Median Arcuate Ligament Syndrome (MALS)

Hello everyone..I am 22 years old and I was recently diagnosed with MALS with greater than 70% stenosis at the origin of the celiac artery.. the U/s states the velocity goes up to 304 cm/sec when I sit up.
I have began having a hot bursting pain through to my back the past week, it feels like im laying on a really hot heating pad. I havent been able to eat more than a couple little bites during the day and have lost over 10lbs. I cannot stand for more than 10mins without having to lay down because of pain.
My insurance doesnt want to pay for out of state healthcare and my doctor isnt willing to go to the medical board, the doctor they are assigning me has experience with gallbladder removals, not mals.
I was wondering if anyone else had had to pay out of pocket and how much surgery happened to cost you? Also, had anyone else had the hot bursting pain inbetween their shoulder blades?
I am trying to come up with the money to go to Cleveland to see their doctor, When I tried to use Mayos cost estimator tool I couldn't find MALS.
If anyone could give me more info about Mals and if they ever had stenosis, I have so many questions and nobody is giving me answers.

Thank You,
Sarah

That is very interesting and worth mentioning to your physicians. I would describe to the doctors what you stated above. I have not heard of chiropractic adjustments leading to MALS, however there is more to be learned about MALS. The vascular disease that I have is called Fibromuscular Dysplasia (FMD), and there has not been an established correction between MALS and FMD. I found it interesting about the chiropractic adjustment, because patients with FMD have to be careful with adjustments, especially around the neck area, as there is a greater risk for arterial dissection. It does make you wonder how many MALS patients use Chiropractors and if anyone else has had a similar event. One question I have is what brought her into the chiropractor to begin with? I believe some people will experience MALS pain with exercise. My pain would show up after I ate a meal or while running.

At around my daughter's 13th birthday we both had Chiropractic adjustments that were quite hard in our mid spine area. It was a Locum covering for our regular chiropractor . We both came home and iced our backs and felt nauseous and thought we were coming down with something. Mine went off after a few days. Her nausea never disappeared. She will be 16 in May. So I have wondered if part of that was coincidentally hormonal as things certainly changed for her around the age 13 or if it could have been caused by the adjustment, and she had some anxiety and learning challenges brewing and it all kind of hit at once

Hello @jamorris9,

I see that our Mentor @kariulrich has shared some great information; I also wanted to welcome you to Connect, and let you know how glad we are that you've come here to find some support.

I hope @lmtuska will also join in with some insight. What symptoms did your daughter have, @jamorris9?

When one starts to loose weight it happens rapidly, at least it did for me. I was an adult size 12 normally went down to a size 2 shorts falling off my hips. She sound like she is a survivor!!! I am impressed so happy she is going to prom! (Hope we get to see some pictures 🙂 !!! We are hear cheering for you! You all got this! Hang in there, NJ Tube and all! Hugs, Kari

I am very curious if you think something triggered it for your daughter? I there an event that you remember? Nothing can be ruled out, as a cause, although some believe we are born with the defect, I do not now if there is another trigger, or if it gets worse as we grow. I do wonder if hormones play a role or another environmental factor. Please know this is just guesses on my part, but parents really know there kiddos best, very curious to hear your thoughts. The only other thing I can think of is second hand smoke, I have never smoked in my life, but both my parents did when I was going up.

For me I was diagnosed as an adult, although I had always had stomach issues at a young age. I do not know one specific event, at least one that I can recall. My weight loss and postpandrial pain was never understood until I had my first cath angiogram at Mayo for an underlying vascular disease. That is when the severity of the stenosis was noted, and at the time I was drinking ensure to keep my energy level up. I spent many days in bed, because of lack of energy, deconditioning and malnutrition. Since my surgery I have been able to eat without pain, and my energy has improved some.

Hi, my 15 year old daughter is going to be scheduled for the CT angiogram to check for MALS. I am curious to know if there was a certain incident that triggered the beginning of MALS symptoms for you.

I am glad you will be going to Mayo, and yes I was able to eat again after the surgery. It was a big adjustment, because I had not post prandial pain and I would over do it. When you over eat too fast it gives you bowel issues (diarrhea), so be prepared to have her take things slow. Have been pain free for over a year, and I have gained back all the weight I had lost. I was fortunate not to have a NG tube, but my diet before the surgery left me malnourished. I could not tolerate food, but would drink sips of ensure or bites of a cookie through out the day. I called it the cookie diet because I could only tolerate carbs. Please tell your daughter I am thinking of her and we are here for both of you! @lmtuska are you coming from out of state, or are you in Minnesota? Will you be going to the clinic first or hospital? The reason I ask is because if you will be at the clinic for appointments and additional tests, your daughter may become very tired in between. There are patient quite rooms at the clinic on the subway level down the hall from the information desks. I would use them a lot, they have reclining chair and blankets and the rooms are kept dim. Hang in there!

No there should not be a connection between the two.