1. < Digestive Health

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?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 18, 2018
In reply to @astaingegerdm "I was diagnosed with MALS 3 years ago and had release of the ligament. Initially fine..." + (show)
@astaingegerdm

I was diagnosed with MALS 3 years ago and had release of the ligament. Initially fine but symptoms recurred. A stent was placed and I have been fine since. Interesting though is the fact that 4 years prior to surgery there was an abnormal Doppler ultrasound that was not followed up with CT angio.
It can be difficult to sort out GI problems if there is more than one issue- I have IBS, post cholecystectomy syndrome, GERD, SIBO and nonspecific autoimmune disease after collagenous colitis I am so much better now after a few months treatment with immunosuppressives. I also have learned to manage SIBO and GERD.

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Welcome, @astaingegerdm. Thank you so much for sharing your history.

You might also wish to read some of these conversations about SIBO on Connect, https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/. If you are able to share, I'm certain that members in that discussion would appreciate hearing about your health journey, especially about learning to manage SIBO and GERD. We look forward to getting to know you.

REPLY
jmmb | @jmmb | Mar 18, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

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Thank you @rosemarya . I have been going to Mayo for quite awhile now. I go to the AZ clinic.

REPLY
jmmb | @jmmb | Mar 18, 2018
In reply to @plucky "Hi Kari and Group, I just joined this discussion group, and have had 4 CTA scans..." + (show)
@plucky

Hi Kari and Group,
I just joined this discussion group, and have had 4 CTA scans since 2013 that all show I have MALS.
The problem I need help with now is: whether to treat it; and how to find the right doctors.
Celiac artery stenosis showed up on scans for something else in the US in 2015 and was told to seek immediate treatment.
At the time I actually lived in Canada where as far as I can tell, they don't recognize MALS as an illness. I was declined any treatment, and instead patted on the head a lot, told the celiac artery stenosis was not treatable, sent to dieticians, offered PPIs, etc for symptom management. I was diagnosed with ME/CFS and am now on disability for that.
Now I live in the USA and have a vascular surgeon who doesn't want to treat it unless I am losing weight, can't eat, and am vomiting.
The problem is that these are not the symptoms that are debilitating for me.
My problems are: recurrent diarrhea, recurrent viral and bacterial gut infections, must spend most of my days in bed or resting, constant gut pain, POTS, PEM, general malaise, mental fog/sluggishness, food allergies. I can't make any plans or socialize because I almost always have to cancel at the last minute, and am unable to work.
It seems a pretty long list of barriers to functioning that seems to relate back to my diagnosis of MALS.
How do I proceed? Forget about treatment and just cope, as suggested? or push on and look for a different specialist?
Your thoughts?
Thank you...Susan

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@plucky you sure have had your share as well. Good for you to get out of a negative environment. My parents were supportive, problem was after my first surgery my dad suddenly passed, of course I was devastated and my mom had beginning signs of Alzheimer's. My 2 sisters were like, well your off you take her.....yea off because I just had an open surgery and was just using a walker to get around...plus they decided to say I was taking money, they were not happy my dad left me POA and all....well that may be why my dad did that....anyway, then my mom passed from a stroke, I think she was heartbroken without my dad, and my sisters pissed her off....my mom was a crackup....so I had to get out of there. to many horrible memories. I have two wonderful children who have been so helpful, and my husband. Of course all that stress didn't help that situation...oh boy sorry, I am going on. I get so angry cause I wonder how my health would be if it wasn't for all that, 3 years of hell. That has a huge toll on the body. But I am trying....I know it is so hard to know what symptoms are from what. So many overlap. I did try all the diets, none really worked, but then again could have been because of the MALS. Also you can blame so much on the CFS....I just keep researching. The more knowledge you know the better. If you find a dr. that dismisses you and that knowledge, you need to go somewhere else. Unfortunately I have had that and I am sure almost all of us have, but don't let them win. You know your body. I was up and down with the anemia. I took supplements though and now ok. A lot of my blood work comes at like the highest or lowest range number so its not flagged so they say it's ok, so I don't know. I don't think that is ok. If a number is that close and your symptoms go with that, there is probably something wrong/off. Everyone is not the same and fit in a box. A lot of the naturalpathic drs. believe that but the problem is insurance doesn't cover them a lot of the time. I did go to one for awhile, but had to stop due to money issues. So I know you are in Canada so I don't know how that would work there. I don't know if I answered your questions. A lot of people have different symptoms for MALS, but most common are the pain after eating, bloating. Some people don't have compression, but the nerves are being pushed on by the diaphragm. If you go onto MALS PALS you can get a lot of information there. I am trying to also find a online support group for ME/CFS. If you know one let me know. Hang in there. It is a long process, just try to stay positive and when you find it to hard reach out to someone on here, I am on a lot or just message me . I know it is hard and sometimes you just want to say I give up, but you can't!!!
Jill

REPLY
jmmb | @jmmb | Mar 18, 2018
In reply to @plucky "Hi Kari and Group, I just joined this discussion group, and have had 4 CTA scans..." + (show)
@plucky

Hi Kari and Group,
I just joined this discussion group, and have had 4 CTA scans since 2013 that all show I have MALS.
The problem I need help with now is: whether to treat it; and how to find the right doctors.
Celiac artery stenosis showed up on scans for something else in the US in 2015 and was told to seek immediate treatment.
At the time I actually lived in Canada where as far as I can tell, they don't recognize MALS as an illness. I was declined any treatment, and instead patted on the head a lot, told the celiac artery stenosis was not treatable, sent to dieticians, offered PPIs, etc for symptom management. I was diagnosed with ME/CFS and am now on disability for that.
Now I live in the USA and have a vascular surgeon who doesn't want to treat it unless I am losing weight, can't eat, and am vomiting.
The problem is that these are not the symptoms that are debilitating for me.
My problems are: recurrent diarrhea, recurrent viral and bacterial gut infections, must spend most of my days in bed or resting, constant gut pain, POTS, PEM, general malaise, mental fog/sluggishness, food allergies. I can't make any plans or socialize because I almost always have to cancel at the last minute, and am unable to work.
It seems a pretty long list of barriers to functioning that seems to relate back to my diagnosis of MALS.
How do I proceed? Forget about treatment and just cope, as suggested? or push on and look for a different specialist?
Your thoughts?
Thank you...Susan

Jump to this post

Sometimes I find even water to be so difficult. When I have really bad pain, like my chest pain, I drink some water and makes it so much worse!!! Strange things we have...

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 23, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

Jump to this post

@jmmb, I hope it is okay if I tag you when I see a question about the AZ Mayo Clinic location. Rosemary

REPLY
jjren | @jjren | Mar 26, 2018

Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for MALS.

REPLY
2 replies
plucky | @plucky | Mar 26, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

Jump to this post

Sometimes my replies this past week were blocked by the website, anyone else have this problem? I'd like to reach out to learn more about programs at Mayo in Arizona for MALS. It looks like some of you have experience with them, can you let me know who to phone there to find out more?

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Mar 26, 2018

I do, but I believe it is due to a blood pressure medication and menstrual cycles. Do you have it on both feet or just one? That is important to know. This link maybe helpful: https://www.mayoclinic.org/symptom-checker/foot-swelling-or-leg-swelling-adult/related-factors/itt-20009075

REPLY
2 replies
roisemaire | @roisemaire | Mar 26, 2018
In reply to @kariulrich "I do, but I believe it is due to a blood pressure medication and menstrual cycles...." + (show)
@kariulrich

I do, but I believe it is due to a blood pressure medication and menstrual cycles. Do you have it on both feet or just one? That is important to know. This link maybe helpful: https://www.mayoclinic.org/symptom-checker/foot-swelling-or-leg-swelling-adult/related-factors/itt-20009075

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Hi could you please stop sending me continues emails

REPLY
plucky | @plucky | Mar 26, 2018
In reply to @jjren "Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for..." + (show)
@jjren

Has anyone diagnosed with MALS experience ankle/foot swelling? I don't see that as a symptom for MALS.

Jump to this post

I have ankle/foot swelling sometimes, also forearms and abdominal swelling. I'm post-menopausal and have low blood pressure. Do you have more than ankle/foot swelling, are other areas affected as well? We think it is related to MALS and/or ME/CFS circulatory and vascular problems rolled into one. I am just starting to have more assessments.

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