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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 4 hours ago | Replies (1229)Comment receiving replies
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.
Replies to "Hi Kari, I just discovered your forum and find it a valuable source of information, especially..."
@azbluebird I apologize that it has taken me so long to reply to you. I have been going through MALS symptoms again and every day is a challenge. I have had surgery twice, this time my symptoms are the same and I have lost 25 pound fairly rapidly. I have had a doppler u/s and CT angio which show all my arteries are flowing. I see my vascular surgeon next week, I suspect we will be doing a celiac block to manage the MALS symptoms. Have you had a celiac block yet? Many surgeons will use that to determine if surgery will be successful, amongst other parameters. I do think you should try and get in with a doctor familiar with MALS. Many of us have multiple diagnoses such as gastroparesis and it is hard to figure out what is causing the multitude of symptoms. I hate to have you wait til you are to the point of being malnourished, as that is very difficult to recover from. (In my opinion, that is not a good approach, I would seek the opinion of a vascular surgeon that works with Mals patients). The whole idea of having intervention is to prevent you from having malnutrition. Again, my opinion as a patient that has been malnourished from MALS.
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Welcome to Connect, @azbluebird.
I'm confident that @kariulrich will reply to you soon. It helps so much to hear from others who have experience with the same condition. In the meantime, I wanted to see if I can help with your questions with respect to getting an appointment at Mayo Clinic. Did you request an appointment at Mayo Clinic Arizona? Mayo does accept Medicare and you are in state. It may be worth trying again. Here is a link to the online form and contact numbers http://mayocl.in/1mtmR63. You can request an appointment yourself or have your doctor call.