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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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Anne, I'm so sorry to hear this.
Unfortunately, I cannot answer questions about Mayo's pediatric GI docs level of experience. But here is information about the Inflammatory Bowel Disease Center for Children including contact information. http://www.mayoclinic.org/departments-centers/childrens-center/overview/specialty-groups/ibd-center-children They will be able to answer specific questions, including expertise with SMA.
@hamiltl80 speaks very highly of the care she receives at Mayo in Florida. Any insights you can give Anne when looking for an experienced specialist?
Colleen, she is not doing very well--has been out of school for four months. Are you able to give me an idea how experienced the Mayo pediatric GI docs are with SMA?
it is my wife not my daughter. she has diverticulum .not sma treating with high powered antibiotics
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?
<p>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?</p>
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?
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.
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1 ReactionI 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.
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1 ReactionDR. Costopoulos
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.