Median Arcuate Ligament Syndrome (MALS)

Thanks so much for your reply! I am so sorry you went through this pain for 16 years! I can’t imagine. I have had a consult w dr Hsu and he has ordered the block. I am concerned about getting checked for the conditions you mentioned, I don’t have a super helpful pcp or gastro, they all think I’m nuts. Can you tell me what type of dr manages Ed and other compressions?

How are you feeling now, was the recovery as bad as I’ve read? It seems like a lot of people end up worse afterwards, especially if they have other compressions unaddressed. My other concern is that I have had consistently low blood pressure through this whole time, but no one seems to worry about it even though I’m extremely short of breath and feel faint most of the time. My velocities were low 100s and doubled to over 200 on expiration but from what I understand dr Hsu does not address the blood flow at all. Do people usually have both nerve and blood flow involvement and the ones that do have both do they both need to be surgically addressed?

Hi Everyone,
I thought I would jump on here because I found the Facebook group overwhelming. I had surgery for MALS in 2015 (after the usual endless series of "normal" tests) in Seattle and had a couple of good years. And then I started having these random episodes where I'd wake up in the morning with the same pain in the same spot and some increasing nausea. Sometimes I'd even dry heave before it would finally calm down and start to get better. This had become more frequent and frustrating to deal with, probably every 3 days I'd have pain. Fortunately it's not anywhere near as severe as the attacks I would have in 2015 that sent me to the ER 3 times.

Anyway, last Dec I finally decided to seek help. My primary care doc really had no idea what to do with me and the GI specialist she referred me to gave the usual "try taking prilosec for 2 weeks and have a follow up" line, so I did a Google search and found Dr. Mallory Meyer in Denver who actually put MALS down as an area of specialization. Imagine that!

I've now had 2 tests done and the doppler ultrasound came back with the same result as 5 years ago: "Markedly elevated peak systolic velocities in the celiac trunk which worsens during end-expiration" including some signs of stenosis to the superior mesenteric artery (concerning). Then I had a CTA here in my hometown, which came back as normal, but I don't think they did it right as every time they asked me to breathe in deeply. I'm awaiting Dr. Meyer to review these results and get back to me.

In the meantime, I am wondering what experiences folks have had with a second round of surgery? I am suspecting they will make me do yet another test to confirm the results, but it seems pretty clear to me that the first surgery failed somehow. Hopefully Dr. Meyer, being personally interested in MALS, will be much more thorough and have a long-term solution for me so I can get on with my life without pain.

Hi Everyone,
I thought I would jump on here because I found the Facebook group overwhelming. I had surgery for MALS in 2015 (after the usual endless series of "normal" tests) in Seattle and had a couple of good years. And then I started having these random episodes where I'd wake up in the morning with the same pain in the same spot and some increasing nausea. Sometimes I'd even dry heave before it would finally calm down and start to get better. This had become more frequent and frustrating to deal with, probably every 3 days I'd have pain. Fortunately it's not anywhere near as severe as the attacks I would have in 2015 that sent me to the ER 3 times.

Anyway, last Dec I finally decided to seek help. My primary care doc really had no idea what to do with me and the GI specialist she referred me to gave the usual "try taking prilosec for 2 weeks and have a follow up" line, so I did a Google search and found Dr. Mallory Meyer in Denver who actually put MALS down as an area of specialization. Imagine that!

I've now had 2 tests done and the doppler ultrasound came back with the same result as 5 years ago: "Markedly elevated peak systolic velocities in the celiac trunk which worsens during end-expiration" including some signs of stenosis to the superior mesenteric artery (concerning). Then I had a CTA here in my hometown, which came back as normal, but I don't think they did it right as every time they asked me to breathe in deeply. I'm awaiting Dr. Meyer to review these results and get back to me.

In the meantime, I am wondering what experiences folks have had with a second round of surgery? I am suspecting they will make me do yet another test to confirm the results, but it seems pretty clear to me that the first surgery failed somehow. Hopefully Dr. Meyer, being personally interested in MALS, will be much more thorough and have a long-term solution for me so I can get on with my life without pain.

Oh no-who did your first surgery? Was it open or lap? I’m so sorry. I had open surgery a year ago and am still having problems. Keep searching for answers. What tests are they doing?

Hi @jhmontrose

I haven't had my operation yet, but I can empathise with the pain; especially the pain on breathing. Do you think the median arcuate ligament was not cut back enough on the first operation?

Oh no-who did your first surgery? Was it open or lap? I’m so sorry. I had open surgery a year ago and am still having problems. Keep searching for answers. What tests are they doing?

Ugh! So sorry for you situation. Many of us have felt your frustration. The good news is you have a diagnosis. I live in the Dallas area and really had hoped to find a doctor closer than the Cleveland clinic and or the Mayo Clinic (although I would have been open to it if I had no other option). Once I got the diagnosis the search was on for a doctor. It took 3-4 months between diagnosis and surgery. There is a doc in Fort Worth with a lot of experience with MALS. I contacted his office. They told me to fax all my records and then called to tell me he would not take my case. No explanation.

That was very disappointing. After the diagnosis I tried waiting to see if I could live with it. So to be turned down after deciding to move forward made me question everything again. My GP recommended one of the best vascular surgeons she knew. When I saw him he said I know who you need. With no hesitation he recommended another vascular surgeon who would do it robotically. I met with him and had the surgery.

Al that to say, be encouraged. From the stories I have read on here, it is not a quick process. I know that feeling of just wanting to rid yourself of the constant pain and get back to normal. Hang in there. You will make it. The counseling is good. You need to take care of yourself in other ways. Counseling, foot massages, whatever makes you feel good because the constant pain and awareness of your condition can suck the life out if you. Not to mention people like your family And friends who just don’t get it.

Keep hanging on!

I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers