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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Amanda | @manzfield | Nov 30, 2016
In reply to @sawatzky "My son of 17 was just diagnosed. Does anyone know of an MD that might specialize..." + (show)
@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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BruceS | @ch246cf10 | Nov 30, 2016

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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1 reply
sawatzky | @sawatzky | Jan 5, 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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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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 6, 2017

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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Kari Ulrich, Alumna Mentor | @kariulrich | Jan 6, 2017

@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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tford0722 | @tford0722 | Jan 7, 2017
In reply to @manzfield "I was diagnosed about 3 yrs ago with SMAS. The team at the hospital, in Austin,..." + (show)
@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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 8, 2017
In reply to @manzfield "I was diagnosed about 3 yrs ago with SMAS. The team at the hospital, in Austin,..." + (show)
@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

Jump to this post

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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Amanda | @manzfield | Jan 28, 2017

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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1 reply
wandering | @wandering | Jan 28, 2017
In reply to @manzfield "I was dignosed with SMAS a few years ago with ups and downs, trying to maintain..." + (show)
@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

Jump to this post

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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momofsmaswarrior | @momofsmaswarrior | Feb 7, 2017

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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