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

DR. Costopoulos

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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 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.

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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.

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@hamiltl80

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.

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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

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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?

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@annewhit

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?

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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.

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@annewhit

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?

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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

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@annewhit

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?

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

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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?

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@annewhit

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?

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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?

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@annewhit

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?

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

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@annewhit

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?

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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.

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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.

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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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@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 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

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