Median Arcuate Ligament Syndrome (MALS)

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Hello, I was diagnosed about a month ago in the ER. I had been having pain in my abdomen for several days and a CT scan showed occlusion of the celiac and Mesenteric arteries. I have been to a vascular surgeon locally and also one at Northwestern Memorial in Chicago, Illinois. Neither of them want to do surgery until I start losing a lot of weight, severe nausea, etc. It's mind boggling and I don't know anyone who has dealt with this. It is called chronic Mesenteric aschemia.

Hi, @grandmajo -- I merged your post with this one, as I think your best connections are here, like @kariulrich, @susanf and @jmmb. Hoping they can share what they know about mesenteric ischemia and whether they may have had surgery or stents or may have known others who did. I also trust they might be able to help you with the further information you are seeking.

How have you been feeling?

I have been searching for information, or anyone, who has experienced chronic Mesenteric ischemia. Dod you have surgery or stents? The that I have seen wants to eait 6 months to see if I lose more weight, or start having worse pain and nausea. Somehow I don't think waiting until I am in such bad shape to do something about it is going to work for me. I am not comfortable with this.
I can find no support groups for this diagnosis, and although it is a rare condition, there must be someone that has maybe a similar experience.

Welcome @grandmajo,

I'm so glad you've joined the Connect community. I'd like to introduce you to @susanf and @jmmb as they've both written about mesenteric ischemia, and also to Mentor @kariulrich who may have more insights to share.

I encourage you to read this information about the chronic mesenteric ischemia; both links are from current resources, and I hope they will give you some more information:
– https://www.uptodate.com/contents/chronic-mesenteric-ischemia
– http://www.acc.org/latest-in-cardiology/articles/2016/12/20/07/12/role-of-endovascular-therapies-in-chronic-mesenteric-ischemia

Another incredibly informative resource is this discussion on Connect:
– https://connect.mayoclinic.org/discussion/we-need-awarenesspreventionresearching-on-very-rare-condition-smas-superior-mesenteric-artery-syndro/

@grandmajo, when were you diagnosed with mesenteric ischemia? Mesenteric ischemia can be either chronic or acute; have you been told what type of ischemia you have?

Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of MALS? This Mid-back pain is excruciating and I find it hard to believe that it's from the MALS.

Ok gang. I had my lap surgery almost 2 weeks ago. I go in for my post op cheek tomorrow. Questions I have...does this cramping ever go away? I was without food for so long (30 lb weight loss) I find myself binging. Does that go away? I have not gained any weight even though I am eating in fact I have lost a pound. I believe that the surgery was successful. The surgeon commented on the right ligament as well as the bundle of nerves. He also took care of a sliding hiatal hernia at the same time.
However, yester when trying to eat breakfast and lunch I choked. Literally. I feel that same tingle in my body when it is receiving food. Not pain per se but the tingle where the pain used to be. Is it a matter of time before it all returns?
Am I just not being patient? I ask because my surgeon although he was good, is not an expert on MALS . He just performs the surgery in our area. I am seeing his assistant tomorrow as he is out of the country. I want to know what to ask and what is normal. You have all been through this before, some of you more than once.
Thank you for any advice.
Susan

So glad I found this group. I have a lot of the same symptoms as a lot of you and have seen two vascular surgeons. No surgery now, they are waiting for me to get worse. I have Mesenteric ischemia and cannot find a group for it. I feel like a ticking time bomb. Do you wait until it becomes an emergency or find someone who will do surgery now in order to insure I don't lose part of my intestines?

Thank you Kari for your informative response.

Medical Marijuana is legal in New Mexico. You have to pass a medical review and get a registration card. That said I have been using a very low dose of Indica sublingually. The Indica hybrid of marijuana has a very small amount of THC, the substance that makes you high. I take an eyedropper-full at night if I'm having trouble sleeping. It basically makes you feel sleepy. It has not helped me with pain. And I don't feel any side effects.
I think I'll investigate sublingual Nitro. Nitroglycerin I assume.
And I'm definitely looking into trying a celiac nerve block.

Thanks so much.
Lou

@ruudolpho I agree, we do have a caring MALS community, and I also am grateful for the presence of everyone. It is a little less lonely be able to lean upon each other. So to answer your questions, you and I have similar surgeries. You are not quite at the 1 year mark, and for me the recovery was LONG, at least a year before my pain and stomach cramping issues went away. They gradually did improve, but it was a long slow recovery. There was a time about the 1 1/2 year mark where I could go out for meals and eat a regular full meal. The pain did improve, but the stomach issues... cramping, bloating, diarrhea/constipation has never resolved 100 percent... it has improved... but I still to this day have problems. I would hope your pain at this point would not be "great" so that makes me a bit concerned. You also have lost a significant amount of weight prior to the surgery if I remember correctly. Malnutrition is a BIG part of the exhaustion in my opinion, and that takes a long time to get back to baseline. With all of that said, Yes I did receive a celiac block after my surgery and it was immediately helpful, no pain, I could eat! (It was short lived for me, lasting only a week or so). From my understanding some people get relief for years from a block. Sometimes it requires several blocks. For me the bloating continues, gummy fiber helps. Have you had a full iron panel done? Many of us have iron deficiency anemia and that is another problem that is hard to resolve when it is difficult to take in food. I am on Tramadol, as my pain has returned. I have been on it before, and it is the only pain med that has helped. If I take it before meals the pain is considerably less and I am able to eat better- both amounts and quality of food. I will say, when the pain is significant I go into food jags, and usually it is chocolate that I eat... I can pop a few dove chocolates in my mouth and that will help, I would do that every few hours. However we can't live on chocolate can we? With the tramadol I am able to tolerate protein, fruits and veggies. Another med that was a rescue med for me was sublingual Nitro. I could not tolerate the headaches from the nitro when I used the slow acting or patches. When the pain was incredibly bad after a meal I could take the Nitro and find relief within about 5-10 minutes. I am have been on cymbalta now at 30 mg, but have not tolerated the side effects of 60 mg. It has not helped with the pain, but there is hope that it will at 60mg. I plan on trying to increase the dose again, but I want to do it when I have some time off. I finally got brave and asked my physician about medical marijuana, however she did not know enough about it to give advice either way, so that is on the back burner for now. Tramadol works awesome for me, but it is something that is addictive so doctors are very reluctant to prescribe it, additionally they are hesitant to use it long term. I honestly do not know what will happen if I was told to go off it, I do know my quality of life would go back to being in bed most days. I do want to find an alternative to being on Tramadol, but there is not much out there. I have tried acupuncture, meditation, walking, even started horseback riding lessons to give my mind something else to think of. I think trying a celiac block is worth it. I also think being in the pain you are in warrants further investigation, make sure that stenosis has not reoccured.