Median Arcuate Ligament Syndrome (MALS)

Thanks so much. I feel the stent will help, however I’m just worried with the scar tissue being the possible issue. I’m going in on the 21 of April for a CT scan to see how everything is working. Also, they’re going to look at my iliac artery to see how bad it is an if it needs a stent also. Hence the May Thunder Syndrome. So I’m hopeful and worried at the same time. I have two beautiful grand babies that I want to be able to run around with lol. Again thanks to everyone on here, it helps for us who have been through a lot.

Here’s what my leg looked like after a week. It was swollen and blue.

@jayson - I had a stent placed 6 months after surgery to release the ligament. The artery had remained in the compressed shape. Before the stent placement, the surgeon explained that if the stent fails the next step would be open bypass.
6 years later the stent is still working. The deformed artery has put a little pressure on the stent, but it has remained functional.

There is a woman on the MALS Pals group on Facebook, Robin Schrader, who has had a similar experience of open surgery (2 actually) followed by the artery collapsing from years of compression. I believe she had stents done and then a bypass or is waiting for a bypass. I would think they need to figure out if you have re-compression from scar tissue before deciding what to do (hopefully CTA will show what's going on). If you have re-compression you'll probably need another surgery (just what happened to me) because a stent would likely fail. If the artery has failed but there is no compression then a stent is a great option and would avoid another surgery.

Unfortunately I know nothing about May Turner but it is discussed quite a bit on the MALS groups on Facebook.

Hello ALL. So had my appointment last week with my Vascular Surgeon (Jenny Cho). First off Dr. Cho was very professional and was understanding. She went over my symptoms and decided to do a CT Scan. She looked over my ULTRASOUND and believes that since my open release in 2019 that my Celiac Artery has possibly closed. Either by scar tissue, or by the inner part of the artery is damaged. Along with my initial issue I was also diagnosed with May Thunder Syndrome. So Dr Cho stated depending on the severity of the artery she thought a stent would be a good option, and possibly a bypass. My question I would ask. Has anyone had a stent or a bypass and if so which one would be better than the other. Also, does anyone have May Thunder Syndrome?

Thanks

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.

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

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.

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.

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!