Median Arcuate Ligament Syndrome (MALS)

@blessedgma you are so sweet. Please keep in touch on how you are doing, and I will let you know if any new developments happen. Hopefully there should be some. I requested Mayo give me another GI dr. I would be more comfortable with and who understands my diagnoses more. She has been recommended as well. I explained my situation so hopefully I will here soon. I am suppose to be seen by a cardiologist as well. I need an cardio electrophysiologist and they didn't give me that so hopefully that will get taken care of. I am suppose to get a response in 1 -3 business days and today is day 3????keep your fingers crossed. I really don't want to get the rug pulled out from under me again. That is how I felt after my initial visit with my GI. I should have complained then, but didn't want to make trouble. Oh well. Take care of yourself. and Kari you as well. Oh and I did do the DNA/gene testing for the pharmaceuticals and I got the results and have no idea what they mean, but I am reviewing them with my dr. in 2 weeks.....
Jill

Thank you so much for your reply. It really does make sense about how it is all connected. I agree about feeling like the more I read, the more frustrating this is. It's nice that we aren't alone, isn't it? I think my frustration comes from seeing how many people are still suffering, (like you and Kari). Everyone has so many of the same symptoms, yet, also very different ones as well. I guess it's true that we are all as different as our thumb prints. Know I am thinking of you and Kari and praying for you to have a season of feeling well!!

Hi @blessedgma that is so nice of you to mention me and that you were thinking of me. I haven't been on in awhile. I actually have been on MALS pals and mals awareness quite a bit. It is just MALS related and has been very helpful. They have talked about back pain. Someone had mentioned their daughter had 3 bulging discs after her mals surgery. I think there was something else mentioned as well, so when I was reading what you were writing, I thought there may be a connection. I am no doctor, this is just from what some other patients had said. I also have back issues. I had some before, but honestly my back is so much worse after surgery. It was noted in my post op report a disc bulge at L5-S1. I was assuming that is what I had before. My left side under my ribs feels like a large slab of wood or brick or something is there. I can't bend sideways and I feel it constantly. I assume that is all scar tissue. Also if you google an image of ganglion nerves, you can see how they are around celiac and sma arteries, but they look like they do go back to the spine. I have also read that some drs believe that these nerves need to be removed all the way back to the spine because they can be the cause of pain. This is just things I have heard and read. I do believe about the nerves though. I have read many published medical articles about the ganglion nerves needing to be removed as well.
I don't know if that helps any, or makes it more confusing...I know everyday I think I just get more confused and frustrated. I just need to find a really good dr. that has treated MALS and understands it.
Hope you are doing well, well as good as can be living with MALS....
Jill

Hi @kariulrich, I haven't connected with you in a while, but I have kept up on most of the posts. Just wanted to check in on you and see how you are feeling. I've been praying for you and Jill, as it seems things are very difficult for you both right now. You've both been on my heart.
I remember when I first posted with you, that I shared my concern that it seems that most people don't get relief from this MALS, but you encouraged me by giving me advice with eating and that those that get better don't necessarily stay on the connect since they are "better". Anyway, I just wanted to thank you and seek your opinion on something. I was reading a couple of your past posts, that you are doing a paper for your nursing school about MALS. I also bought that book that was recommended on MALS Pals facebook page. (Sadly, I feel like I am reading a foreign language, haha, it's so far above my head!!) The book mentions that the artery compression with the ligament occurs at or around the 12T vertebra. Well, I have been seeing a pain management doc since I have residual pain after my lap surgery on Nov 9, 2017. The pain is actually the very first symptoms that I had a couple years ago, sharp, burning or pinching under my lower right rib that radiates through my back. This pain management doc has been performing "trigger point" injections into all the sore or tender areas deep in my abdomen, on the mid/right side. It seems to be calming things down. Also, when he put pressure on my back, he said he found a very tender spot on my 12t vertebra. I will be having a cortisone injection into that area this coming Monday. So, my question is this: Is there a connection with the ligament compression and our spines? I find it very ironic that the locations are the same. I am asking because I have been pretty surprised that these trigger point injections seem to be helping, and if this cortisone injection helps finish off the pain, maybe this can help other people as well. I had to be convinced by this doc to even allow him to do these procedures as he has never dealt with a MALS patient, but he is very cutting edge. I didn't think he understood what I was going through and also, that my pain felt like it was deeper inside my abdomen. I was truly skeptical.
I hope this makes sense. I would love your feedback and I hope that maybe this info can help others.
God bless

Hi Kari, Thanks for that info on the book. I will look into that. I definitely believe it is not from a single source. There is no way. It seems like that should be common sense. These arteries are connected and bringing blood supply to our major organs in the stomach.....hello I think if the blood supply was limited after awhile there has to be some kind of damage....hence pain or something....but what do I know....haha.. Well I am glad to here you are feeling better. Maybe I can get the Eucalyptus tablets and book at the same time and not pay for shipping........anywhere I can get a deal.....be well and keep in touch. You always make me feel better once I talk to you. Thanks for that.

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

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

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... : )

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

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?