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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@jackjack96

I’m 28 years old trans man, and was diagnosed with SMA a month or so ago. There’s definitely something bigger that caused it for me, but the threat the SMA presents on my life is scary. I’ve dropped down to 93 pounds. I cannot eat solid foods, and even the protein shakes that I’ve been getting by with, have started getting thrown up every single time I drink them. I’m in constant horrific pain, some of which is so sudden and so harsh I scream. I’m at a loss, I was told to talk to the surgical unit at the medical facility I go to(only place I can go on that insurance), and I can’t talk to anyone until beginning of April. I’m afraid I’m going to die.

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SMA is a very serious problem. But without my surgery I would not be here now. And trust me open surgery to repair any SMA issues is not fun. I am post 3 years, and having difficulty in maintaining my weight (115lbs. Now. Should be 165lbs.) Recovery was longer then I expected (61 years old at the time of surgery) but a necessary procedure. I 🙏 the best for you! Take care (listen to your Dr.s) and good luck 🤞

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I’m 28 years old trans man, and was diagnosed with SMA a month or so ago. There’s definitely something bigger that caused it for me, but the threat the SMA presents on my life is scary. I’ve dropped down to 93 pounds. I cannot eat solid foods, and even the protein shakes that I’ve been getting by with, have started getting thrown up every single time I drink them. I’m in constant horrific pain, some of which is so sudden and so harsh I scream. I’m at a loss, I was told to talk to the surgical unit at the medical facility I go to(only place I can go on that insurance), and I can’t talk to anyone until beginning of April. I’m afraid I’m going to die.

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I am 28 years old, and have been experiencing some really bad health issues for the last year+. Within this last month, the dramatic weight loss I’ve went through has caused me to develop SMA Syndrome. I am very malnourished, and have a consultation with my surgical unit to discuss possible surgery to fix it. I’m now in a position where I’m not gonna be able to make that appointment, and will have to cancel it. It’s taken months to get where I am now, and this appointment for consultation isn’t even until almost the end of March. I don’t know what to do. Because I’m getting progressively worse every single day.

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My daughter has been vomiting daily for a month and a half, she was diagnosed with superior mesenteric artery syndrome, at the moment we are trying to increase her weight with nutrition, but it is impossible, we were told about parenteral nutrition, is there anyone who did parenteral nutrition and it went well, maybe is there anyone from Greece?

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I was diagnosed with superior mesenteric artery syndrome in May of this year. I need help getting treated. Severe weight loss

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@hamiltl80

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.

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Since you had surgery for SMA how have you been and did it alleviate your symptoms? What type of surgery and how was recovery? What were your symptoms leading up to diagnosis of SMA. Going through all this myself right now

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Yes I was diagnosed with SMAS recently. Was told to gain weight. Really hard to gain weight when you have SIBO and will be testing soon for Gastroparesis. I really don’t feel like eating.

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@hamiltl80

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.

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Possible diagnosis of SMA being referred to Mayo Jax
What were your symptoms and how was the team at Jax and what was the surgery like?

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@colleenyoung

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.

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Colleen,
Can you direct me to the names of Dr's at Mayo Jacksonville FL who would specialize in SMAS and other compressions please. Thank you! Charlene

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Hi..I also have the superior messenteric artery problem. My SMA disected years ago. It is very rare and they watch it with a yearly ultrasound. I fell in my house and hit the dresser that had a sharp pointed end and then my problems began with severe vomiting and pain. Went to the emergency room to be sent home and then they took another look at the cat scan and discovered what the problem was. I was advised to not do any contact sports , and if I ever had severe abdominal pain to get to an ER asap. Kitty2

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