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

@ch246cf10

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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I 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!!!

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I 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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@sierranichole

has anybody here had experience with a doctor or surgeon who will go straight to surgery rather than forcing conservative treatment? I’m a 21 year old girl and this condition has absolutely ruined my life. my doctor continues to prolong conservative treatment despite the fact that gaining the weight has not helped me the slightest bit. ive lost the weight again due to symptoms that continue to persist and never went away with weight gain. i never even had a weight loss prior to getting sick with SMAS. do you know of any mayo clinic locations or surgeons/doctors who prefer to treat this condition with surgery rather than force conservative treatment? this has gone on way too long, Ive taken a leave of absence from college, moved out of my apartment and live home with my parents who literally have to care for me because i’m vomiting constantly, i can barely keep liquids down. i am desperately seeking surgical intervention, this is so scary and no way to live. i want my life back. any help would be so greatly appreciated !!!!!

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It 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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Aloha,
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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@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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@jamienolson

@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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Oh my goodness thanks for the warm welcome!! Finding this group is such a godsend!!

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Has 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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Hello @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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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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Welcome, @sharronbz, to Mayo Clinic Connect. You’ve come to the right place, as this is where members are talking about Superior Mesenteric Artery Syndrome (SMAS) and perhaps can share some insights with you.

You mentioned a spinal cord pacemaker that helps a little with the pain. Has anything else helped him with the pain at all?

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Good Afternoon Everybody,

My name is Greg and my daughter was diagnosed with SMAS after about a 9 year journey. She was blown off by doctor after doctor till we found a good Gastro here in the Atlanta area. She was told,during the 9 years everything from get counseling for an eating disorder to well little girls can be emotional. I often wondered how some of them made it through to be a doctor. She has a feeding tube in right now, but isn’t tolerating it as well as we had hoped. A British film company did a short documentary on her for YouTube. If anyone is interested you can search Barcroft TV on YouTube and scroll till you see the one about feeding tube. Anyway, to my question. She was accepted as a patient to the Jacksonville Mayo and told to call the last part of November. When she called they said everything was booked though March. They also said they didn’t know when they would open up April or May appointmentsa d they pretty much blow her off. Customer service was, let’s say, less than helpful.

Sooooo…….how do you get through to anyone? You can’t find any direct dial numbers except to make an appointment. So now what? It is so frustrating. She is married and 24 now and still no end in sight. She wants to finish college and have a family. But can’t do it. Can anyone tell me how to get an appointment. There has got to be a way to get through to someone.

Thank you in advance for any help you can give.

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Hello Greg, @gregh

I’m glad that you posted about your daughter’s problems and I’m so sorry to hear about the difficulty she has had in getting an appointment! I’m sure that she would like to be seen as soon as possible. Has she only contacted the Florida location? It may be wise to contact one of the other Mayo locations in Minnesota or Arizona. Here is some information regarding appointments at those locations:

Mayo Clinic in Minnesota 507-405-4733
7 a.m. to 6 p.m. Central time, Monday through Friday

Mayo Clinic in Arizona 888-981-7720 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday

Please keep in touch with us and let us know if she is able to get an appointment at another location.

Teresa

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@hopeful33250

Hello Greg, @gregh

I’m glad that you posted about your daughter’s problems and I’m so sorry to hear about the difficulty she has had in getting an appointment! I’m sure that she would like to be seen as soon as possible. Has she only contacted the Florida location? It may be wise to contact one of the other Mayo locations in Minnesota or Arizona. Here is some information regarding appointments at those locations:

Mayo Clinic in Minnesota 507-405-4733
7 a.m. to 6 p.m. Central time, Monday through Friday

Mayo Clinic in Arizona 888-981-7720 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday

Please keep in touch with us and let us know if she is able to get an appointment at another location.

Teresa

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Thank you for the quick response. She hasn’t tried the other locations yet. We were hoping for the Florida location because we found a doctor there that has done some work with SMAS patients. And I guess after this long journey to this point, we wanted someone with experience.

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Hi Greg,
@hamiltl80 shares similar experiences to your daughter until she was well treated both medically and as a person at Mayo Clinic Florida. I hope she’ll return to share her experiences with you.

If your daughter is Mayo Clinic patient, you can manage appointments through the patient portal. Is she registered with Patient Online Services? https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

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@colleenyoung

Hi Greg,
@hamiltl80 shares similar experiences to your daughter until she was well treated both medically and as a person at Mayo Clinic Florida. I hope she’ll return to share her experiences with you.

If your daughter is Mayo Clinic patient, you can manage appointments through the patient portal. Is she registered with Patient Online Services? https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

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I’m not sure what her official status is. She was told a few months ago that they wouldn’t see her till she had been off pain meds for 30 days. When she was able to do that, she called back and they said ok, call the end of November for appointments in Feb. she called the end of November for her appt in February and was told February was full. Ok, she asked when can I call for March. The less than helpful person on the other end said she didn’t know and couldn’t help her. So she doesn’t have any appointments to manage. I can’t find any hardline numbers to call for assistance. Just the appointment number. And we already know that’s useless. I guess I was expecting a little more from the Mayo Clinic. Won’t let that happen again.

Have an appointment with the wonderful doctor who believed her and stuck by her till we got a diagnosis in Atlanta next week. Maybe he knows what to do….

Frustration continues to build…..

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