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 am reaching out to anyone that knows any Doctors that help with SMA Syndrome. I was just dx with it and I need some treatment plan to get me to stop throwing up.

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@danamarie18

I am reaching out to anyone that knows any Doctors that help with SMA Syndrome. I was just dx with it and I need some treatment plan to get me to stop throwing up.

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Hi @danamarie18, welcome to Connect! I moved your post over to this thread about SMA in hopes that you’ll be able to skim the discussion and find some helpful information. Please meet @mattis1bestyahoocom, @hamiltl80, @sbraudrick13, @candymarie72, @jobones94, @smfjf101, @malaki, @annehwhit, @katiesmom, and @manzfield.

I’m not sure where you’re located, but if you look at one of the comments from @colleenyoung earlier in this thread, she noted that 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. There’s 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.

After your diagnosis, did your doctor discuss next steps or treatment options with you?

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Since my last post in April, I have been doing much better even though I have not been to see a medical professional.
I have completely changed my diet. I pretty much live on smoothies, yogurts, oatmeal, soups..so more or less a liquid diet. I also eat very slow as to not overload my stomach. This might not work for everyone, but it has helped me tremendously with the vomitting and could provide some kind of ease until you get to a doctor or in between visits. My heart is with you! Amanda Field

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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 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

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@malaki

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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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?

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@malaki

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 @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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@malaki

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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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.

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@malaki

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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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?

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@malaki

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! 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

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@malaki

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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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.

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@malaki

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 @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.

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@malaki

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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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.

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My son of 17 was just diagnosed. Does anyone know of an MD that might specialize in this disease in the Houston TX area?

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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?

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@sawatzky

My son of 17 was just diagnosed. Does anyone know of an MD that might specialize in this disease in the Houston TX area?

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I by no means want to seem hopeless, but I’m in Austin, and Brakenridge, the university hospital here, left me pretty hopeless by telling me how excited they were, that I was the first case they had ever seen and they were unsure what to do. They were contacting specialist from all over the world for advice and ended up just putting a suction tube down my throat into my stomach for like 4 days until I stopped vomiting and discharged me with no follow up. Not something you want to hear from the people that are treating you. I’m sure there are more and more doctors treating this disease now that it is becoming a little more known, and I truly believe it is not as rare as thought to be, but misdiagnosed and just hard to find. Each case seems to be so different and has different symptoms. I don’t have continuous lengthy bouts of SMA, I have short flare ups like 2-4 times a year that just last a couple of days. I have luckily been able to control mine with diet, what and how much I eat and have to just stop eating when I feel it coming on.
I just turned 40 this year and am so sorry to hear your young son is dealing with this and I pray he gets the help he needs so he doesn’t have a lifetime of this. The discomfort I now associate with the disease, I realize I have felt off and on my whole life. Being that I can sorta control it and I don’t have insurance, I guess I haven’t been looking for the help like I should, but will have to have surgery at some point. I know others have no control over it and their quality of life gets to the point where they have no choice. If you do find any specialists in this part of the country, please feel free to pass it on and I will do as well.
If there is anything I can do feel free to contact me! Much love and praying for you and your son, Amanda Field

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