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Median Arcuate Ligament Syndrome (MALS)
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, I just read in your post that you will be traveling to Mayo Clinic. I want to let you know that we have a discussion group "Visiting Mayo Clinic" where you can meet other members who have also traveled there. If this is your first trip to Mayo, I think you will find some information that can be helpful to you. You are always welcome to visit and to join any conversation there.
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I wish you a safe journey.
Rosemary
Hi Kari, I'm just catching up. My life is pretty quiet except just had a crazy week of crisis management for two random events that fell out of the sky. Now that those are dealt with, back to MALS!
I was focusing on ME/CFS because that has been my only diagnosis from Canada. But they also knew I had MALS and told me it was not treatable, that fixing it was only a cosmetic surgery and therefore not covered by public healthcare, that I look fine, that it's not a real illness, etc. I was left to manage my ME/CFS symptoms on my own since there is a 2 year wait to get into the Provinicial Chronic Illness Management Program in Vancouver.
I take digestive enzymes with most meals especially if there are vegetables, and lactase if there is dairy. I also have a protocol for gut repair with glutamine and probiotics after having a bout of bad bowel symptoms such as gas++ diarrhea pain. Potato chips are my fallback food when bowel symptoms are too extreme. After my appendectomy I had diarrhea for 10 months and saw dieticians and was very weak and malnourished. They had me mostly on a BRAT diet, then gradually added canned vegetables and now eat very small frequent meals that are nutritionally good.
Thanks Kari, it is a list for sure....embarrassing but unfortunately real like you say. There are so many symptoms that are overlapping of other things. we will see what happens at the cardiac electrophysiologist...... I am going to pm you if that is ok... oh and I saw Robin's article on Mals Pals...it was awesome!!! Thanks,Jill
@pluckyn welcome to the group!! Mals... well it is a significant surgery and one that is even more complex when you have multiple diagnosis. Trying to weed through what symptoms are causing what is difficult, and in the end I believe all diagnosis contribute to a patients overall well-being, The bowel problems with MALS can get better controlled after the surgery, for me it was over a year before these symptoms stabilized and that is with continued use of medications. May I ask how is your nutritional intake? It does not matter if you are losing weight if you are not getting the proper nutrition, My second surgery I was able to maintain a stable weight by eating m&m's .... A LOT... they were the only thing thing I could tolerate, however I was malnourished, weak and spent most days in bed due to fatigue. Mals contributes to a lot of symptoms but so does ME/CFS. Hard to get both under control, but it is possible.
@jmmb, this is an awesome list! Print this out.... because it has symptoms from multiple body systems it will be a lot to go through, but not impossible. Each area needs to be addressed. I had to giggle about not being able to wear a bra..... I remember telling my vascular surgeon that too... it causes to much pressure and it quite painful. Every symptom you have listed here I have had and they are real! This is a great list check things off as they address them.
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2 ReactionsWanted to share this article with all of you.... we are not alone in our struggle! This is my friend Robin who runs MALS PALS on facebook. I think you will find her story insightful. http://www.fredericksburg.com/features/after-years-of-searching-spotsylvania-woman-finds-answer-to-mystery/article_e60a6e36-c6c3-5653-9c85-ed33fa4b861f.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share Let me know what you think? Does it sound similar to what you have been through?
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1 ReactionHi 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....
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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3 ReactionsHi @plucky I am so sorry and welcome to the group discussion. You have a lot of similar symptoms as I do. I also have CFS. I wonder which is worse, MALS, or CFS or the combination, what do I focus on since no dr is helping.....you know. Well first off about MALS, I did not have the 'traditional' symptoms either. My surgeon said he would not have thought of that right off since I was not loosing weight or vomiting. Mine was caught by accident. I had severe pain and went to the er to hopefully get some pain meds. I assumed like I had been told, ulcer or IBS, you know. They insisted to do ct scan and good thing they came back and said do you know your arteries are narrowed???? So you don't have to have traditional symptoms. Mine was also different in that it was more complicated then they realized. When they went in the SMA was also involved and things were encased in things and so on.....It was a 7 hour surgery.
Had relief and again they started narrowing again. I never vomited, I actually gained weight, but that was due to tremendous horrible amount of stress with family. I could eat, but it hurt so much worse after eating and bloating. I was told for 3 years I had SIBO as well, had lab tests also that were positive, but was referred to Mayo for that, and they did a test here, different protocol then I believe should be and ever had done. SAid negative and dr said, just ibs and you've had pain so long, you are sensitive...., can't help you.Still dealing with that. A whole other issue, but my point is find a dr. that listens to you and wants to help you. Whoever says they wont treat you because of certain things, even though you clearly have MALS is ridiculous...LIke you, my debilitating symptoms are constipation, mental fog/sluggishness, constant gut pain, exhaustion and so on. Who knows what to separate from what, but anything to help should be done. MALS is not okay. Do you know if you have compression. That definitely needs to be addressed because of blood flow issues. I am so tired of certain drs. thinking they know everything. Plus every person is unique and should be treated that way. Good luck to you and if you have any questions don't hesitate to ask, don't know if I'll have any answers....Kari is wonderful she usually does......
Jill
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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