Median Arcuate Ligament Syndrome (MALS)

Hi Shawnee
Welcome to Mayo. From my research the procedure your Dr recommended has worked for many in the past. Is the doctor doing the surgery a vascular surgeon? May I ask if you have got to the stage of not eating yet. If you are lucky and they caught the compression early having the surgery may be beneficial. I feel the longer the condition goes un-diagnosed the worse the symptoms get. in many of the posts you will find they can not eat as the pain gets worse leading to them losing weight rapidly. I have my surgery consultation in 2 weeks, here are the questions I will be asking that may be relevant for you too:
1) What part of the celiac trunk has been compressed?
2) What is the mean systolic velocity of the celiac artery?
3) Have you as a surgeon dealt with celiac compression before.
4) If so what is your success rate? (how many patients are pain free?)
5) Will it be necessary to have an angioplasty or stent in the artery?

I am hoping your compression is minor and you don't need the angioplasty or stenting. If the answers to the questions are satisfactory then I wouldn't leave it too long to make your decision. The longer you leave it the worse you will get. I wish you all the best, please keep us informed.

Mark

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.

Hi Shawnee
Welcome to Mayo. From my research the procedure your Dr recommended has worked for many in the past. Is the doctor doing the surgery a vascular surgeon? May I ask if you have got to the stage of not eating yet. If you are lucky and they caught the compression early having the surgery may be beneficial. I feel the longer the condition goes un-diagnosed the worse the symptoms get. in many of the posts you will find they can not eat as the pain gets worse leading to them losing weight rapidly. I have my surgery consultation in 2 weeks, here are the questions I will be asking that may be relevant for you too:
1) What part of the celiac trunk has been compressed?
2) What is the mean systolic velocity of the celiac artery?
3) Have you as a surgeon dealt with celiac compression before.
4) If so what is your success rate? (how many patients are pain free?)
5) Will it be necessary to have an angioplasty or stent in the artery?

I am hoping your compression is minor and you don't need the angioplasty or stenting. If the answers to the questions are satisfactory then I wouldn't leave it too long to make your decision. The longer you leave it the worse you will get. I wish you all the best, please keep us informed.

Mark

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.

Did your surgeon address the celiac nerve as well as ligament release?

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.

@sclindajanssen, this is so encouraging and I will be referring back to this as I do other posts. Others have said the recovery is long and I kind of understand it now. My gallbladder removal was lapriscopic too but this is much more involved. My doctor did addressed the nerves. I am optimistic but can see I will have to be patient.

Glad it’s hellful. One more important thing for recovery: avoid sitting at all costs and lay down frequently, even if only 10 minutes here and there. Sitting causes more compression on surgical site. I got an elevating work station at 3 months post surgery and that’s when the pain really started to subside and the healing speeded up. 1 year now and I still stand at work rather than sit. I probably always will because they can’t surgically raise the diaphragm :).

Do you recall if you took everything for the nausea? I was so week and light headed today, my sister took me to the ER. They said I was dehydrated and gave me two bags of fluids. They told me to eat and drink more. Lol. Guess I’ll call my doc tomorrow and see if I can get anything. Don’t really feel like eating and drinking when you are nauseated.

@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!