Share this:

mattis1best
@mattis1bestyahoocom

Posts: 4
Joined: Aug 16, 2011

Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS)

Posted by @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

Reply


Hamiltl80
@hamiltl80

Posts: 3
Joined: Feb 01, 2012
Posted by @hamiltl80, Feb 1, 2012

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.


mattis1best
@mattis1bestyahoocom

Posts: 4
Joined: Aug 16, 2011
Posted by @mattis1bestyahoocom, Feb 3, 2012

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


sbraudrick13
@sbraudrick13

Posts: 3
Joined: May 06, 2012
Posted by @sbraudrick13, May 6, 2012

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. 🙂


mattis1best
@mattis1bestyahoocom

Posts: 4
Joined: Aug 16, 2011
Posted by @mattis1bestyahoocom, May 6, 2012

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


Candy Marie Kaufmann
@candymarie72

Posts: 1
Joined: Jan 10, 2015
Posted by @candymarie72, Jan 10, 2015

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


ej9718
@ej9718

Posts: 1
Joined: Aug 07, 2016
Posted by @ej9718, Aug 6, 2016

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.

Liked by Ali Skahan


jobones94
@jobones94

Posts: 2
Joined: Jan 30, 2013
Posted by @jobones94, Jan 30, 2013

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.


Km101
@smfjf101

Posts: 2
Joined: Aug 20, 2015
Posted by @smfjf101, Aug 29, 2015

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.


malaki
@malaki

Posts: 7
Joined: Jan 29, 2016
Posted by @malaki, Jan 29, 2016

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.


Hamiltl80
@hamiltl80

Posts: 3
Joined: Feb 01, 2012
Posted by @hamiltl80, Feb 9, 2016

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.


tracys
@tracys

Posts: 1
Joined: Sep 14, 2016
Posted by @tracys, Sep 14, 2016

My 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?


Nate Gilbraith
@nategilbraith

Posts: 47
Joined: Aug 29, 2016
Posted by @nategilbraith, Sep 14, 2016

Hi @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.


xiaright
@xiaright

Posts: 2
Joined: Nov 15, 2016
Posted by @xiaright, Nov 15, 2016

I’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.

Posted by @kanaazpereira, Nov 17, 2016

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?


sbraudrick13
@sbraudrick13

Posts: 3
Joined: May 06, 2012
Posted by @sbraudrick13, Nov 17, 2016

Hi! Sorry you’ve been going through all of this. Feel free to email me if you need someone to talk to. There are also some SMAS support groups on facebook as well that can be helpful.
Take care,
Stephanie

Please login or register to post a reply.