Median Arcuate Ligament Syndrome (MALS)

Welcome @mmifflin; may I ask what brings you to Connect? We look forward to getting to know you.

@mmifflin I never know how to read these posts sometimes so, were you talking to me? and if so, what info would you like?

I’m interested

Kari,
I apologize, but I had to look up MALS and realized it is marked by abdominal pain among others symptoms. You mention the celiac block. Can you explain where this was done (anatomically), how many times, and your results. I have had them for pancreatitis pain and not really received much relief, but just wondered if there was another location for the injection that may have been more successful.
Gary

@tjriley Welcome to Mayo Clinic Connect! I was diagnosed with MALS over a decade ago. I am now 50 years old. I believe I had symptoms most of my life and they went undiagnosed for many years. The seizure-like activities with altered consciousness level symptoms is not something I have heard before with MALS pain, however it would not surprise me if this is the way she is coping with the severe pain. MALS pain can be severe and debilitating. I am happy to hear you are going down the neurological work up avenue. Both MALS and Seizures can be a difficult diagnosis and one that take time and patients. I think starting with the celiac block is a wise decision given her age age and symptoms. There is a physical component to MALS along with a psychological component that is not addressed properly in my humble opinion. A good therapist that understands chronic pain and rare disease may be helpful to your daughter, in addition to the block. For me MALS has become chronic and learning coping skills and how to become my own advocate through therapy has been helpful. To give you a bit of my background I have an underlying vascular disease and connective tissue disease that went undiagnosed through out my teenage years through early adulthood. MALS was found through workup for my vascular disease and once it was identified it took me three years to be comfortable seeing out treatment. The pain like I said earlier can be severe, it lead to food avoidance and malnutrition. I have had 2 open surgeries for MALS. Many children do well with the laparoscopic approach to correcting MALS. This diagnosis takes a toll on a family, and I cannot imagine what it must be like to see your child go through this. Please know you are not alone in this. I am so happy you have found Mayo Clinic Connect. This is a small group but an amazing, strong supportive group. Stay strong and take one moment at a time.

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.

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......

Thank you

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.

Thanks