Median Arcuate Ligament Syndrome (MALS)

This is a great site with helpful information!

Hi @kariulrich , sorry your sick. I have been fighting ear infection and congestion as well. No fun and I know if your like me, which sounds like you are, we get sick longer and harder..... Anyway, what I found helpful for the congestion is a nettie pot. Not sure if that is correct spelling. There are the little salt packets you pour into the container (whichever you choose. there is a squirt bottle, teapot like one) Sorry you probably already know this. I do this a bunch of times a day, and that really helps my congestion. I used to get sinus infections all the time, now hardly ever. Another thing is eucalyptus oil or something like that. forgot the exact term right now, but pour a little in the shower and that really helps open things up. They used to sell these big tablets you could put on floor of shower, very similar effect I loved them. Can't find them anymore...I thought they were awesome. Also humidifier. I am sure you know all this stuff already and of course REST and Fluids....I know I definitely don't drink enough and that is important. You should maybe keep a water bottle that tells you the ounces so you can make sure you drink a certain amount. (I should practice what I preach Ha Ha). I find it difficult sometimes because sometimes drinking water hurts my stomach. Do you find that as well? Of course maybe a bone broth soup. If you have like a chicken broth you can scramble an egg and slowly drip it into the broth as it is boiling and you get egg drop soup. It is good and you will get some protein. Well if I can think of anything else I will let you know. Good luck. You have helped me with such good advice and guidance, I wish I had something better here to help you.....please let me know how you are doing....
Oh one more thing, the hot boiling water and you put your head over it with a towel...does help...Feel better soon
Jill

@mmifflin if you don't mind me asking, do you live in that area? How did you find your surgeon and do you have a gi dr. there as well? I am having a difficult time finding someone that understands and has experience with Mals. My vascular surgeon at Mayo in AZ is wonderful, but doesn't have much experience with MALS and said there are very few patients at that site. I am willing to travel if I can find the right team of drs. Thanks, Jill

Hi, Iam happy to share my experience and journey, I self referred myself to Mayo, I started with a GI doctor. We live over 5 hours from Jacksonville so after my consult with GI the team there did an amazing job of scheduling additional tests during my stay and by the end of the following week I was seeing a surgeon for possible laparoscopic MALS surgery. That surgeon spoke with the MALS surgeon who sent me to a vascular surgeon who ordered an angiogram which resulted in being positive. The surgery was scheduled right away, we extended our stay and again found Mayo very accommodating. My surgery was a success thus far.
Have you had an angiogram?

@mmifflin thank you for sharing. OH yes. I had open surgery in 2014 for both celiac and sma arteries. I had no idea about all of this at the time. I thought I would be back working in a month, still not able to work. It was a 7 hour surgery. ICU for 3 days and 4 days reg. hospital. It was a long difficult recovery. At about 5 months on a check up they noticed arteries narrowing again, however at that time, my dad suddenly passed away, I had a lot of responsibility thrown at me, I was devastated, and mom was showing signs of early dementia. I ignored what I was hearing, couldn't deal with me at that point. Finally Sept 2015 had to get stents placed in both arteries. Open by pass would have been best but I physically was to weak to handle that. Plus I was concerned about taking care of my mom. ....so stents was only thing to do. Was okay for awhile, then symptoms again. Was told I had SIBO, had 3 different tests done over 2 1/2 years by different places. All positive. Problem was never could afford the xifaxim and then never had anyone to follow up. My last GI dr was great and she referred me to a specific gi dr. at Mayo because I was moving to the Phoenix area and she was changing practices and felt I needed some intense follow up. I didn't get that dr. but I got another. She dismissed my MALS right away, it was vascular, not her concern, so that was a red flag to me. In her report, she took down all my symptoms and history incorrect, and basically said ibs but will run a bunch of tests. First test hydrogen breath for sibo, Mayo has a different protocol I guess then everywhere else I have gone or read is the way to go. They did a 2 hour glucose test. I had always done at least 3 hrs lactalouse and they would stop then because my numbers were so high. She said I didn't have SIBO. I was blown away and expressed how I didn't understand that after 3 tests, and drs and still even worse symptoms how it can just go away. I explained how I was concerned about the different testing and she said that is the way it is done and maybe it just went away. I was broken hearted; here I thought I was coming to get 'fixed' and get the opposite. However, I did get a wonderful vascular surgeon, but had to get the referral from my primary. He did take a new ct scan and thought there was some occlusion so he wanted to do angiogram and if anything go from there. He did and celiac got ballooned. the only issue is as he even said there are not many MALS patients at that Mayo so not much knowledge about it. I really need a GI that works with me and believes me and a vascular surgeon that has done MALS surgeries. I also believe that the ganglion nerves are part of the pain and if they aren't' removed that can cause pain even if there is not a flow issue. My GI said she never heard of that or saw any research on that. I have several publications that state that. My vascular knows that should be done, however that is not clear from my post op report. My original surgeon in 2014 was awesome, but he moved to Texas. I am trying to get in touch with him now. Sorry for so long, but that is why I am looking for a good 'team". I don't want to be negative towards anyone. Like I said my vascular is awesome, but he just doesn't have the knowledge of MALS, and GI, well I won't be going back. Maybe I can get a second opinion with in Mayo. I would like that. So I take it you were happy so that is wonderful.
So had your surgeon done many MALS surgeries? Do you mind me asking his name?

Hi Jill!! I am such a chicken when it comes to a nettie pot.... how silly is that? I can endure surgery but am frightened to put water up my nose LOL! I am the same way about drinking fluids... they sometimes cause pain and I feel like I am getting dehydrated from not drinking enough fluids. I did have my husband go out and buy some chicken noodle soup, I will try that tomorrow. Your advice is VERY helpful and I appreciate it. I will try the towel trick also, what a great idea. It is so dry here in Minnesota right now, that is not helping. Sorry about your ear infection 🙁 Yuck! They are so painful. I have a follow up appointment for my MALS etc at the end of March. I think we will up the Cymbalta then... I don't think my doctor will be pleased with the additional weight loss... I am still not as low as I was prior to my second surgery but it is getting close. How are you feeling lately?

@kariulrich someone was kind enough to let me know that you can get Eucalyptus tablets at Amazon.com if you are interested...

Hi Kari, my son and daughter can't do the nettie pot either. They say they 'choke' on it. I am like, "Just do it!!" haha. IT is kind of weird but after a few times it is a breeze....So do you think the Cymbalta is helping you? I tried to wean off my Cymbalta and switch to Savallea but I am not sure if it was the switch or my ear, but wasn't feeling well, really lightheaded (more than usual) but I woke up and had a huge red circle on my cheek to under my eye and that was all puffy. My dr. said could be allergic reaction so stop Savella. I couldn't go to her because I am so far since I moved, almost 2 hours, but she is so awesome. She understands me and knows all my history. That is hard to give up when we are as complicated as we are.
I was feeling discouraged again lately. I saw my vascular surgeon who I love. Had an ultra sound and says all looks good. There is sufficient blood flow. Celiac is good and that is the one that had balloon. My SMA though is still narrowing but numbers compared to what I have had is fine. I told him I still have pain, and about the ganglion nerves. He suggested the block, but both my primary and he said I should see a cardiologist for POTS and I wanted to do that before the block. I can't get in until the end of April and that is with my dr. calling. I am going next week to do the anal manometry which I am dreading. I canceled the 2nd test, the xray of me trying to move my bowels. Just can't do it. I emailed GI dr. to let her know. I also mentioned about the ganglion nerves and how that can probably be causing pain and about the block. She shot me down. She said she has never heard of that , they just release the compression and she said there was nothing in some American medicine research data base on that. I have some of the research saved for my own research. They are from respected publications. I wanted to send back to her but politely some how, so she could learn, but I don't think it is a good idea. I feel I need another GI. I feel she fights me, not works with me. Plus I need someone who understands MALS. My surgeon also said he doesn't have much knowledge of MALS because there are not a lot of patients at that Mayo. I really like him but he has never preformed a MALS surgery, so I wouldn't want to be the first. So I am kind of lost right now. Not sure what to do. I think I mentioned to you about a Dr. Hsu in Conn. that people on MALS awareness are really happy with. There have been quite a few that have had the surgery awhile ago, some recently, and some just now. It is just I want someone near me. I can't keep going there for follow up. I think even if I got the nerve issue resolved, I still have the chronic stenosis which is different...who knows anymore...
Oh Well again this is a long reply, I'm sorry..you need to eat that chicken noodle soup and drink liquids....I don't even think I drank a bottle of water today so who am I to talk....haha Well I hope you get to feeling better soon. My ear is better and my big red circle and puffy eye are getting better so that is good. Try to be positive... : )

Hi Jill! I am not familiar with Savallea but I am going to read more about it. It is so difficult when we cannot see a physician that gets us! The loss of a team member can be devastating and difficult to navigate. Regarding sending the recent publication to your physician... never hesitate to educate them! Please continue to advocate for yourself, you know your body best and with MALS the pain is complex, I don't believe it is from a single source. I think it as the perfect storm within our bodies several elements must be present to create thunder, lightning and rain... it is not just a compressed artery. That analogy sounds silly but that is how I think about my pain. I am feeling a bit better with this cold... the chicken noodle soup tasted wonderful... with POTS you cannot get enough salt! At least for me!! I just got a book in the mail... it has some good points. I was thinking of purchasing a couple copies to give out to my healthcare providers. I am not familiar with the author and do not know his credentials so keep that in mind ....https://www.amazon.com/Median-Arcuate-Ligament-Syndrome-Pathophysiology/dp/1483474747/ref=sr_1_1?s=books&ie=UTF8&qid=1519403165&sr=1-1&keywords=median+arcuate+ligament+syndrome

THANK YOU!!!!! I am going to look them up now! I appreciate your help. 🙂