Median Arcuate Ligament Syndrome (MALS)

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.

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

@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.

@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

@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.

Thanks

Hi @dylanmals I know applying to social security can be a nightmare. I was fortunate that with my long term disability co. they offered me this 'Advocator Group" They were wonderful. They handled everything and any question I had they answered. They were on line so that made it easy to ask and get quick responses. I talked to my lawyer like once or twice on the phone so I was scared, but this is all they do. I met her at the hearing. Let me step back. They denied me twice, but you keep appealing....they always deny...this way you get a hearing date. The judge has all info at this time, med records and letters from drs and my daughter wrote one on how she has to live with me and help me out with house work and such. I had/have a few things going on, but judge just asked a few question legal stuff, lawyer answered and then asked me a few questions and I answered and she approved me right there. Still takes a while for paperwork of course. Then once ss disability pays you a lump some of past due benefits, I have to pay back my long term disability some and the lawyer fee. So nothing out of pocket and a little left over. I know this is long, like all my posts, but it gives you an idea. @kariulrich I know I asked you about this before and you were denied, but you should try again and keep appealing. It is not fair to be in pain like this and have to work as well. I don't know what I would do. I was fortunate to stay with my daughter for a while. Anyway, they said I had the following severe impairments: peripheral artery disease, chronic fatigue syndrome, and vascular stenosis. MALs worded different except for CFS....Good luck to you. You should look up The Advocator Group and see if you can get help. Let me know if I can help you in any way.

Thank you

Ok, I have to really vent right now. I will apologize for how long it is right now.......I haven't been happy with my GI dr. at Mayo. I was referred by my GI because of SIBO and she didn't have capabilities to continue testing and so forth. I was thrilled to get into Mayo. First visit with new dr. who is a Fellow, said you have already been to 3 GI's what do you think we can do different? Right there I wanted to leave. I said I was referred by the 3rd GI for SIBO. FIrst GI was in hospital clinic but so busy couldn't get appt. 2nd GI was for when the 3rd GI was out on maternity and he wasn't very good, rushing me..Not jumping from dr. to dr. like she made it seem. So then she got all the info ,, my history wrong on her report. To me that was crucial since I thought the drs. collaborate and when I would go to vascular they would get wrong info...which they did and I had to correct that as well. I say this because I knew then it wasn't going to work. I told her about my MALS and she just dismissed it and basically said doesn't concern her, that is vascular surgery. I should have walked out then. She also said I didn't have sibo and that was that, she has run a bunch of tests I believe to say she tested for everything to cover her own butt
if you know what I mean. Even if a test was a little off, she would say that is fine. Well today I want to freak out. I told her I didn't want to take a certain test and then went on to say how I have researched and heard how much the ganglion nerves play a part in the pain. This is the response I got from her: "With regards to ganglion nerves, I am not familiar with removal of ganglion nerves as part of the MALS surgery. Typically, decompression of the artery is pursued. In addition, I have not been able to find any articles on ganglion nerves and MALS in our national government journal database. At this point, I do not believe the ganglion nerves would be a significant contributory factor to your pain." This I believe is because I told her some of research was from published papers in medical journals. Am I wrong for being so upset? Am I wrong for saying I want a new GI? How can I work with her when she patronizes me. She did this to me as well with my SIBO test. I had 3 positive tests done prior. The Mayo test was done with glucose, all sibo experts have said must be lactulose and at least 3 hours. She did 2. All previous tests done at different labs were lactulose and 3 hour. I tried to explain my concerns and tell her that and she said no published material on that....I was heartbroken because I thought I was finally going to get my sibo resolved and maybe feel better and she is saying I don't have it. Then I got a great vascular surgeon who said to me " Ganglion nerves should have been removed with first surgery" I should have him call her.....anyway, but he doesn't really know MALS and is honest with me about that and listens to me. Okay this is so long but I am so upset and furious. I am wasting my time with her. Am I wrong?
I thought I had saved all these articles but of course now I can't find them. If any one out there has any links or articles that talk about this I would appreciate if you could send me the links. I am going to look again right now. I found so many great ones, I don't know what I did!!!! I need to show her this. I also want to switch drs. I know @kanaazpereira you have mentioned calling and letting Mayo know my concerns and I hesitated because I don't like to make waves, but I want to so they can understand I need a GI dr. that understands MALS and is willing to work with me. WITH being key....Thanks for listening......

I am trying to find out ages of everyone on here. My daughter just turned 11 on February 13. She has been in pain since Jan 7, 2018. The pain has gotten so bad that she is having seizure-like actives with altered consciousness episodes. She has had CT Angiogram which supported MALS, she was uncooperative for the arterial flow ultrasound. We are trying to figure out if there is anything neurological or if everything is related to pain from MALS. I am thinking Celiac Plexus Block may be the way to go initially because that would give us some time for counseling to help the psychological ramifications from the MALS pain. Please comment or give me any suggestions. Our life has stopped the last 5 weeks. She has been in and out of ER’s ( 8 of them to be exact) and today will be 12th day in hospital since Feb 1.