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mattis1bestyahoocom

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

Posted by @mattis1bestyahoocom in Digestive Health, 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

Tags: sma syndrome, Other

hamiltl80

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.

mattis1bestyahoocom

Posted by @mattis1bestyahoocom, Feb 3, 2012

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

sbraudrick13

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. 🙂

mattis1bestyahoocom

Posted by @mattis1bestyahoocom, May 6, 2012

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

candymarie72

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

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.

Ali Skahan likes this
jobones94

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.

smfjf101

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

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

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

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?

nategilbraith

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

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.

kanaazpereira

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

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

sbraudrick13

Posted by @sbraudrick13, Nov 17, 2016

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.

kanaazpereira

Posted by @kanaazpereira, Nov 18, 2016

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.

xiaright

Posted by @xiaright, Nov 24, 2016

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.

colleenyoung

Posted by @colleenyoung, Jan 29, 2016

Hi @malaki,
Welcome to Connect. I'm sorry to hear about your wife, but glad that you found this group here. You've posted to the right place and hopefully @smfjf101, @jobones94, @mattis1bestyahoocom, @sbraudrick13 and the others will jump back into this discussion.

It must be a bittersweet relief to have a diagnosis, but a journey ahead. How is your wife doing?

Colleen
Connect Community Director

malaki

Posted by @malaki, Jan 29, 2016

like all sma people belly hurts. thanks for reply, looking for surgeon.
going to look at mayo in minnesota.

malaki

Posted by @malaki, Feb 1, 2016

why no reply for help finding surgeoun to treat sma.????????????

colleenyoung

Posted by @colleenyoung, Feb 1, 2016

Hi Malaki,
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.

malaki

Posted by @malaki, Feb 1, 2016

THANK YOU

malaki

Posted by @malaki, Feb 3, 2016

we have appointment with vascular surgeon at mayo min. next week.
not a gastrology intestine surgeon.
it is a artery complex problem which is SMA.

colleenyoung

Posted by @colleenyoung, Feb 3, 2016

Fantastic @malaki. I'm glad you were directed to the right specialist and that you have an appointment for next week. I look forward to hearing how it goes and what the next steps will be. In the meantime, we'll all be thinking about you and your wife.

malaki

Posted by @malaki, Feb 5, 2016

DR. Costopoulos

hamiltl80

Posted by @hamiltl80, Feb 9, 2016

I saw Mayo Clinic MN first and was really not left with much help. I won't go in to details why but I was left looking elsewhere. After talking around the SMA community they led me to the Mayo Clinic Jacksonville, FL. The care received there was care I would have hoped for in MN. I wish you great luck with the MN visit. My home medical team in MI sent me to MN because of the renowned status of their GI department. If you want details feel free to private message me.

colleenyoung

Posted by @colleenyoung, Feb 9, 2016

Welcome back @hamiltl80! Hearing first-hand experience is so important.
You'll notice that I removed your personal email address because I don't want you to get unwanted spam from bots and trolls. You and Malaki can private message each other and safely exchange your email addresses there.

Hamiltl80 - how are you doing since your surgery in 2011?

Colleen
Connect Community Director

annewhit

Posted by @annewhit, Feb 12, 2016

My 14-year-old daughter was recently diagnosed with SMA syndrome. We live in Salt Lake City and have an excellent children's hospital nearby but I'm not sure they have much experience with SMA. Any suggestions for excellent doctors who treat children? I've heard about a John Alverdy in Chicago. Any thoughts on him or anyone else?

rebeccamcroberts

Posted by @rebeccamcroberts, Feb 13, 2016

Hi @annewhit. Welcome to Mayo Clinic Connect. Have you seen the thread on Superior Mesenteric Artery Syndrome? Some of the people there, like @hamiltl80 and @maliki have recent experiences that might be helpful for you to see. When you're dealing with a new diagnosis like your family is, it really helps to connect with other people who have been there.

colleenyoung

Posted by @colleenyoung, Feb 16, 2016

Hi @annewhit,
I've moved your message to this discussion thread so the other Connect members can chime in with recommendations. If you would like to ask about care for SMA at Mayo Clinic, you can find information here: http://mayocl.in/1mtmR63

How is your daughter doing?

Colleen
Connect Community Director

malaki

Posted by @malaki, Feb 16, 2016

it is my wife not my daughter. she has diverticulum .not sma treating with high powered antibiotics

colleenyoung

Posted by @colleenyoung, Feb 16, 2016

Hi @malaki, What a relief it must be to have a diagnosis and treatment for your wife. How is she doing?

katiesmom

Posted by @katiesmom, Mar 3, 2016

My daughter was diagnosed with SMA in December of 2015. We had a consult appointment with Dr. Alverdy in Chicago in January. Personally, I would not choose him as a surgeon. He only gave us a 50/50 chance of the surgery to correct her SMA to work. He left the room during our appointment to discuss my daughter's case with her GI doctor at UofC. It was then decided that my daughter would be put on TPN for a period of time. I did not like his personality and his staff is rude. Not something you want to go through when your child is so sick.

We aren't getting much satisfaction from her GI at UofC either. I don't feel that the team is taking my daughter's symptoms very seriously. Her doctors are hard to get a hold of and they never call back. My daughter had an episode of vomiting for 3+ hours a day for 5 days straight. She was so weak she couldn't get out of bed. I e-mailed her GI 3 times in one day, then the next day and the next day. It took the doctor 2 weeks to get back to me about my concerns. Everything is "hurry up and wait" here. It takes months to get a test taken, and then another month to see the doctor to get the results; it's ridiculous. She had a PICC line inserted and she is on TPN. At first she gained 7 pounds, but then lost 6 when she was so sick for 5 days. She is still on TPN, and has gained a little weight, but her pain, nausea and vomiting have not gone away.

Our to sheer frustration, I went on line and made an appointment request for Mayo Clinic in MH. My daughter's appointment is April 4. I hope I get better results with Mayo Clinic than I have with the UofC in Chicago.

annewhit

Posted by @annewhit, Feb 16, 2016

Colleen, she is not doing very well--has been out of school for four months. Are you able to give me an idea how experienced the Mayo pediatric GI docs are with SMA?

colleenyoung

Posted by @colleenyoung, Feb 16, 2016

Anne, I'm so sorry to hear this.
Unfortunately, I cannot answer questions about Mayo's pediatric GI docs level of experience. But here is information about the Inflammatory Bowel Disease Center for Children including contact information. http://www.mayoclinic.org/departments-centers/childrens-center/overview/specialty-groups/ibd-center-children They will be able to answer specific questions, including expertise with SMA.

@hamiltl80 speaks very highly of the care she receives at Mayo in Florida. Any insights you can give Anne when looking for an experienced specialist?

colleenyoung

Posted by @colleenyoung, Mar 3, 2016

Hi @katiesmom, welcome.
This is such a tough journey to see your child in such pain. I hope that you and @annewhit connect. She, too, has a daughter with SMA.

manzfield

Posted by @manzfield, Apr 5, 2016

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

smfjf101

Posted by @smfjf101, Apr 6, 2016

Hello Amanda,
I'm sorry you are suffering again with symptoms from SMA. My 19 year old daughter had surgery for this. I took her to an ER due to weird uncontrollable vomiting when she stood up. she was admitted and they diagnosed her with SMA. They scheduled laparoscopic surgery for her. She was in hospital for 1 day and it fixed the problem. I don't know why they wait with some people for so long to surgically fix this. She feels much better and no more vomiting. There were some doctors not agreeing on treatment. One said to put in feeding tube one said to do surgery right away. She was of normal weight, so feeding tube seemed like it would not help in the long run. The surgery was done at the American Center which is part of UW Health in Madison WI. No more issues with SMA. I hope you can get some good treatment for the SMA syndrome. I was so pleased with the way my daughters problem was handled and fixed.

Sue

tford0722

Posted by @tford0722, Sat, Jan 7 at 1:33pm CST

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

kanaazpereira

Posted by @kanaazpereira, Sun, Jan 8 at 11:53am CST

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?

danamarie18

Posted by @danamarie18, Aug 6, 2016

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.

aliskahan

Posted by @aliskahan, Aug 6, 2016

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?

manzfield

Posted by @manzfield, Aug 6, 2016

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

sawatzky

Posted by @sawatzky, Nov 29, 2016

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

manzfield

Posted by @manzfield, Nov 30, 2016

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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