← Return to Median Arcuate Ligament Syndrome (MALS)
DiscussionMedian Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: Oct 29 2:54pm | Replies (1225)Comment receiving replies
Replies to "Hi @kariulrich, I haven't connected with you in a while, but I have kept up on..."
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!!
@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
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