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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jmmb | @jmmb | Mar 26, 2018

Hi, I am wondering if anyone that has MALS also has body aches, and bad hip pain? Thanks

jjrenn | @jjrenn | Mar 27, 2018

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

I do have forearm and abdominal swelling, but not as noticeable as my ankle/foot swelling. My doctors also have said heart/circulation issues. I have never had ankle/foot swelling prior to 2015. I have trying to get diagnosed since January 2015 for my abdominal pain. I have an appt with my 4th GI doctor this week and am requesting testing for MALS.

jjren | @jjren | Mar 28, 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 for your symptom list. I have many that are on your list. It is a wonder why more doctors don't consider MALS during your first visit.

Lisa Lucier, Moderator | @lisalucier | Mar 28, 2018

In reply to @kariulrich "I do, but I believe it is due to a blood pressure medication and menstrual cycles...." + (show)

Hi, roisemaire -- at the bottom of any email you receive notifying you of a post in this discussion, you will see "Unsubscribe from this group." If you click there, you can unsubscribe and stop any further notifications.

mandyjunebug | @mandyjunebug | Mar 30, 2018

Hi. I don't have a diagnosis let along surgery. I am just beginning my search. There is something seriously wrong with my stomach this past year and doctors have been unhelpful so far. I have to be extremely careful eating or else i suffer severe pain, feeling overfull, nausea and vomiting. As long as i don't eat "too much" or the wrong thing (pasta liquids are my enemies) i manage to get by without symptoms. Instead of an everyday thing now they come on as attacks when i make a mistake. I have had a lot of abdominal surgeries and a lot of other pain not related to eating. Once i even had a doctor tell me i'd had an omental infarction. But so far none of them have brought up MALS. I want to ask, but its tough sometimes, i don't want to get that look...you know the patronizing one that says they think you should not be looking up your symptoms on google. I would like to see a single one of them suffer even half of what i have suffered and not open up google.

Anyway, if there is a good place for me to find a supportive group of people who may share simlar symptoms, even if not a diagnosis, i would love to hear.

I would really like to look at a plate of food without feeling afraid, but in the mean time it would be nice to know some people who understand.

susanf | @susanf | Mar 30, 2018

How do I ask a question on this site?

jmmb | @jmmb | Mar 30, 2018

In reply to @jmmb "Hi, I am wondering if anyone that has MALS also has body aches, and bad hip..." + (show)

Hi @jmmb, I have MALS and body aches and horrible hip pain. I also have chronic fatigue syndrome so I figure it's probably that. The pain is getting worse, and at times the hip pain is so bad it is difficult to walk or stand.

Kari Ulrich, Alumna Mentor | @kariulrich | Mar 30, 2018

In reply to @jmmb "Hi, I am wondering if anyone that has MALS also has body aches, and bad hip..." + (show)

Hi @jmmb I do not believe that MALS contributes to body aches and hip pain, however what I have found interesting is that many MALS patients also have FMD, EDS, POTS. I have noticed that on several online support groups. I know this was brought up to the vascular department at Cleveland Clinic but they did not believe there was a correlation. I do hope we see more research in the area of MALS in the future.

Kari Ulrich, Alumna Mentor | @kariulrich | Mar 30, 2018

In reply to @mandyjunebug "Hi. I don't have a diagnosis let along surgery. I am just beginning my search. There..." + (show)

@mandyjunebug WELCOME! I am so happy you found our community and I understand completely what you are going through. It sounds like you need a good vascular work up, especially since you have had an omental infarction. There are several diseases that can mimic mals, but no matter what the disease or diagnosis, we all here have the same symptoms and we are always here for you. Food aversion is difficult for people to understand unless they have been through it. I get fear going to the grocery store, when a friend calls me up to go for lunch it is instant anxiety. The holidays are brutal and family and friends have a hard time understanding. Food is so social so that adds to the adversion. I have had two Mals surgeries, I also have a vascular disease that can cause symptoms. I know it is difficult to be your own advocate, but their are physicians out there that are patient centered and want to hear your opinions and thoughts. It is your body, you know it better than anyone. Don't give up until you find a physician who is willing to work on your team. We need their expertise to guide our care, however they need our expertise so they can guide us properly. You have a complicated history, and with your experience you will probably know more than most providers about MALS. I recommend reading what you can from quality sources, such as Mayo Clinic, Cleveland Clinic also you can use google scholar to find updated, peer reviewed papers. Feel free to post articles here , ask questions. This is a small group right now, but it is growing slowly and we all have been in your shoes! Again welcome!

Kari Ulrich, Alumna Mentor | @kariulrich | Mar 30, 2018

In reply to @susanf "How do I ask a question on this site?" + (show)

Hi @susanf you posted properly, so ask away! Would love to know more about you. My name is Kari, I am a MALS patient. Have had two surgeries a celiac bypass and a revision. Several celiac blocks. I also have an underlying vascular disease and connective tissue disease. I will do the best I can to help answer any questions I have or try to refer you to someone who may be able to help! Welcome to the group!