Median Arcuate Ligament Syndrome (MALS)

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 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.

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 @tlkc1

You mention blood pressure something which I think is very important to keep track of and talk to your physician about. I'm not sure if you are taking any pain medication, but what you take can have a marked effect on your blood pressure.

I was on high dose morphine for over 8 years with the pain specialist putting me on transdermal patches. In the last 2 years my blood pressure was bottoming out. I was suffering some severe cardiac symptoms with chest pains that sent me to A&E on several occasions. Last year my average blood pressure was 85/45, the lethargy was brutal and I found myself passing out after eating something as basic as breakfast cereal.

I decided last year to take myself off morphine and find other ways of managing the pain. The cardiac symptoms disappeared and my BP improved too. I still get low BP but I don't pass out quite as often. I have compression in more than one artery which my surgeon said he will try and repair.

If you are concerned talk about it with your MALs team and Dr Hsu. Just remember you are the patient you have a right to be heard.

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?

I am 3 years into this nightmare and finally may have found a diagnosis of Mals. I am awaiting a diagnostic celiac plexus block. I am really overwhelmed by all the different approaches to possible surgery and wondered if there is a list of drs that treat both the neurogenic AND vascular parts to mals? I also am very concerned that I have other compressions and am hoping to find resources of who to see for evaluation of possible May-Thurner, SMA and pelvic congestion. I feel like it makes sense to get the whole picture before going in for Mals surgery. Thanks for responding!

Hi, I was diagnosed with Mals in Sept. 2019 after 16 years of pain, hundreds of tests and suffering. After my pain doctor told me that I needed to pursue finding a diagnosis bc he could no longer help me, I did my own research and it led me to MALS Awareness group on Facebook. They are a wealth of information and support. I probably would not be her without their encouragement and educating me. I had Mals surgery a year ago, and knew immediately that the sharp, piercing pain in my epigastric area was gone. It’s really important to make sure you have a ct scan, duplex ultrasound and be checked for gallbladder, Elder Dahnlos, Smas, Nutcracker and pots. These are very common issues to have alongside of MALS. The MALS surgery only releases the ligament. I had open surgery with Dr. Hsu in Stamford, Connecticut as he was the surgeon who had the most experience and education at the time. Now, thank God there are several other doctors who are doing the surgery. I flew from Arizona to Connecticut and would do it over again! Best wishes!