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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jmmb | @jmmb | Jan 11, 2018

Hi I am just seeing this and wondering if anyone has told you this is could be a vascular disease? My superior mesenteric artery and celiac artery were compressed by my diaphragm. Is that what you daughter has going on with the SMA? My GI dr at Mayo really was of no help. My vascular surgeon was excellent. They problem is that along with the vascular issues, I truly believe that it causes all other GI symptoms. If you look at MALS topics and groups you may see a lot of similarities. Well good luck to you, I understand your frustration. I have had 3 surgeries and diagnosis and still not sure of other GI symptoms. You think you find an answer, but then there is something else....Hang in there

Teresa, Volunteer Mentor | @hopeful33250 | Jan 30, 2018

In reply to @gregh "Just a quick update.....had our appointment with the doctor yesterday. She is down a couple more..." + (show)

Hello @gregh

I was thinking about your daughter and wondering how she is doing now. How is she doing with the TPN? Was she able to get an appointment at Mayo?

If you are comfortable providing us with an update, we would appreciate hearing from you.

Teresa

gregh | @gregh | Jan 30, 2018

Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in at Mayo. However she had her TPN pick line put in about three weeks ago. And while it’s early in the process, Shelby has put on about 6 pounds. Doesn’t sound like much to most folks, but to the people on this board they know how important it could be. We had a Sunday family dinner about two weeks ago..........it was the first time in I don’t know how long that I watched her clean her plate. Fried chicken, mash potatoes, biscuits and gravy. Her spirits have been better too.

Like I said, it’s early, I know that. But I’m looking for good anywhere I can find it. We have an appointment with her Gastro on Friday. So maybe there will be more to share.

Thank you so much for thinking about my Princess.

Greg

jmmb | @jmmb | Jan 30, 2018

In reply to @gregh "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..." + (show)

That's great @gregh! I am curious if you don't mind me asking what is TPN. I have been through so many GI drs and tests and never heard of it, or maybe the abbreviation. I posted on Jan. 11 about the possibility of it being vascular and MALS. It is very rare and overlooked. I feel for your daughter so young. Most of the MALS patients are female and young so just a thought. Well good luck to you. You can try calling the nurse of the department and tell them you had a call for an appointment. Maybe that may help better then just going through scheduling. I got through to my dr. once by saying he called and left a message and operator put me through. He did, but otherwise they don't list numbers. You are not lying since you were given an appointment "time". Just a thought. I understand your frustration. I wish you the best

gregh | @gregh | Jan 31, 2018

In reply to @gregh "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..." + (show)

Here is the link. A lot better than me trying to explain it. She is hooked up 14 hours a day. We’re just lucky that her employer allows her to work from a home office. Any more questions feel free to ask. I will respond as best I can.
https://en.m.wikipedia.org/wiki/Parenteral_nutrition
Thank you,

Greg

Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2018

In reply to @gregh "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..." + (show)

@gregh Hello Greg:

Thank you so much for the update! I'm glad to hear that she is doing better. Yes, I believe that a 6 pound gain is worth celebrating!!
Please keep us posted on the progress of your Princess, we are all in her corner and cheering her on.

Teresa

Teresa, Volunteer Mentor | @hopeful33250 | Apr 9, 2018

In reply to @gregh "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..." + (show)

@gregh Hello Greg:

I was thinking about you and your daughter. In your last update she was able to work from home and getting parenteral nutrition. I hope that she is still making progress. Also wondering - was she able to get an appointment with the Mayo doctor in Florida?

I would enjoy hearing from you.

Teresa

nbackes01 | @nbackes01 | Apr 9, 2018

My 16 year old was diagnosed at age 14, required NJ feedings for 2 months, then developed gastric dysmotility issues. Anyway she had a relapse in February, but was able to have a ton of IV hydration and it resolved. Well its back. Is anyone familiar with relapses and prevention? Not getting terribly far with the pediatric GI specialist. They wont admit her and do testing until she essentially looses enough weight, and she has only lost 4 lbs in 5 days this time. First time it was 14 lbs in 10 days. She is an active girl, runs track and plays volleyball. I am hoping to get to see a doc at the Mayo, but until then I hate watching her suffer through this. She can't go to school if she vomits, and is too exhausted from nourishment and vomiting.

kimh | @kimh | Apr 10, 2018

Is this for MP? If so, has she been put on any type of steroid therapy?

Teresa, Volunteer Mentor | @hopeful33250 | May 10, 2018

In reply to @gregh "Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in..." + (show)

@gregh Hello Greg:

I hope that your daughter is still making progress and gaining weight.

I would enjoy hearing from you when it is convenient.

Teresa

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