Median Arcuate Ligament Syndrome (MALS)

@dylanmals I applied for social security disability a few years ago, it was a long process and I was denied. I did have a very good lawyer, and proper documentation from both my team of physicians and researchers. Unfortunately I had a judge who rarely approves SSD cases. My advice is to get a disability lawyer that you are willing to work with, it is a time commitment and exhausting. There are several MALS patients that have been approved.

@kariulrich thanks again. Hope your are feeling ok. Didn't see any posts from you for awhile so hope all is well. I have been on MAls awareness community. I think it is with Mals pals. I don't know facebook, but that is all the stuff/people info that keeps coming up. What is your friend Robin's last name so I can chat with her if you don't mind me asking?
Everyone on there has just raved about Dr. Hsu. What I find interesting is he believes you need to cut the ganglion nerves out all the way to the spine. I think that is what is causing so much of my pain. People on the site have said they have good blood flow, but pain and it is because the nerves. One girl had diaphragm resting on artery.
I am going to copy some parts of the post op report from my first surgery. I had no idea how intense and major the surgery was, so naïve. Thought I was going back to work in 1 month....still not working. Anyway I really don't think he removed the ganglion nerves. Let me know your opinion if you don't mind. It is kind of long. Sorry.....
Here it is:
Post op diagnosis: extensive diaphragmatic compression of the celiac and superior mesenteric arteries and focal fibrotic stenosis mixed with atherosclerotic plaque just beyond SMA
Procedure: Dissection and freeing of celiac artery compression from left crus of the diaphragm and patch angioplasty of SMA with limited endarterectomy through a thoracoretroperitoneal approach.
Findings: (I am just putting a few that might suggest some info) The aorta was freed from the diaphragmatic level down to below inferior mesenteric artery.....extensive involvement of the celiac artery in this diaphragmatic compression that celiac took a long downward turn, was encased in fibrotic muscle and elongated by the process . We actually divided most of the crus of the left diaphragm and extensively mobilized the celiac vessel and compressed part opened. .....mobilized first 4-5 cm of SMA , taking off diaphragmatic attachments and there was a small amount of platelet debris and plaque for which limited endarterectomy was performed and a bovine patch was then sewn in place. (BOVINE patch??? animal skin??)
There were extensive adhesions and almost a wrapping around of the left crus of the diaphragm around the celiac artery. It deflected inferiorly for quite a long distance. The crus was divided into 3 sections and resected and artery was free of all these diaphragmatic attachments. (ganglion nerves???)
The paper he published on me in the ANNALS of VASCULAR SURGERY had actual pictures during surgery, along with ct scans. It was summed up this way for that paper:
Extensive adhesions of fibers of the left crus of the diaphragm were found encasing both the celiac artery and SMA. These were meticulously freed and celiac artery visibly expanded. ****Despite careful resection of densely adherent diaphragmatic fibers and concomitant release of the ganglion, the SMA remained focally narrow.*******
RELEASE of ganglion to me isn't removal. This is only mention in all papers I have.
I am so sorry it is so long. There is a lot more, but don't want to bore you. If from your nursing side you want to read it I can tell you the site.
So what do you think, or do you think anything else??
Thanks
Anyone else out there that has a comment please feel free to let me know. Thanks

@jmmb Yes, I am familiar with MALS pals! My friend Robin helps run that group. It is a very active group and is of great help to patients. I am on there occasionally, they are very good about responding. Robin and I have been through MALS together over the years, I respect Robin's advice.

Does anyone here have any experience applying to social security disability with the MALS diagnosis?

Welcome @mrsno to the family! I am sorry to hear about your symptoms and weight loss... you must be exhausted! What kind of doctor will you be seeing? Vascular? Surgeon? I would think they may want to do additional testing on you, so I would ask what that would be? Cath angiogram? If they do this testing can they test pressures in the arteries? Maybe use IVUS? Let us know how your appointment goes.

@jmmb would love to read the case study your surgeon wrote! I have heard of Dr. Hsu, do not know enough about him to give an opinion. I will say that I have heard both positive and negatives. I recommend that patients feel completely comfortable with their surgeon, find out any statistics they can. It is such a big surgery, and sometimes we forget to do all the research, we just want a quick cure or answer especially when we are in pain.

I may have MALS. Just had testing for vein insufficiency in my legs and Pelvic congestion syndrome. I have suffered for years and have had GI type symptoms, pelvic pain with leg pain most of my life. 6 episodes of severe pain w eating for 6 days over 8 mo period w 40lb weight loss and now a lot of nausea and upper right quadrant pain, everyday. Will be meeting with my doctor Friday to see what compressions I may be facing. Any questions I should ask?

@kariulrich I just wanted to let you know I read the published article my original surgeon wrote about me. It was very interesting and reassured me that I do have MALS so I'm not crazy. First he said that mals is/can be a cause of chronic mesenteric ischemia. He said I had chronic mesenteric ischemia due to compression of both the celiac and sma arteries. He also said that mals is a rare and unusual disease, and 2 vessel is even a rarer variant. (speaking of me) He did mention the ganglion, but it sounds like it wasn't removed. He said 'release of the celiac ganglion'. What I did find interesting, I don't know what it would mean though is he said, "It is unclear why peak systolic velocities didn't normalize completely given resolution of patients symptoms and normal appearance of Celiac and SMA. " So it seems 4 years ago even after surgery something wasn't quite right. I did have significant narrowing at 6 months post op. My original surgeon is a professor and chief of vascular surgery at Baylor College now. I sent him an email today asking if he could help me. He should remember me since it was an unusual rare case and he wrote a paper. I would think he would be interested to see what happened. Keep your fingers crossed. Also have you or anyone reading this heard of Dr Hsu, a vascular surgeon in Conn. I am not sure if I asked this already. Many people on the Mals community have recommended him after having one or two surgeries already. He will review your case and then contact you. It is about a 2 month wait for his call, but everyone has said well worth the wait. He specializes in MALS. It is so hard to find a surgeon that understands and done surgeries for MALS patients. People have traveled from all over for him.
I hope you are doing well. I am going to keep going forward and looking for answers. We have to educate ourselves and support each other and I am so appreciative of this site.

I was wondering if anyone knows if MALS pals is the same as MALS community? I recently joined both, but it seems like I am just getting mals community. @kariulrich I know you have mentioned the site so maybe you know???Thanks

@kanaazpereira thank you so much for your support and the information. I read one so far and I do feel more reassurance from it. I look forward to getting into the rest of them. Thank you and this wonderful site!!