Need Awareness/ Prevention/ Research on 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 ***Visit our sister group, by Samantha Mina: http://www.facebook.com/group.php?gid=170641319067&ref=ts Also go look and my group http://www.facebook.com/group.php?gid=129829963700139&v=info 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

I also have this condition and we need to raise awareness. I have had this condition for around 18 years before it was correctly diagnosed but by the time they found it I was admitted to the hospital with 5 days of testing resulting in surgery to help fix the condition. I also have a Facebook page that is updated with the events that I have gone through and am going through. Each person who has this has a little different set of symptoms and circumstances they go through. Please visit all our pages and learn more about this condition, you could save someone who has this condition.

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@hamiltl80

I also have this condition and we need to raise awareness. I have had this condition for around 18 years before it was correctly diagnosed but by the time they found it I was admitted to the hospital with 5 days of testing resulting in surgery to help fix the condition. I also have a Facebook page that is updated with the events that I have gone through and am going through. Each person who has this has a little different set of symptoms and circumstances they go through. Please visit all our pages and learn more about this condition, you could save someone who has this condition.

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Thanks for your sweet words of wisdom, support and Being my SMA Syndrome Family and Friend!!

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@hamiltl80

I also have this condition and we need to raise awareness. I have had this condition for around 18 years before it was correctly diagnosed but by the time they found it I was admitted to the hospital with 5 days of testing resulting in surgery to help fix the condition. I also have a Facebook page that is updated with the events that I have gone through and am going through. Each person who has this has a little different set of symptoms and circumstances they go through. Please visit all our pages and learn more about this condition, you could save someone who has this condition.

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I am a SMAS survivor. It look the doctors a couple years to figure it out. In January 2011 I had a resection done of my small intestine. I’ve had a lot of complications since but things have deff been improving. I’ve recently decided to start researching/blogging/facebook to spread awareness. When I was diagnosed I felt very alone and the doctors couldnt even give me much information about the condition since it is so rare. Thank you both for posting this. 🙂

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@hamiltl80

I also have this condition and we need to raise awareness. I have had this condition for around 18 years before it was correctly diagnosed but by the time they found it I was admitted to the hospital with 5 days of testing resulting in surgery to help fix the condition. I also have a Facebook page that is updated with the events that I have gone through and am going through. Each person who has this has a little different set of symptoms and circumstances they go through. Please visit all our pages and learn more about this condition, you could save someone who has this condition.

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I’m so happy to here that your getting your life back!!

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I have SMA just diagnosed after 5 yrs. throwing up blood n bile n I am being told to gain weight n then its possible exploratory surgery. Im glad to have a diagnosis but when i get attacks i was done for 21 days throwing up blood n bile couldnt stand or sit up n i lost 15lbs in like 4 days. I wish someone would now two months later, step in and get going on surgery. My entire family thought i was going to die while i was screaming n crying. My children have watched me sick for over five yrs and i dont know if ill survive another attack. Im nervous everytime i eat and I know my body cant take no more. Sitting hunched over with a twice over broken tailbone and saccrum and one time broken neck is not ideal. I’m 24/7 in pain horribly to the point of crying constantly. Just wish some dr. would help me.

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@hamiltl80

I also have this condition and we need to raise awareness. I have had this condition for around 18 years before it was correctly diagnosed but by the time they found it I was admitted to the hospital with 5 days of testing resulting in surgery to help fix the condition. I also have a Facebook page that is updated with the events that I have gone through and am going through. Each person who has this has a little different set of symptoms and circumstances they go through. Please visit all our pages and learn more about this condition, you could save someone who has this condition.

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Hi, I have a friend who’s husband was just diagnosed with this. What is your fb page?

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@jobones94

I have SMA just diagnosed after 5 yrs. throwing up blood n bile n I am being told to gain weight n then its possible exploratory surgery. Im glad to have a diagnosis but when i get attacks i was done for 21 days throwing up blood n bile couldnt stand or sit up n i lost 15lbs in like 4 days. I wish someone would now two months later, step in and get going on surgery. My entire family thought i was going to die while i was screaming n crying. My children have watched me sick for over five yrs and i dont know if ill survive another attack. Im nervous everytime i eat and I know my body cant take no more. Sitting hunched over with a twice over broken tailbone and saccrum and one time broken neck is not ideal. I’m 24/7 in pain horribly to the point of crying constantly. Just wish some dr. would help me.

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I do hope you are feeling better and did find a doctor who can help.
my daughter just diagnosed with smas. Has been throwing up every day for 3 months. can keep down liquids most days. Hasn’t lost much weight due to high calorie drinks mostly. She is in a lot of pain however and in bed most days all day.She is scheduled for surgery next week with general surgeon. Yesterday GI doctor’s nurse called asking her about feeding tube to help her gain weight. I’m not sure how that would help in the long run because her weight would most likely drop back down to her set point of 120’s once feeding tube out. Any help on this would be appreciated.

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wife test show SMA syndrome looking for surgeon at mayo clinic because so rare.any suggtions
she is 73 yr old.suffering for 2 year just now found cause.

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Hi @malaki,
Welcome to Connect. I’m sorry to hear about your wife, but glad that you found this group here. You’ve posted to the right place and hopefully @smfjf101, @jobones94, @mattis1bestyahoocom, @sbraudrick13 and the others will jump back into this discussion.

It must be a bittersweet relief to have a diagnosis, but a journey ahead. How is your wife doing?

Colleen
Connect Community Director

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@colleenyoung

Hi @malaki,
Welcome to Connect. I’m sorry to hear about your wife, but glad that you found this group here. You’ve posted to the right place and hopefully @smfjf101, @jobones94, @mattis1bestyahoocom, @sbraudrick13 and the others will jump back into this discussion.

It must be a bittersweet relief to have a diagnosis, but a journey ahead. How is your wife doing?

Colleen
Connect Community Director

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like all sma people belly hurts. thanks for reply, looking for surgeon.
going to look at mayo in minnesota.

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why no reply for help finding surgeoun to treat sma.????????????

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Hi Malaki,
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.

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@colleenyoung

Hi Malaki,
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.

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THANK YOU

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@colleenyoung

Hi Malaki,
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.

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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.

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@colleenyoung

Hi Malaki,
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.

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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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