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?

@lasirvent

There’s a Facebook group called Mals Awareness that is a wealth of information. I had mad-had surgery in January. They have been my lifeline.

Jump to this post

Unfortunately I’m not a Facebook user, I don’t like the social media scene too much.

REPLY
@astaingegerdm

@jasoncollins – I can’t imagine what your life is like with so many different problems making your life miserable.
I had MALS, operated on in SC. I also have had GI autoimmune disease.
You have two diagnosed autoimmune disorders- the autonomic neuropathy and Hashimoto’s. It is also possible that you have small vessel vasculitis
With one autoimmune disorder you often get more.
There is also celiac disease that could cause many of your GI problems. Many with celiac also have Hashimoto’s. Were you tested for celiac?
I don’t agree with the one doctor that said MALS cannot cause the pain because of collaterals.
I had collaterals too and severe pain.
I have also been told many times it’s all in my head. The only thing wrong with my head was getting upset about undiagnosed misery and losing any social life and friends I had.
I do believe you belong at Mayo. Do you have any doctor that could help refer you?
The doctor could also help list your different problems in order and briefly describe test results, treatments etc.
Please get back to us!

Jump to this post

Yes, I think there is something with small vessel vasculitis. I had to self refer to UCLA vasculitis clinic because no one can do ANYTHING but twiddle their thumbs and tell me how complicated this all is. The Stanford docs are useless. I have a good rheum, but really, how good is she? I don't have the ANCA antibodies but my complements are so low it is sickening. I have been gluten free for a few years (more or less) and every time I eat gluten I get really really sick. So I agree that is one thing, but I also cannot eat fat or protein unless it is plant based. For years I tried those suggested autoimmune diets with good fats and protein….I just got sicker and sicker. And man, did I stick to those stupid diets. Now I can eat mostly well cooked veggies and fruits, but sometimes I cannot eat anything at all.

thank you for acknowledging the "it is in your head" thing. I am so angry and frustrated. My therapist is great, but honestly, she does not even understand what I say. My pcp is pretty good with referrals, useless otherwise, but Mayo told me on the phone last week they would not take me because I have been seen at a Stanford. But Stanford does not seem to have the knowledge or communication to deal with the complexity.

I also have a timeline list of my symptoms, a list of symptoms by system in the body, a picture that was made with diagrams pointing to the areas of my body, a list of diagnoses (most of them have been wrong….90% of what was told to me was wrong…like Reynaud's for years when I had neuropathy). A list of treatments, many of which are difficult to remember, (it has been like 50 different meds) this is my area of weakness with my logging of stuff….mostly because stuff does not work or causes side effects in me (I think it has to do with my sensitive nervous system). I bring these to every appointment and literally all they do is just read the notes the last doc cut and pasted. I have had, when pressed, doctors at Stanford openly admit they never looked at my scans or my chart. Rage does not describe how I feel and every month is different than the previous. The last three have been electric shocks in my abdomen almost constantly. And the docs say, "well, we have done so many tests." So I finally have a consult with the surgeon at Stanford that told me in December that MALS could not be the case (despite from what I can gather I have a very very high degree of stenosis). She said they don't classify the percent, but I don't believe that to be true since just about everyone that sees a doctor with knowledge of this is able to quantify the stenosis. Plus, I have been begging for this GB to be out for a long time, hyperkinetic GB, and was dismissed for a long time until I pushed for a second HIDA scan. First was EF of 85% with reproduction of symptoms and second was 98.3%. Now my gi, who is supposedly "one of the best at what she does in the country" is referring me to surgeon that already dismissed me.

I apologize for the rant. I only have two emotions these days…..rage and despair. Today is rage, which I would greatly prefer over the deep despair.

REPLY
@jasoncollins

Yes, I think there is something with small vessel vasculitis. I had to self refer to UCLA vasculitis clinic because no one can do ANYTHING but twiddle their thumbs and tell me how complicated this all is. The Stanford docs are useless. I have a good rheum, but really, how good is she? I don't have the ANCA antibodies but my complements are so low it is sickening. I have been gluten free for a few years (more or less) and every time I eat gluten I get really really sick. So I agree that is one thing, but I also cannot eat fat or protein unless it is plant based. For years I tried those suggested autoimmune diets with good fats and protein….I just got sicker and sicker. And man, did I stick to those stupid diets. Now I can eat mostly well cooked veggies and fruits, but sometimes I cannot eat anything at all.

thank you for acknowledging the "it is in your head" thing. I am so angry and frustrated. My therapist is great, but honestly, she does not even understand what I say. My pcp is pretty good with referrals, useless otherwise, but Mayo told me on the phone last week they would not take me because I have been seen at a Stanford. But Stanford does not seem to have the knowledge or communication to deal with the complexity.

I also have a timeline list of my symptoms, a list of symptoms by system in the body, a picture that was made with diagrams pointing to the areas of my body, a list of diagnoses (most of them have been wrong….90% of what was told to me was wrong…like Reynaud's for years when I had neuropathy). A list of treatments, many of which are difficult to remember, (it has been like 50 different meds) this is my area of weakness with my logging of stuff….mostly because stuff does not work or causes side effects in me (I think it has to do with my sensitive nervous system). I bring these to every appointment and literally all they do is just read the notes the last doc cut and pasted. I have had, when pressed, doctors at Stanford openly admit they never looked at my scans or my chart. Rage does not describe how I feel and every month is different than the previous. The last three have been electric shocks in my abdomen almost constantly. And the docs say, "well, we have done so many tests." So I finally have a consult with the surgeon at Stanford that told me in December that MALS could not be the case (despite from what I can gather I have a very very high degree of stenosis). She said they don't classify the percent, but I don't believe that to be true since just about everyone that sees a doctor with knowledge of this is able to quantify the stenosis. Plus, I have been begging for this GB to be out for a long time, hyperkinetic GB, and was dismissed for a long time until I pushed for a second HIDA scan. First was EF of 85% with reproduction of symptoms and second was 98.3%. Now my gi, who is supposedly "one of the best at what she does in the country" is referring me to surgeon that already dismissed me.

I apologize for the rant. I only have two emotions these days…..rage and despair. Today is rage, which I would greatly prefer over the deep despair.

Jump to this post

Hi @jasoncollins @jashetta welcome to Mayo Clinic Connect.

Katie, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
– Newly-identified symptoms of left renal vein entrapment syndrome mimicking orthostatic disturbance [Springer] https://link.springer.com/article/10.1007/s12519-012-0349-1

REPLY
@colleenyoung

Hi @jasoncollins @jashetta welcome to Mayo Clinic Connect.

Katie, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
– Newly-identified symptoms of left renal vein entrapment syndrome mimicking orthostatic disturbance [Springer] https://link.springer.com/article/10.1007/s12519-012-0349-1

Jump to this post

that is exactly the article I was going to post….connection with entrapment and endocrine issues! Thank you! It was the only one I could find, but made me wonder if there is a greater connection. Since location of adrenals is fed by some of the vessels many people have issues with besides MALS.

REPLY

We just published my case. In a nut shell, hip dysplasia caused lumbar lordosis which caused my MALS. Had mal surgery at Mayo Rochester with relief of more than 30 symptoms. Hip arthritis worsened lumbar lordosis and MALS symptoms started to return. Hip replacement enabled me to do exercises to straighten my spine, which reduced MALS symptoms. This is the only article in the world that presents multiple management strategies for MALS symptoms. https://www.ejcrim.com/index.php/EJCRIM/article/view/1605/2056

REPLY
@sclindajanssen

We just published my case. In a nut shell, hip dysplasia caused lumbar lordosis which caused my MALS. Had mal surgery at Mayo Rochester with relief of more than 30 symptoms. Hip arthritis worsened lumbar lordosis and MALS symptoms started to return. Hip replacement enabled me to do exercises to straighten my spine, which reduced MALS symptoms. This is the only article in the world that presents multiple management strategies for MALS symptoms. https://www.ejcrim.com/index.php/EJCRIM/article/view/1605/2056

Jump to this post

Incredible. Thanks for sharing

REPLY

I just found out recently that I have to have this surgery done for MALs, I’m 29 married with 2 children and just want to know how was the coping after surgery? Will I be out of work for a long period of time? What can and can’t I do? I have so many questions, supposed to meet with the surgeon soon to go over everything I guess I’m just nervous, and also anyone have this surgery with valvular heart disease?

REPLY

@jashetta – Hi and welcome to MALS group! I found this group after my MALS surgery 5 years ago. I was surprised to find so many of us.
The surgery for me was laparoscopic, but I was told that it may become open if there is a vascular problem. They were able to do surgery through laparoscopy. Recovery time was quick for me- the pain was gone and the only discomfort I had was due to the technical aspects of surgery.
I was 71 at the time- I also have floppy valves. You should check with your cardiologist if you need any special meds.
The very important question you should have for the surgeon is how many he/she has performed. Please get back to us with more details after you meet with the surgeon!

REPLY
@kariulrich

@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would be happy to share any information that would be helpful. Mals in the pediatric population may be a bit different than the adult population. My experience is a bit different as I have an underlying vascular disease. There are two approaches to MALS surgery, laparoscopic and open. I would recommend asking about the pros and cons of both. It sounds like you have opted for the open approach. The open surgery is a long recovery time, for me it was at least a year. This is a small list of things that helped me:

Open MALS Helpful Hints

• No perfume, lotion, hairspray, fabric softener (Smells really bothered me after surgery)

• Needs: 1 size larger underwear and socks, slip on shoes
Loose fitting comfy yoga pants
Undershirt soft to protect clothes from rubbing against the incision

• Several travel size pillows

• Wash everything in dreft before using (My skin was sensitive)

• Unscented lotion for back rubs

• Ice pack help for back pain

• Electronic chair (If you can afford purchasing one, I highly recommend it) Great for sleeping in the first few months or more.

• Foods malt o meal good, pudding, white toast, popsicle, anything easy to digest

• Mask and headphones or ear plugs

• Something from home, small, a stuffed animal anything to keep with you

• Eat slow, very slow If you think you are eating slow eat even slower. Advance diet slowly, VERY SMALL PORTIONS. Use your iPhone during dinner to keep you entertained, yes you should be eating that slow. Eat 1/2 of what you think you can eat. After surgery, there is no longer post prandial pain and your body is malnourished so it is easy to over eat and the fact you want to eat is an amazing feeling in itself. 

Jump to this post

I am having my surgery next week at Mayo can you tell me how long you were in the hospital after yours.

REPLY

@melodie315 – Hi! I see you responded to a post by @kariulrich about surgery. The post you are referring to is from 2017 and Kari has not been active in the group for quite a while- don’t know if she gets the messages.
The hospital stay is usually not more than a couple of days, unless there is something special to monitor.
I stayed a couple of days extra after surgery because I had to be observed for something different. I felt fine when I left.
Good luck to you at Mayo! You will be in good hands. Please report back to us when you feel up to it.

REPLY
Please login or register to post a reply.