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

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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@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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Sorry for the delayed response…My 17 year old son was diagnosed with SMA about two months ago. During that time he has had no weight gain. He is eating well and bowels are good, but still at a loss on what to do. Really of thinking of scheduling appt at Mayo in Minnesota. We have a gastro doc we are seeing now. He has run tests and cannot determine why no weight gain….We see him again in two weeks…I am scared my son is going to die.

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Hello @sawatzky,

I am truly sorry to hear this. If you would like to make an appointment at Mayo Clinic you can call or request an appointment online here: http://mayocl.in/1mtmR63.
Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery Hospital in the nation for 2016-2017 by U.S. World & News Report.

I wonder if @kariulrich, a Connect Mentor would have some insight for you?

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@sawatzky I am not familiar with SMA, although some of the symptoms overlap MALS. Here is a good link on SMA: https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome

I would recommend finding a doctor that is familiar with SMA. Mayo GI would be a good place to start. I also wonder if Vascular would be involved in anyway if surgery is needed? It sounds like the compression if from two arteries. Was he diagnoses by CT. scan?

I would think it would be imperative to get a handle on his nutrition status and get that under control. That is easier said than done, understandably. When eating causes pain it put you in downward spiral of weight loss and malnutrition. It sounds like his body is not absorbing the nutrients? If he is eating, and having normal bowel movements, is he vomiting? Or complaining of pain when he eats? Does he have nausea, or is he picky about what foods he eats?
Have you supplemented his meals with ensure?

One thing about Mayo is that it is multidisciplinary approach, that is so important when diagnosed with a rare disease.

Thinking of you,

Kari

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@manzfield

I was diagnosed about 3 yrs ago with SMAS. The team at the hospital, in Austin, Tx, had never seen a case, had only read about it and pretty much said they weren’t exactly sure what to do. They said the fatty tissue that holds up the artery to the duodeum was gone so nothing was supporting it up and the circulation was being cut off like a water hose. I had lost so much weight, they thought if they could fatten me up, that the fatty tissie that holds up the artery would come back. After days with suction tube in stomach, IV diet and the vommiting under control, they released me saying i would probably need sugery some day.
I’ve had small bouts and discomfort since then nothing big until last night. There is a certain pain right where the ribs meet that ive had off and on my whole life that i now associate with smas and it is almost unbearable right now along with the vommiting, just like 3 yrs ago.
Do these flare-ups of pain and vommiting eventually pass like last time?
Im up to my neck in hospital bill collections and my credit is screwed, but i know my health is more important. I’ve never reached out to others with this syndrome before and i’m just looking for some advice from others that can relate. Thanks, Amanda

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Hi Sue.

I was just diagnosed and live in Madison, near the American Center. Can you tell me who your daughters Doctor or team were? I am not sure to see general surgery, GI or vascular. I want to work with someone familiar with this illness. Thanks, Tricia

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@manzfield

I was diagnosed about 3 yrs ago with SMAS. The team at the hospital, in Austin, Tx, had never seen a case, had only read about it and pretty much said they weren’t exactly sure what to do. They said the fatty tissue that holds up the artery to the duodeum was gone so nothing was supporting it up and the circulation was being cut off like a water hose. I had lost so much weight, they thought if they could fatten me up, that the fatty tissie that holds up the artery would come back. After days with suction tube in stomach, IV diet and the vommiting under control, they released me saying i would probably need sugery some day.
I’ve had small bouts and discomfort since then nothing big until last night. There is a certain pain right where the ribs meet that ive had off and on my whole life that i now associate with smas and it is almost unbearable right now along with the vommiting, just like 3 yrs ago.
Do these flare-ups of pain and vommiting eventually pass like last time?
Im up to my neck in hospital bill collections and my credit is screwed, but i know my health is more important. I’ve never reached out to others with this syndrome before and i’m just looking for some advice from others that can relate. Thanks, Amanda

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Hello @tford0722, and Welcome to Connect.

I’m sorry about your diagnosis, but want to assure you that you’ve joined a wonderful community to find some answers and support. I’m sure @smfjf101 will return and give you the details you need.

I also wanted 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
Click on this link to learn more about the Department of Vascular and Endovascular Surgery: http://mayocl.in/2i3qYIS

In the meantime, I hope @sbraudrick13, @malaki, @hamiltl80, @tracys, @katiesmom, @ch246cf10, can provide more insight for you.

@tford0722, what symptoms are you experiencing? How are you coping with them?

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I was dignosed with SMAS a few years ago with ups and downs, trying to maintain with what and how I ate, to avoid surgery. Ive tried all sorts of liquid diets, concoctions, eating upside down, limiting portions…Last month my weight got so low, constant pain and vomiting. I tried drinking a glass of water with 2- 3 tablespoons of BRAGGS apple cider vinegar with “the mother” morning and night and within 2 days, the relief was unbelievable. Im not sure how it could help with the obstruction, but apple cider vinegar has amazing benefits for all digestive issues. But it has to have “the mother”. Since then i have put on 15 lbs, eat whatever and have only had discomfort when i miss taking it. Dont want to give anyone false hope, but it seems to work for me and i feel im getting my life back. Just thought i would share in case anyone could benefit. Much love, Amanda

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@manzfield

I was dignosed with SMAS a few years ago with ups and downs, trying to maintain with what and how I ate, to avoid surgery. Ive tried all sorts of liquid diets, concoctions, eating upside down, limiting portions…Last month my weight got so low, constant pain and vomiting. I tried drinking a glass of water with 2- 3 tablespoons of BRAGGS apple cider vinegar with “the mother” morning and night and within 2 days, the relief was unbelievable. Im not sure how it could help with the obstruction, but apple cider vinegar has amazing benefits for all digestive issues. But it has to have “the mother”. Since then i have put on 15 lbs, eat whatever and have only had discomfort when i miss taking it. Dont want to give anyone false hope, but it seems to work for me and i feel im getting my life back. Just thought i would share in case anyone could benefit. Much love, Amanda

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Braggs apple cider vinegar (organic) is great for lots of uses. We have detoxed our home and ourselves. We use it as underarm deoderant and have for several years and it works. You can Google it up on the internet for many, many other uses. I make a homemade salad dressing with it, yogurt and honey – yum.

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Does anyone know if Mayo will review a case without seeing a patient? We are out of state and have had the diagnosis of SMAS confirmed (many, many times) – also has another area of extrinsic compression in the third part of the duodenum (angulated fixed deformity of proximal jejunum of uncertain cause). My daughter is 13 years old has been battling this disease for over 2 years. Had surgery to correct MALS almost a year ago. Mayo has always been known to have the best of the best doctors. I reached out to Mayo a couple years ago about taking a look at her case, but at that time they said they could not help (I am assuming because there were too many things going on and in-conclusive tests?) We are very concerned with knowing what the right thing to do is….I have been “playing doctor” for way too long and would love to have someone who is experienced and EDUCATED on this condition who can offer expertise and actually help my daughter. If anyone has any thoughts, please feel free to share!
*WAY more to her story – trying to keep the post short*

Thank you 🙂

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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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@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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@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

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@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.

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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 !!!!!

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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.

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