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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: Oct 29 2:54pm | Replies (1225)

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@azbluebird

Hi Colleen, I have been trying to get an appointment at Mayo Clinic Arizona since 2013 with my doctors approval and suggestion. It took 3 gastroenterologists 2 1/2 years and me getting down to 94 lbs before my doctors finally figured out it was gastroparesis of unknown origin (not diabetic). Now I have even more unclear and different opinions on what additional tests might be helpful, which new conditions I have, and whether I should have surgery for MALS and other stenosis. My GI doctor said I would have to lose 25-30 lbs before she would send me to a general surgeon. That would mean I would be down to 78 lbs. Scary!! She had already told me 1 1/2 years ago not to come back because she couldn't help me further. She said my PCP could write RX's for Domperidone, Tramadol, Zofran, and Linzess. Two weeks ago my PCP said to go back to her any way because I could see her quicker as a "former" patient. PCP was concerned I had pancreatitis again and needing immediate attention.

I called the Arizona phone number in your furnished link and was told again that since I have Medicare (and United Health Care Plan F which pays above the medicare approved amount), that the GI department is not taking any more Medicare patients. Each time I call I ask about getting on a waiting list and they have no list and I was told there would probably never be an opening. I asked her if it would help for them to know that I worked for Mayo in the past before I retired. She said no unless I had the Mayo retirement insurance which I don't. I also have been a former patient at the Scottsdale and Fountain Hills clinics as well as at the hospital but that didn't matter either. Being in state didn't seem to help either.

Her only recommendation was to call Rochester and see if I could get in there. That is really upsetting to a 32 year Arizona resident that knows plenty of part-time winter visitors on medicare that goes to Mayo. When I worked there the ratio of out of state vs in state was high but might not be readily obvious because they use their temporary Arizona address. Many live closer to Rochester during the summers and yet I would have to go to Rochester?

Sorry if I displayed my level of frustration in trying to get good medical advice on conditions that are rare-ish. I have been told before by specialist that they only treat the common conditions within their specialty.

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Replies to "Hi Colleen, I have been trying to get an appointment at Mayo Clinic Arizona since 2013..."

Hi @azbluebird,

I'm so sorry that you are not getting any answers; I know how frustrating this can be!

I'd like to direct you to some relevant links that might help:

Patient Account Services is Mayo Clinic's customer contact center to answer your billing inquiries and resolve appointment issues: http://mayocl.in/2sMZ4D1

Billing and Insurance helps you work through the insurance process with your insurer and with Mayo Clinic.
http://mayocl.in/2kk2hF8
You may also wish to view these conversations in the Visiting Mayo Clinic group on Connect:
Medicare and Mayo: http://mayocl.in/2iss7GB
Insurance Question: http://mayocl.in/2tFVNpn
Getting your first appointment: http://mayocl.in/2iNdgpc

I am so sorry to hear this and I too would be upset. You need to be seen and if there is someone in Arizona that is familiar with MALS you should not have to travel to Rochester. I did look at a list of physicians from another support group (MALS/PALS on Facebook). These are peer recommended doctors and found someone in Arizona:
Richard Harding: http://www.azassociatedsurgeons.com/richard-harding.html
It looks like he does lap not open surgery, that may be a start? I do not know him and again it is a from a patient list.

I hope that Mayo gets this Medicare situation figured out. It is frustrating for many patients.
https://www.facebook.com/groups/105633382202/10155264954027203/