1. < Digestive Health

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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 7, 2017

Hello @momofsmaswarrior,

I can only imagine how difficult it must be to see your daughter battle this condition, and I'm so glad you've come to the Connect community to seek support.

I would sincerely encourage you to call Mayo Clinic's appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. If you call the number on this Request an Appointment webpage, they will ask you a few questions, and specialists will guide you through the process. In some situations, Mayo Clinic experts can review a case before seeing the patient.
You can also view more details about 'Getting the first appointment' from this discussion: http://mayocl.in/2iNdgpc

I do want to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report. Here's a complete listing of all the Gastroenterology & GI physicians: http://mayocl.in/2iWMn6e
And, if you'd like to learn more about the Department of Vascular and Endovascular Surgery, click on this link: http://mayocl.in/2i3qYIS

In the meantime, I'd like to introduce you to our Mentor, @kariulrich who has much experience with MALS, and I hope @sbraudrick13, @ej9718. @jobones94, @smfjf101, @malaki, @tracys, @annewhit, @katiesmom, @manzfield, @tford0722, will join this conversation as well.

@momofsmaswarrior, do share more of your daughter's story; we are here to help. What have you tried for relief, and how has she been coping thus far?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 9, 2017
In reply to @malaki "wife test show SMA syndrome looking for surgeon at mayo clinic because so rare.any suggtions she..." + (show)
@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 @tracys,

We were wondering how your mother is doing? Did she get seen at Mayo Clinic?
Do keep us updated, and we hope all is well.

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amyk811 | @amyk811 | Mar 14, 2017
In reply to @kanaazpereira "Hello @sawatzky,Welcome! I'm sorry about your son's diagnosis; it is so hard to see your children..." + (show)
@kanaazpereira

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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Hi. I have SMAs and I live in Houston, Texas. I was diagnosed about a year ago--so many hospital Drs went back and forth through Ct scans etc. it was a nightmare. I also have crohns have have had chronic cdiff. My GI confirmed my diagnosis once and for all by presenting my case at a radiology conference. We are currently seeking out surgeons, whom he suggests and has spoken with about my case, to do surgery. I'm meeting with one on march 15. Background--I don't have a large intestine anymore...my GI wanted me to have SMAs surgery during 2nd colon surgery, which was done in October 2015 by an excellent surgeon--but surgeon did not want to do the surgery then because he was afraid of risks etc. please respond to me here or I'm not sure how else you can contact me--I just created this user name to contact you. I know this is very scAry and not having answers or people who know what's going on is even more terrifying.

I am 28 years old and my dr is at memorial hermann in the medical center. His name is Andrew DuPont and he's an amazing dr on all levels. Intelligent, kind, incredibly compassionate, and up to date with the latest treatments for GI issues. He even conducts research with the UT physicians network and has many "fellows" residents who are completing their GI speciality, who work below him--learn fr him and I think this gives him a unique perspective because he's always up to date on the newest treatments etc and you have more eyes looking at your case. I urge you to make an appointment with him. Do you live in the Houston area? Sometimes appointments have to be scheduled far out--if you experience that problem, contact his nurse and leave a message explaining the severity of your sons condition etc to get bumped up.

I have had crohns since I was 11---been in and out of hospitals and through Drs etc. I feel this gives me pretty high standards when it comes to doctors and I fully trust Dr. DuPont more than I have ever trusted anyone else. I would recommended him to everyone. He's amazing and he will never dismiss pain and symptoms etc. he looks to find answers and solutions. Please contact him!! Xx

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 14, 2017
In reply to @kanaazpereira "Hello @sawatzky,Welcome! I'm sorry about your son's diagnosis; it is so hard to see your children..." + (show)
@kanaazpereira

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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Welcome to Connect, @amyk811,

Thank you for sharing your history; I'm sure that @sawatzky, and other Connect members on this discussion, will appreciate all the information. We are so glad to know that you've found a physician you are comfortable with, and can trust; that in itself is a big step towards feeling better, isn't it?

I'm sorry to learn about the Crohn's disease diagnosis, and I would sincerely encourage you to take a look at Mayo Clinic's IBD blog on Crohn's Disease and Ulcerative Colitis: http://ibdblog.mayoclinic.org

Let us know if you have any questions, @amyk811, and keep us updated about your appointment too.

REPLY
sierranichole | @sierranichole | Apr 6, 2017

has anybody here had experience with a doctor or surgeon who will go straight to surgery rather than forcing conservative treatment? I'm a 21 year old girl and this condition has absolutely ruined my life. my doctor continues to prolong conservative treatment despite the fact that gaining the weight has not helped me the slightest bit. ive lost the weight again due to symptoms that continue to persist and never went away with weight gain. i never even had a weight loss prior to getting sick with SMAS. do you know of any mayo clinic locations or surgeons/doctors who prefer to treat this condition with surgery rather than force conservative treatment? this has gone on way too long, Ive taken a leave of absence from college, moved out of my apartment and live home with my parents who literally have to care for me because i'm vomiting constantly, i can barely keep liquids down. i am desperately seeking surgical intervention, this is so scary and no way to live. i want my life back. any help would be so greatly appreciated !!!!!

REPLY
1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 8, 2017

Hello @sierranichole,

I'm so sorry to hear about your struggles and frustrations! And glad that you've found the Connect community.

If you would like to make an appointment at Mayo Clinic, you can call or request an appointment online here: http://mayocl.in/1mtmR63.
If you call the number on this webpage, they will ask questions to help direct you to the best specialist, either at Mayo or closer to home.

In the meantime, I hope @sbraudrick13, @ej9718, @malak,i @smfjf101, @jobones94, @mattis1bestyahoocom, @annewhit @katiesmom @manzfield and the others will jump back into this discussion.
Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report. Here's a complete listing of all the Gastroenterology & GI physicians: http://mayocl.in/2iWMn6e

@sierranichole, did you doctors give you an explanation as to why they are reluctant for you to undergo any surgery? I realize that this is frightening and that you're doing all that you can; we're here to help.

REPLY
amyk811 | @amyk811 | Apr 26, 2017
In reply to @ch246cf10 "Hello, I'm just north of you in Round Rock. Austin doesn't see the volume of any..." + (show)
@ch246cf10

Hello,
I'm just north of you in Round Rock. Austin doesn't see the volume of any rare medical condition. In 2005 I was diagnosed with an Aortic Aneurysm, and the details of my condition were never experienced by the Heart Hospital in Austin. Memorial Herman in Houston had seen my exact situation before. They saved my life. In short: Travel to the experts.

Of course, forums like this didn't exist in 2005 either. Kudos to Mayo for bringing folks together to better understand their situation, and to meet others that have similar life experiences.

Bruce
Texas

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I feel the exact same way...I've had crohns since 2000 and back then we had NO info or research and I didn't know a single person with an autoimmune disease, let alone crohns. now I can meet people online and even watch surgeries on google. I'm so glad you had a good experience at memorial hermann and that your life was saved!!!

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amyk811 | @amyk811 | Apr 26, 2017

I urge you to come to houston when you have the chance. Memorial hermann in the medical center is an excellent hospital and many specialists here. Feel free to
Message me.

REPLY
amyk811 | @amyk811 | Apr 26, 2017
In reply to @sierranichole "has anybody here had experience with a doctor or surgeon who will go straight to surgery..." + (show)
@sierranichole

has anybody here had experience with a doctor or surgeon who will go straight to surgery rather than forcing conservative treatment? I'm a 21 year old girl and this condition has absolutely ruined my life. my doctor continues to prolong conservative treatment despite the fact that gaining the weight has not helped me the slightest bit. ive lost the weight again due to symptoms that continue to persist and never went away with weight gain. i never even had a weight loss prior to getting sick with SMAS. do you know of any mayo clinic locations or surgeons/doctors who prefer to treat this condition with surgery rather than force conservative treatment? this has gone on way too long, Ive taken a leave of absence from college, moved out of my apartment and live home with my parents who literally have to care for me because i'm vomiting constantly, i can barely keep liquids down. i am desperately seeking surgical intervention, this is so scary and no way to live. i want my life back. any help would be so greatly appreciated !!!!!

Jump to this post

It depends on if you have what they consider to be "true" SMAs or not. Also, a general surgeon is who performes SMAs, not a colorectal surgeon ((which by the way GI doctors don't even know)). This is such a rare condition and very controversial...I have seen several surgeons who wanted to resolve my other issues before addressing my SMAs and now know this is causing me problems. I haven't lost weight because of it but experience vomiting, nausea and severe pain. I have to watch my diet anyways and eat "soft foods" or liquids and have had to because of my crohns for 17 years...so maybe that's why I haven't lost weight. And from other meds like steroids...but my GI knows this is causing me pain as does my current surgeon. GI has been pushing for this surgery since I was first diagnosed...they have to measure the "angle" to determine if this is true SMAs and the angle needs to be below 18 degrees to be considered true SMAs. You should get relief from vomiting and nausea post surgery, but you can still have pain for some time. The surgery my surgeon does is a bypass surgery, not gastric bypass--but it bypasses the mesentheric artery. I have not had my surgery yet but will keep you posted. They don't want to do surgery if they don't believe it will help you...but many surgeons are honestly timid to do this surgery either way. Feel free to message me And I'm so sorry about your pain. I have to pop promethazine for nausea like tic tacs... Xx

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jenninaloha | @jenninaloha | Sep 3, 2017

Aloha,
I was diagnosed with SMA Syndrome after years of misdiagnosis. I had surgery, a gastrojejunostomy, at the end of June, which is one of several surgical options. So pre-surgery, I would end up intheER from extreme pain after eating about once a month. Post surgery, I've been in the ER five times in eight weeks. I am absolutely miserable and can barely keep anything down, in level 10 pain almost all day every day, but somehow am healthy enough to not be admitted to the hospital or considered for a tube to help keep me fed, though I keep losing weight dangerously. It seems that no doctor in my state (Hawaii) even knows anything about gastroparesis, let alone SMA Syndrome,because their only solution is to tell me to go to the ER, and of course I end up looking like a "drug seeker". I can't even get any diet info here, pain management info, nothing.

Who has had surgery, and what kind was it? Also, I'm looking at the Phx Mayo clinic... anyone go there? Mahalo for your thoughts!

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