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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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I was just diagnosed with superior mesenteric artery syndrome a little over a week ago in the hospital. I was down to 102 pounds and ended up getting very sick which led to my ER visit and diagnosis. Currently, I am on 24 hour tube feeding and only allowed to consume full liquids. It is very hard to find accurate information on the syndrome so I was very blessed to find this site. I also noticed that there is no support group on Facebook so I started one and was hoping that we could get connected on there so we were able to raise awareness and help support each other. If you search this condition on Facebook, the closed support group page should come up.
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2 ReactionsMy mother was diagnosed with this at the beginning of this year. Her local doctors chose conservative therapy with some success. She is now back in the hospital with a 20 lbs weight loss and we are looking at trying to get her to Mayo under the care of Dr. Cangemi. I have heard he is the best at treating SMA. Any advice or words of wisdom?
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1 ReactionHi @tracys, welcome to Connect! Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2015-2016 by U.S. News & World Report. You can find a complete listing of all the Gastroenterology & GI physicians here http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors
To Request an Appointment, visit http://mayocl.in/1mtmR63 to find the contact phone numbers or use the online form.
I'm tagging @ej9718, @smfjf101, @jobones94, @mattis1bestyahoocom, @malaki and @sbraudrick13 to see if they have any words of wisdom.
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2 ReactionsI've been going to Mayo Clinic in Jacksonville for over a year, I have SMA syndrome but my doctors never agreed with that diagnosis (My local GI diagnosed me) mayo wasted a year for me, wrongfully took me off a feeding tube, and accused me of anorexia, Finally I saw a general surgeon, who spoke to my local GI and now I have the surgery in a few days. I wish I had started out with the doctor you had. I wasted a lot of time, money, and health with Mayo clinic in jacksonville.
Hello @xiaright,
I am sorry to hear about your frustrating experience, and not being able to get the right diagnosis.
As you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I would like to tag @tracys, @ej9718, @malaki, @hamiltl80, @manzfiled, @sbraudrick13, and am confident that they will give you more information on SMAS.
@xiaright, we look forward to getting to know you better; please keep us updated, and let us know how your surgery goes. What symptoms are you experiencing now?
Thanks for tagging me. I haven't been on here in a long time. If anyone needs someone to talk with they can message me privately.
Hi @sbraudrick13,
Thank you for the all the support you are offering @xiaright.
Stephanie, please note that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding and thank you for all your support.
Thank you all so much for the support, I had my surgery 7 days ago, I stayed at mayo for 5 days, and I actually feel worse. I also have gastritis and internal bleeding so my surgeon just discharged me and said to give it time. There is so much more pain, in the beginning drinking water was unbearable and they were giving me morphine to help me cope. I am 21 years old, and I still have to finish my last year of undergrad but it all feels impossible. During my stay at mayo, my GI team did not even once reach out to me, they denied me of SMA syndrome for so long, when all along I knew I had it, and it should be such an embarrassment to them to know I had surgery for treatment of it. Right now, I feel heavily nauseated, pain when I eat, acid reflux, and still recovering from the operation and stitches, I am exhausted at this point.
My son of 17 was just diagnosed. Does anyone know of an MD that might specialize in this disease in the Houston TX area?
Hello @sawatzky,Welcome!
I'm sorry about your son's diagnosis; it is so hard to see your children battle something like this, but we're glad to have you here on Connect. As you will see, we have many members who have discussed SMAS, and will hopefully be able to give you some answers.
@hamiltl80, @sbraudrick13, @candymarie72, @jobones94, @smfjf101, @malaki, @annewhit, @katiesmom, @danamarie18, and @manzfield, do you have any recommendations for @sawatzky?
I'd also like to tag @ch246cf10, @wandering, @texas7777, @patinhou, @bburleson1, @blindeyepug, @liliane, @audrapopp, @chrisl, @wilkins905 who have different conditions, but either live in Texas or have been treated there. I sincerely hope someone here has knowledge of a specialist in Houston.
@sawatzky, could you tell us a bit more about your son's symptoms, and what led to this diagnosis?