Median Arcuate Ligament Syndrome (MALS)

Hi Kari, Thanks for that info on the book. I will look into that. I definitely believe it is not from a single source. There is no way. It seems like that should be common sense. These arteries are connected and bringing blood supply to our major organs in the stomach.....hello I think if the blood supply was limited after awhile there has to be some kind of damage....hence pain or something....but what do I know....haha.. Well I am glad to here you are feeling better. Maybe I can get the Eucalyptus tablets and book at the same time and not pay for shipping........anywhere I can get a deal.....be well and keep in touch. You always make me feel better once I talk to you. Thanks for that.

Hi @kariulrich, I haven't connected with you in a while, but I have kept up on most of the posts. Just wanted to check in on you and see how you are feeling. I've been praying for you and Jill, as it seems things are very difficult for you both right now. You've both been on my heart.
I remember when I first posted with you, that I shared my concern that it seems that most people don't get relief from this MALS, but you encouraged me by giving me advice with eating and that those that get better don't necessarily stay on the connect since they are "better". Anyway, I just wanted to thank you and seek your opinion on something. I was reading a couple of your past posts, that you are doing a paper for your nursing school about MALS. I also bought that book that was recommended on MALS Pals facebook page. (Sadly, I feel like I am reading a foreign language, haha, it's so far above my head!!) The book mentions that the artery compression with the ligament occurs at or around the 12T vertebra. Well, I have been seeing a pain management doc since I have residual pain after my lap surgery on Nov 9, 2017. The pain is actually the very first symptoms that I had a couple years ago, sharp, burning or pinching under my lower right rib that radiates through my back. This pain management doc has been performing "trigger point" injections into all the sore or tender areas deep in my abdomen, on the mid/right side. It seems to be calming things down. Also, when he put pressure on my back, he said he found a very tender spot on my 12t vertebra. I will be having a cortisone injection into that area this coming Monday. So, my question is this: Is there a connection with the ligament compression and our spines? I find it very ironic that the locations are the same. I am asking because I have been pretty surprised that these trigger point injections seem to be helping, and if this cortisone injection helps finish off the pain, maybe this can help other people as well. I had to be convinced by this doc to even allow him to do these procedures as he has never dealt with a MALS patient, but he is very cutting edge. I didn't think he understood what I was going through and also, that my pain felt like it was deeper inside my abdomen. I was truly skeptical.
I hope this makes sense. I would love your feedback and I hope that maybe this info can help others.
God bless

Hi @blessedgma that is so nice of you to mention me and that you were thinking of me. I haven't been on in awhile. I actually have been on MALS pals and mals awareness quite a bit. It is just MALS related and has been very helpful. They have talked about back pain. Someone had mentioned their daughter had 3 bulging discs after her mals surgery. I think there was something else mentioned as well, so when I was reading what you were writing, I thought there may be a connection. I am no doctor, this is just from what some other patients had said. I also have back issues. I had some before, but honestly my back is so much worse after surgery. It was noted in my post op report a disc bulge at L5-S1. I was assuming that is what I had before. My left side under my ribs feels like a large slab of wood or brick or something is there. I can't bend sideways and I feel it constantly. I assume that is all scar tissue. Also if you google an image of ganglion nerves, you can see how they are around celiac and sma arteries, but they look like they do go back to the spine. I have also read that some drs believe that these nerves need to be removed all the way back to the spine because they can be the cause of pain. This is just things I have heard and read. I do believe about the nerves though. I have read many published medical articles about the ganglion nerves needing to be removed as well.
I don't know if that helps any, or makes it more confusing...I know everyday I think I just get more confused and frustrated. I just need to find a really good dr. that has treated MALS and understands it.
Hope you are doing well, well as good as can be living with MALS....
Jill

Thank you so much for your reply. It really does make sense about how it is all connected. I agree about feeling like the more I read, the more frustrating this is. It's nice that we aren't alone, isn't it? I think my frustration comes from seeing how many people are still suffering, (like you and Kari). Everyone has so many of the same symptoms, yet, also very different ones as well. I guess it's true that we are all as different as our thumb prints. Know I am thinking of you and Kari and praying for you to have a season of feeling well!!

@blessedgma you are so sweet. Please keep in touch on how you are doing, and I will let you know if any new developments happen. Hopefully there should be some. I requested Mayo give me another GI dr. I would be more comfortable with and who understands my diagnoses more. She has been recommended as well. I explained my situation so hopefully I will here soon. I am suppose to be seen by a cardiologist as well. I need an cardio electrophysiologist and they didn't give me that so hopefully that will get taken care of. I am suppose to get a response in 1 -3 business days and today is day 3????keep your fingers crossed. I really don't want to get the rug pulled out from under me again. That is how I felt after my initial visit with my GI. I should have complained then, but didn't want to make trouble. Oh well. Take care of yourself. and Kari you as well. Oh and I did do the DNA/gene testing for the pharmaceuticals and I got the results and have no idea what they mean, but I am reviewing them with my dr. in 2 weeks.....
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

Hi @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

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.

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....

Wanted 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?