Median Arcuate Ligament Syndrome (MALS)

@etr - You do have a diagnosis of MALS. What now? Consultation with vascular surgeon and possible GI surgeon too. Do you have a major medical center near you? University best.

Thank you for the replies! I am scheduled for a colonoscopy and upper endoscopy tomorrow. Is there anything they can look for during these two procedures that might indicate MALS? Otherwise, it sounds like the CT scan (taken on a exhale) is key.

@lme - To my knowledge, endoscopy and colonoscopy would not show anything that confirms MALS.

I had a consultation at Stanford in Palo Alto California with a vascular surgeon that was not a MALS specialist. She said that the MALS was not causing my symptoms. This was about three years ago. This is when I was trying to figure out if I should have my gallbladder removed. I did end up having my gallbladder removed because she said it would help my symptoms… Unfortunately, nothing has improved… Actually only gotten worse. I did have a phone consultation with Dr.Hsu at Stamford after my gallbladder surgery and he said that my symptoms sounded like MALS and he would be happy to meet with me as he suggested symptoms will get progressively worse.

@etr - Great that you will be able to see Dr Hsu. I’m sure it won’t be long then before you’ll have the surgery and relief.
Sorry you lost your gallbladder in the process.
Please post after seeing Dr Hsu! Very exciting.

Just so you know, MALS doesn’t get better on it’s own or by trying different diets, etc. I tried for 16 years before I was totally bedridden and in excruciating pain 24/7. If you have a diagnosis, it’s better to take care of ASAP, as recovery is strenuous especially if you’ve had it causing problems for a while. Dr. Hsu has done over 500 MALS surgeries. But know also, MALS surgery only takes care of MALS pain, which is amazing!

Hi, I've recently had an MR venograghy done at Mayo in Phoenix. I suffer from several vascular compression syndromes. I had surgery for Nutcracker and SMAS 2 years ago with Dr. Davila . I had a robotic assist lap Left renal vein transposition. I was patient 4 to have it done. I did ok,
symptoms were greatly diminished. I also had Tarlov cysts surgery 9/2020. I have lots of issues (comorbitities due to Ehlers-Danlos)
In October/NovemberI started having some of the symptoms come back.
Pain up under ribs, left side, wrapping around into my back. Sternum pain, short of breath, extreme fatigue, peopleain after eating, loud, painful belching. Nausea. It was intermittent and then has become very frequent.
I notified Dr Davila. He thought perhaps the renal vein had restenosed. He ordered the MR venograghy. I had that done 3/8.
It came back that yes, the renal vein has restenosed and also compression at the celiac plexus.
He had referred me to pain mgmt and ordered the celiac plexus block.
My concern is that Mayo doesn't seem to treat many with MALS.
It took over 40+ years to be diagnosed with Pelvic congestion, Nutcracker, May Thurner, Ehlers-Danlos, mild Chiari Malformation and Tarlov cysts. It was 2+ for Mayo to diagnose me as well.
It was a relief to finally have answers but finding treatment isn't easy. The GI at Mayo told me I didn't have the anatomy for SMAS. After my scan they called to tell me , yes in fact I did have SMAS. I have had all the GI tests more than once.
I live in Az and would be grateful for any insight or suggestions.

I thought I would update here. I ended up having open surgery with Dr. Mallory Meyer in Denver on 3/22. The surgery went well. I haven't had any nausea or stabbing MALS pain since the surgery, although admittedly it's only been a few days. Most of my pain is right along the incision, and of course the horrible gas pain in my shoulder and sides that took until yesterday to calm down. Honestly the gas pain was worse than the incision pain. My biggest problem was the combo of anesthesia and oxycodone which shut my bladder and bowels down completely, so I had to quit oxycodone and get by with gabapentin, tylenol and a heating pad to get over that. Time will tell, but I think Dr. Meyer is someone worth considering for MALS surgery if you think the Dr. Hsu approach is best (she has studied his approach and is very interested in treating MALS). She believes that nerve involvement is a big part of the symptoms but also cuts back the MAL 4 cm and trims it. Apparently I had a huge mass of inflamed nerve tissue around my celiac artery, which she removed. Of course she is a young surgeon so it was a bit of a risk, but I wasn't willing to wait 4-6 months with my symptoms getting worse and worse.

So happy for you. I hope each day gets better and better. Thank you for sharing your experience. Happy healing.

I.-I’m so glad to hear that you had surgery for mals. It’s the right step forward and good to have another surgeon that does surgery the same method as Dr. Hsu. Take it easy and be patient-it takes a while for those nerves to realize they’re not being agitated and your brain too.