Median Arcuate Ligament Syndrome (MALS)

Hi Mark,
Mine is a weird story. Nothing about my medical conditions is 'normal' or fit the profile. I just went to the er one night for pain meds cause it was really bad. They did ct scan and told me my arteries are narrowed and to see a vascular surgeon. I saw the chief of vascular surgery at a university hospital. I was lucky. I had no idea what to expect, didn't think a big deal. I was a special ed teacher and thought I would be back in a month. That was almost 5 years ago. It was about an 8 hour open surgery. ICU for 3 days then reg room. I was totally drugged up, don't remember much. The surgeon wrote and published a journal article on me since I was so rare. The diaphragm was not only crushing the celiac but also the SMA, which is extremely. It was a lot of work in there. My pain was gone but a very long difficult recovery. Then major stresses. My dad suddenly passed away and I was POA. I had 2 sisters who were extremely pissed and started 3 years of pure hell for me. My mom had beginning Alzheimer's and I was the one that would care for her when my dad passed, of course thinking that would be way down the road. She was all upset with my sisters, it was just terrible.
So the reason I say this is the stress during this basically killed my body. During this time, not even a year after first surgery my arteries narrowed again. I should have had a by pass but way to weak. Surgeon said I would never make it. So I got stents put in each artery. That held for awhile then, balloon. My original surgeon moved to another state. My second surgeon was good. I didn't know about the nerves and all that because I never researched or anything because I was taking care of my mother and dealing with them. I learned things on these sites. My mom passed and my sisters were taking me to court, basically my lawyer said to go because I had all evidence and I would win, but my body just couldn't take it so we settled in mediation and signed contract to communication. So sad. My dad said they would give me trouble, he was right. Anyway, The reason I tell you this is because I just got diagnosed with dysautonomia, POTS and MCAS. This is all from what my sisters did to me. I would have been able to go back to work and probably had the bypass so my condition is not from the MALS.
My surgeon now is from Mayo and he is awesome, but not to familiar with MALS. I may need to get back in contact with my original surgeon. He is chief of staff at Baylor College of medicine, but I know he will remember me.....haha
Well that is sort of my story summed up. Sorry this is so long. I never thought about the flying. I do have reports with dilation, and we were going to do celiac block, but all the dysautonomia stuff took over.
Well good luck to you,
Jill

Hi Shawnee, I live in Dallas. I just had robotic lapriscopic surgery on Wednesday. I am just starting third day post op so I can’t say yet how I feel cause I have all the pain from the surgery. My surgeon is older so he has done this before. He was very confident in what needed to be done. He told my family when came out that it was very successful. Another vascular surgeon was ready to assist but was not needed. They were ready to convert to open if needed but didn’t him after al. I will update as I progress. I believe I can tell that I am able to eat more and don’t have that after eating pain but as I said, I’m holding cmmenting too much till I am out of this surgical pain.

Also wanted to post this article if possible. The Cleveland Clinic has reached out to other hospitals to share their knowledge on vascular issues for people that cannot travel to the clinic. https://consultqd.clevelandclinic.org/cleveland-clinic-teams-with-three-baylor-hospitals-to-provide-heart-care/. I consulted with three docs before deciding. Two vascular and one general surgeon.

Congratulations on a successful surgery and thank you so much for replying. Do you mind sharing what doctor you have seen in Dallas? I hope all goes well and look forward to hearing back from you on your progress.

Sure. His name is dr Gary Kimble Jett. He is at Baylor heart hospital in Plano. I consulted with a general surgeon who was my second choice. I also sent my test to Dr. west in Fort Worth. I found his name on the MALS pals page on Facebook. He used to be in Houston and several on Facebook recommended him, however, when I sent him my test results, I received a call from his office saying that he would not take my case. Dr. Dennis gable was the surgeon assisting on my surgery. He Actually saw me in the hospital when I was first diagnosed. When i started getting worse again and was considering the surgery, he will referred me to Dr. Jett for the surgery. I decided to go with dr Jett because Of his credentials and at my first appointment he knew exactly what I was talking about and had no hesitation telling me what procedure he would do. Dr gable and Jett are both vascular surgeons. I am from Houston originally and a friend there recommended Dr. Charlton-Ouw. You might consider a second opinion with him. I’ll keep you posted.

@annief thank you so much for this information. For my initial surgery in 2014 I had the chief of vascular surgery at UMC Medical center in Tucson, AZ. He was great. Unfortunately for me, he moved to Texas and became chief of vascular surgery at Baylor. I was going to follow up with him once I get my next scans. in 2015 I had stents put in, and 2017 balloon. My celiac is narrowing again. My surgeon at Mayo is awesome, but doesn't have MALS experience. I was also looking at Cleveland Clinic...this is great. Now I wonder if I can get in....he should remember me though, he published a journal article about me because my case was so rare!

I had MALs lap surgery at Mayo 1 year ago. I’m doing great now. About 15 signs/symptoms disappeared after surgery. Lap surgery was tougher than expected. Much more difficult than my C-sections. 2 months of nausea, 8-10 months of fatigue. But very well worth it.

This is good to know. Everyone Immediately wants to know how I feel, if I can eat like normal and if all the problems are gone that I had before the surgery. It’s just hard to explain this to people that don’t have it and that it may take months for every symptom is gone.

Full recovery is much better for those who had ligament release AND celiac nerve plexus/ganglion removal vs those who only had ligament release.
My celiac nerve ganglia was partially removed and I’m doing well: pain is gone, no nausea, no early fullness, blood pressure stabilized, brain fog gone, abdominal and upper body swelling is gone, no more constant burping, can sleep well again, no more pounding and racing heart, no more “spraying” feeling under ribs, no more intense sweating and heat, no more arterial spasms (had 3 and those were excruciating), no more difficulty breathing due to hard diaphram, can exercise again, can take deep breaths and hold and swim under water long distance again.
So grateful!
Hope you do well. I would not trade the difficult time for anything because the gratitude found later is one of the greatest gifts one can have.

That’s fantastic your surgery was successful. I’m going to see Dr. West in Fort Worth for a second opinion. What is your doctor’s name?