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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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Just a quick update.....had our appointment with the doctor yesterday. She is down a couple more pounds and they are scheduling her to get a TPN. Her doctor got all the information I had about the referral and said he was going to get his assistant on it immediately. So we will wait to see what happens. Thank you for the info.....I will update as we get new info. Maybe it will help someone else.....
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3 ReactionsAs an update, it was the Gastroenterology Department that she spoke with that couldn’t/wouldn’t help her. That is one of the reasons this has been so disheartening. I guess we all thought that when they told her to call for an appointment we were on our way to getting healthy. It got her hopes up, only to have them completely destroyed. And this isn’t the first time. She was in the hospital for three weeks last year. That was when we finally got a diagnosis and then she got her feeding tube. Unfortunately, the tube doesn’t seem to be the answer for her. The next procedure is the TPN I guess. Now, I know I’m not the sharpest knife in the drawer, but I would think that a diagnosed case of one of, if not the rarest gastro diseases around would be of interest to someone. At any rate, the appointment with her doctor here is this coming Tuesday. My wife and I both are going with her.
Fingers crossed..........
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1 ReactionHi 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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