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Anyone else have Superior Mesenteric Artery Syndrome (SMAS)?
"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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My son had a Ladd's procedure to re-arrange his intestine away from the SMA, yet more than 6 years after the surgery he still has daily pains. 2 years ago he got spinal cord pain pacemaker that helps him a little. I wonder if you heard of other SMA patients that their pain continue post surgery?
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2 ReactionsHello @jeffr, and welcome to Connect. I'm so sorry to hear about your husband's symptoms, but first I want to assure you that no question sounds ridiculous when it concerns your or your loved ones' health. Thank you for reaching out to the Connect community. You will notice that I moved your message to this discussion about SMAS so that you can meet others who know what you and your husband are facing. Please let me introduce you to a few members in this group:
@jenninaloha, @amyk811, @sierranichole, @carolynlivingjaks @malaki, @katiesmom, @hamiltl80, @sbraudrick13, @ej9718, @jobones94, @smfjf101, @manzfield, @tford0722, @danamarie18, this is such a tough journey, and I hope that you and @jeffr connect.
I would also sincerely encourage you to read this published study about "Laparoscopic Management of Duodenal Obstruction Resulting From Superior Mesenteric Artery Syndrome" https://jamanetwork.com/journals/jamasurgery/fullarticle/1919063
@jeffr, while we wait to hear from others, may i ask if the doctor has explained what are the next steps? And, how are you coping with this?
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2 ReactionsHas anyone recently been diagnosed with SMA syndrome pain? If so has anything helped the chronic pain? My son who is 20 and had a Nissan Fundoliplication that was done too tight two years ago. (he has a congenital problem with his stomach) He lost 25 pounds in 3 months. Has since had the Nissen Fundoliplication torn down by Dr. Bowers Mayo Jacksonville and Dr. Bowers put in Aumentation with linxs device to help somewhat of his difficulty swallowing. Dr. Bowers, has diagnosed him with SMA syndrome pain. He is on a GJ feeding tube has gained 10 pounds but is still experiencing daily chronic SMA pain after eating.
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3 ReactionsOh my goodness thanks for the warm welcome!! Finding this group is such a godsend!!
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3 Reactions@jennialoha! Hello and Welcome to Mayo Clinic Connect. I'm sorry to hear you are having a hard time.
Here is a link to the Mayo Clinic appointment line if you are looking to travel here for care- http://mayocl.in/1mtmR63.
I’d like to introduce you to members discussing Superior mesenteric artery syndrome pain here in this thread- http://mayocl.in/2m7sgAw
Meet @hamiltl80, @sbraudrick13, @ej9718, @jobones94, @malaki, @smfjf101, @mattis1bestyahoocom, @annewhit, @katiesmom, @manzfield, @tford0722, @danamarie18, @sawatzky, @momofsmaswarrior. I hope they will join this discussion and share their experiences about SMAS in the hopes that it may help you.
Also, the NIH (National Institutes of Health) has some detailed information about SMAS;, and you can view it by clicking on this link: http://bit.ly/2lIDAXZ
@carolynlivingjaks, can you share with @jennialoha what the doctors recommend to manage the pain and also about surgery?
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2 ReactionsAloha,
I was diagnosed with SMA Syndrome after years of misdiagnosis. I had surgery, a gastrojejunostomy, at the end of June, which is one of several surgical options. So pre-surgery, I would end up intheER from extreme pain after eating about once a month. Post surgery, I've been in the ER five times in eight weeks. I am absolutely miserable and can barely keep anything down, in level 10 pain almost all day every day, but somehow am healthy enough to not be admitted to the hospital or considered for a tube to help keep me fed, though I keep losing weight dangerously. It seems that no doctor in my state (Hawaii) even knows anything about gastroparesis, let alone SMA Syndrome,because their only solution is to tell me to go to the ER, and of course I end up looking like a "drug seeker". I can't even get any diet info here, pain management info, nothing.
Who has had surgery, and what kind was it? Also, I'm looking at the Phx Mayo clinic... anyone go there? Mahalo for your thoughts!
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1 ReactionIt depends on if you have what they consider to be "true" SMAs or not. Also, a general surgeon is who performes SMAs, not a colorectal surgeon ((which by the way GI doctors don't even know)). This is such a rare condition and very controversial...I have seen several surgeons who wanted to resolve my other issues before addressing my SMAs and now know this is causing me problems. I haven't lost weight because of it but experience vomiting, nausea and severe pain. I have to watch my diet anyways and eat "soft foods" or liquids and have had to because of my crohns for 17 years...so maybe that's why I haven't lost weight. And from other meds like steroids...but my GI knows this is causing me pain as does my current surgeon. GI has been pushing for this surgery since I was first diagnosed...they have to measure the "angle" to determine if this is true SMAs and the angle needs to be below 18 degrees to be considered true SMAs. You should get relief from vomiting and nausea post surgery, but you can still have pain for some time. The surgery my surgeon does is a bypass surgery, not gastric bypass--but it bypasses the mesentheric artery. I have not had my surgery yet but will keep you posted. They don't want to do surgery if they don't believe it will help you...but many surgeons are honestly timid to do this surgery either way. Feel free to message me And I'm so sorry about your pain. I have to pop promethazine for nausea like tic tacs... Xx
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3 ReactionsI urge you to come to houston when you have the chance. Memorial hermann in the medical center is an excellent hospital and many specialists here. Feel free to
Message me.
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1 ReactionI feel the exact same way...I've had crohns since 2000 and back then we had NO info or research and I didn't know a single person with an autoimmune disease, let alone crohns. now I can meet people online and even watch surgeries on google. I'm so glad you had a good experience at memorial hermann and that your life was saved!!!
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.