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Median Arcuate Ligament Syndrome (MALS)
I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?
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Thank you for sharing some very wise insight, @joant10. I sincerely believe that most doctors want to do a good job and help their patients as best they can, and we can maximize their (doctors') ability to help by also taking responsibility for our own care.
There is a saying, often quoted in medical school: "A patient's body frequently fails to read the textbook."
@joant10, we're so glad you've joined this discussion; may I ask what brings you to this group?
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1 ReactionThank you @kanaazpereira . I just don't like to cause any problems. I don't want anyone to get 'in trouble' if you know what I mean. I will call and ask about the collaboration part though. Like I have said, I do love my vascular surgeon. Maybe I can get another opinion from the GI dept. and that would make me feel better.
Thanks again.
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1 ReactionDo you think they gave you Toradol? That is an anti-inflammatory given for pain.
Hi Kari, yes I think they did, then they gave me oxycodone. I feel better, but still achy all over. I am getting more chest pain again, and light headedness and tingling in fingers and toes. I posted another post that I am going to my surgeon WED and was hoping he can push up my cardiologist appt. Also wanted advice on how to ask why aren't the drs. collaborating??? I thought that was the point of Mayo. Love my vascular surgeon, so I am researching and making a list of questions for him. I am afraid though they just don't have answers. Hope you are doing better!
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1 Reaction@jmmb There is a GI doctor at mayo rochester who understands the vascular nature of MALS, but I have seen several also who are not familiar with this diagnosis, but with that said they are specialist and usually hand you back to your primary. In my experience GI does not follow chronic MALS, however they should be communicating with your team of physicians. I believe that since MALS is so rare there is not a good understanding of the disease, especially when all of our GI test come back normal. It can be quite frustrating. There has to be a better way to educate our physicians and specialist in what we experience. MALS dramatically affects the quality of life many of us lead, and it can be quite severe at time. What makes this diagnosis difficult is that some MALS patients do not have symptoms return, unfortunately for those of us who are chronic MALS patients we become more complex to treat. What I recommended is keep communicating with all specialist and advocating for yourself, tell them your concerns as you stated here. I do not know of one physician who would be opposed to hearing your frustrations and your experience. I have always shared the good and bad with my doctor's, you would be surprised how open they can be once they have a complete understanding of the problem.
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1 ReactionThank you @kariulrich. by the way my name is Jill. I just got done joining facebook and the MALS pals. I never had a facebook page because of being a teacher and all the kids kept asking me if I had one and wanting to write me. I didn't want any issues, take any chances , with the way the world is today unfortunately, so I would just give them my school email. I miss them....Anyway, I feel so old not knowing how to navigate the site!!!! I totally understand what you are saying. I guess deep down I was hoping, wow Mayo, I'll go there get answers and be fixed!! Yeah right!! At least I understand more about MALS that is for sure, but mostly from you and others on the site, and of course research. This site has been wonderful in that I know I am not alone, or crazy or a hypochondriac. I just feel that the surgeon is really focused only on the vascular part, even though it does effect the GI stuff so they should work together. I was thinking of asking for another GI dr. there for a second opinion. I am in Arizona and I couldn't make a trip to Rochester, but I have heard their GI is the best....Well thank you again for your advice and support. I will see what happens on Wed.'s appt.
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2 ReactionsThey should be collaborating with one another, make sure you let them know you expect that. Sometimes they do talk to one another before and after appointments through a different messaging system than the portal. Always let them know that it is important to you that they touch base with your team of doctors. I ask at the end of my appointment for them to update my team if I feel that it is important that my entire team knows. Many times my specialist will look at notes prior to me following up.
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2 ReactionsRight now Kari I only have the Vascular surgeon and the GI fellow. Last appointment the vascular surgeon said he would try and talk to the attending dr. in the GI dept. He also said he was not to fond of the dept. (kind of on the side). I had sent messages through the portal to ask what happened and never heard back. Last week I sent him a message and he called me the next day, so I am not sure what happened with the other messages, but I will definitely bring that up Wed. Once I get a cardiologist involved I for sure expect them to collaborate. I will discuss this with the surgeon. Do you have a primary dr. at Mayo that oversees it all? My primary is wonderful, but she is not with Mayo so it is hard for her. Thanks
Curiosity about what other people are experiencing, and maybe connecting with others with the same kinds of situations. Always interested in medical matters.. JTB
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1 ReactionMy daughter has gone through two laparoscopic surgery to release celiac artery, first at Washington Medical DC (June 2013) which really helped her for almost 30 months and pain started again. Second laparoscopic surgery was performed at Cleveland clinic (Nov 2016) which helped her another 10 months and has started the same symptoms of Nausea, vomiting and losing weight.
would like to know if anyone has more information on treatment after two surgeries.
Thanks