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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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Hi Greg,
I agree, that getting a referral from her physician in Atlanta is probably is a good course of action. I'm so glad that your daughter has both you and her doctor advocating with her.
You may also wish to discuss the frustrating experience you had to the Florida Office of Patient Experience. Please call them during weekday business hours at 904-953-2019.
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2 Reactions@gregh Good to hear Greg. This doctor in Atlanta sounds marvelous. It is hard to find doctors with that kind of compassion and intuitiveness.
We are wishing you and your daughter the best!
Teresa
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2 ReactionsThat is the plan right now. We have already identified all the info that the clinic will want from him to refer her. I know he will do whatever it takes or just about whatever we ask him to do. He is a wonderful doctor. The only doctor that believed her and didn’t give up on her. Ever. I will definitely advise you of the outcome.
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2 Reactions@gregh, Greg
So sorry for your frustration - I hope that her doctor in Atlanta is able to offer some encouragement. Do you think he could contact the doctor at Mayo in FL and make a personal referral/appeal for an appointment for your daughter? Might be worth a try.
Teresa
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1 ReactionI’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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1 ReactionHi 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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2 ReactionsThank 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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1 ReactionHello 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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1 ReactionGood 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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2 ReactionsWelcome, @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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