Median Arcuate Ligament Syndrome (MALS)

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.

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain - the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn't find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn't see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren't rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

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.

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain - the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn't find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn't see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren't rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!