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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: 10 hours ago | Replies (1156)

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@ukmalsman

Hi @sclindajanssen
Thanks for the info, definitely something he needs to address. I had a rather tumultuous consultation with a gastroenterologist who gave me the diagnosis. 10 years and I finally had a diagnosis especially after being made to feel like a hypochondriac, it was even suggested I had Munchausen at one point. The consultant made a sweeping statement saying she had reviewed the angiogram, but doesn't think the MALs is the cause of the abdominal pain and the organs are getting enough blood from an alternate supply. If I had not been on this website I may have just left it at that, however I had learnt a lot before our consult. I simply asked her what the mean velocity was for the artery. I've never seen a professional flap so much or go bright red as she did. I asked if she had measured using doppler flowmetry (which I knew they had not) or was she making an assumption. To which I got no answer. Just to highlight there are some professionals out there that don't have a clue.

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Replies to "Hi @sclindajanssen Thanks for the info, definitely something he needs to address. I had a rather..."

I am so sorry to hear how they treated you. That’s terrible and hurtful. Unfortunately, many, maybe most, of us with MALs have been treated this way. In the notes a couple docs wrote “anxiety” for me after they dismissed me. Anxiety has never been an issue for me. I was just really sick! Others with MALs have also been labeled with Munchausens and by proxy or anorexia nervous. Some have described medical kidnapping (multiple MALs people from same facility). It’s a real problem. Some docs want evidence for medical diagnosis but need NO evidence for psychological diagnosis, which they use as their wild card when they don’t want to admit they don’t know.

Patients must educate themselves extensively about MALs because many doctors don’t know about it. I’ve searched medical journals but the best MALs info came after surgery when I joined Facebook group “MALs awareness”. They have educational info in the files and learned more about comorbities such as pots, ED, dysautonomia, some of which explained most of the weird symptoms I had. I would recommend you join that before your next apt.

So glad you were assertive and asked questions. It’s hard to find competent MALs docs. Unfortunately, the newest info on MALs is not in the research journals, and that’s all they read.

The MALs awareness group has a list of doctors people have seen for MALs. Dr Hsu in Connecticut is the number 1 expert on MALs surgeries. They all love him!

I wish you well!