Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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?

@jamorris9

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.

Jump to this post

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.

REPLY
@kanaazpereira

Hello @lmtuska,

I’m sorry to hear about your daughter’s diagnosis, but so glad that you’ve come to the Connect Community.
MALS is such a rare disease, and because of the variety of symptoms, it can often be misdiagnosed. I’m confident that @kariulrich will join in with some answers and insight about her experience with MALS. I would like to tag @afternoonnapper1 too, who had discussed blockage of the celiac arteries, in the past.

In the meantime, I would also encourage you to read this article about research done at Mayo Clinic which discusses the effectiveness of endovascular repair involving branches of the celiac and superior mesenteric arteries: http://mayocl.in/1OS5tAf

@lmtuska, if you have any questions about coming to Mayo Clinic, please feel free to ask; we are here to help you. How has your daughter been coping with this condition, especially with regard to eating?

Jump to this post

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 ­čÖé !!! We are hear cheering for you! You all got this! Hang in there, NJ Tube and all! Hugs, Kari

REPLY
@jamorris9

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.

Jump to this post

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?

REPLY
@jamorris9

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.

Jump to this post

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

REPLY
@jamorris9

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.

Jump to this post

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.

REPLY

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

REPLY

Hi Sarah, Welcome to Mayo Connect! I have had MALS surgery twice, the last time was a little over a year ago. I would be happy to try and answer your questions or help point you in the right direction. One comment I have is I highly recommend if you do need surgery have it done by a doctor and staff that is very familiar with MALS. It is a very specific surgery and takes the skill of vascular surgeon that is familiar with the disease. I have had pain between my shoulder blade with MALS, but I also have a vascular disease. MALS pain is a pain that needs to be ruled out, so what that means if you are experiencing pain especially in the area you described it is important to have a thorough cardiac and GI work up. As far your doctor not going to bat for you to get you the best care… get a new doctor, one that understands that an experienced vascular surgeon is needed. May I ask what state you are in?

REPLY
@kariulrich

Hi Sarah, Welcome to Mayo Connect! I have had MALS surgery twice, the last time was a little over a year ago. I would be happy to try and answer your questions or help point you in the right direction. One comment I have is I highly recommend if you do need surgery have it done by a doctor and staff that is very familiar with MALS. It is a very specific surgery and takes the skill of vascular surgeon that is familiar with the disease. I have had pain between my shoulder blade with MALS, but I also have a vascular disease. MALS pain is a pain that needs to be ruled out, so what that means if you are experiencing pain especially in the area you described it is important to have a thorough cardiac and GI work up. As far your doctor not going to bat for you to get you the best care… get a new doctor, one that understands that an experienced vascular surgeon is needed. May I ask what state you are in?

Jump to this post

Thanks so much for touching base. My daughter, Sarah, had her CT angiogram last week to rule out MALS and it came back negative which is a bit disheartening. She has had constant nausea for almost 3 years now. She has been scoped and all is clear and has been tested for food sensitivies. They are now thinking it is like a phantom limb pain where she has GI pain from a previous trauma of partial fecal impaction. Anyine have other ideas? I grew up in Rochester and trained at Mayo but we live in Canada. I am trying to think whether it is worth bringing her for further tests.

REPLY
@kariulrich

Hi Sarah, Welcome to Mayo Connect! I have had MALS surgery twice, the last time was a little over a year ago. I would be happy to try and answer your questions or help point you in the right direction. One comment I have is I highly recommend if you do need surgery have it done by a doctor and staff that is very familiar with MALS. It is a very specific surgery and takes the skill of vascular surgeon that is familiar with the disease. I have had pain between my shoulder blade with MALS, but I also have a vascular disease. MALS pain is a pain that needs to be ruled out, so what that means if you are experiencing pain especially in the area you described it is important to have a thorough cardiac and GI work up. As far your doctor not going to bat for you to get you the best care… get a new doctor, one that understands that an experienced vascular surgeon is needed. May I ask what state you are in?

Jump to this post

@jamorris9 Did your daughter Sarah have a Cath CT Angio? I am so sorry to hear about her constant nausea and pain. My initial diagnosis was on catheter angiography which showed severe celiac stenosis. I can only speak from my experience, I had MRI/MRA a Functional “Stress” MRI/MRA they all came back normal. (This was prior to my second mals surgery). I know cath based angiogram is more invasive however it may be a route to considering given her past medical history.

REPLY
@lisa01

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!!

Jump to this post

MALS PALS has been the most informative group we have found and up until recently all we knew about but we also recently found a new group online not on Facebook called MALS Support. Its just a website forum.. I think thats the name of the website too but can’t remember. Maybe do a google search for MALS Support and it should come up not sure… Other than that it has been really hard to find support. I highly recommend the that forum because I don’t like my friends seeing what I am posting on Facebook. Its too personal. I wish there was more information out there but its been hard. I have had two procedures already and this isn’t a easy topic to find doctors that understand it.

REPLY
@lisa01

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!!

Jump to this post

Thank you for the information. I prefer MayoConnect because the way it is set up and monitored. I find the MALS group here to be respectful. Hope you will join us here!

REPLY
@lisa01

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!!

Jump to this post

I think I have searched prior but nothing ever came up or I would have been on sooner. Thank you for the welcome. I also may have been searching by a different name. Had to learn a bit. I always called it CACS (Celiac Artery Compression Disease) and was of course told I had celiac disease etc… All the common stories.

REPLY
Please sign in or register to post a reply.