure they have much experience with SMA. Any suggestions for excellent doctors who treat children? I've heard about a John Alverdy in Chicago. Any thoughts on him or anyone else?

Colleen Young, Connect Director | @colleenyoung | Feb 16, 2016

In reply to @annewhit "My 14-year-old daughter was recently diagnosed with SMA syndrome. We live in Salt Lake City and..." + (show)

Hi @annewhit,
I've moved your message to this discussion thread so the other Connect members can chime in with recommendations. If you would like to ask about care for SMA at Mayo Clinic, you can find information here: http://mayocl.in/1mtmR63

How is your daughter doing?

malaki | @malaki | Feb 16, 2016

In reply to @annewhit "My 14-year-old daughter was recently diagnosed with SMA syndrome. We live in Salt Lake City and..." + (show)

it is my wife not my daughter. she has diverticulum .not sma treating with high powered antibiotics

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