MALS and lower abdomen chronic pain

I am working with an Amish young lady who has been diagnosis’s with MALS, POTS, and Nutcracker syndrome. I would love to hear from others on this same journey as it is so rare.

I'm so sorry to hear you were diagnosed with MALS. It is a very painful and difficult diagnosis.
There is a website called. The MALS Foundation which is very helpful with how to handle MALS.
Also, Facebook has a great support page called MALS Awareness. It is an amazing page to learn and ask questions with real experience. But please be open minded because everybody body's and experiences may be very different.
MALS is a very rare diagnosis. There are not many doctors who know what it is or how to treat it.
I have had 29 tests and my gallbladder removed before I was diagnosed.
Stay positive. You need to be your own advocate to get things done. Please feel free to reach out to me. Good luck. 🙏🙏❤️

It is hard to watch my young friend going through this. Her culture isn’t allowed computers so that is why I am here to represent her. Through MALS PALS fb group I joined yesterday I have already found several local (ish) doctors familiar with MALS and Nutcracker. So hopeful some answers can be found for her.

I am so glad you have found some help! It is a process isn’t it?

Hello,
Recently diagnosed with MALS. Wondering if you had the celiac plexus block and or surgery? At mayo?
Thanks

Hi
Yes I had the MALS Surgery for neurogenic MALS and Median Arcuate Ligament release. I had the plexus Block prior to surgery and was pain free for almost 48 hours. Usually, its 6 hours. This is a guide to determine if you would be a candidate for MALS surgery.
Unfortunately, 5 months later and I still have the pain. My MALS surgeon says its not MALS, and a vascular surgery who did my mesenteric ultrasound says my Celiac artery is blocked with plaque 75%.
I sent my records to another well known Vascular surgeon, and he says its still MALS, and that my diagram is laying to low onto my Celiac artery.
Now I have to decide what to do.
This is so rare, everyone is so different. I hope this helps.
P.s. I'm scheduled for another Plexus Block in a few weeks. The block itself is a pretty easy test. Stay positive and don't be afraid to advocate for yourself..

I have been diagnosed with MALS.
I have had the vascular ultrasound and CT scan with breathing protocol and the celiac plexus block all completed last year, met with the vascular surgeon twice. I believe I have had every horrific symptom of this disease and feel like I am dying.
I am on day four of pain in my flank area all I can say is that it feels as though I have cracked ribs but in my upper sides both R & L and it radiates to my back It will spasm and I will tell you this pain is off the charts of a 10 , I am scared and truly don’t know what to do to help myself, I have tried more water and heating pad but that in itself is horrible because of trying to even get into my bed . I don’t want to go to ER if this is just the MALS … no one even knows what MALS is. If anyone has any advice on what I can do to help myself PLEASE HELP ME . Any tips and also will this subside at some point? I am sorry for the long post, but I am desperate I don’t know how much I can suffer…… Thank you for reading this I hope someone can help me 😔Josie

There’s only several experienced MALS surgeons. If you look on the amals Awareness Facebook page in the files they have a list. I’d be careful just using any surgeon as many MALS patients have unsuccessful surgeries and have to go for revisions which are much harder and sometimes impossible.

Mayo is not known for doing MALS surgeries.

I was just diagnosed with Nutcrackers Syndrome, I have been searching for answers to my forever worsening condition, I believe after reading about this rare condition I have had it all my life , but now it’s caused me to become bedridden. I’m searching for other people who have been diagnosed with this and let me know what treatment they did to help

Welcome @higham, I moved your message to this existing discussion:
- MALS and lower abdomen chronic pain: https://connect.mayoclinic.org/discussion/mals-and-lower-abdomen-chronic-pain/

I did this so you can easily connect with others like @lasirvent @vlk420 @bfort @djw4u @cnash1 who can offer their experiences and thoughts regarding your flank pain.

You may also be interested in this related discussion:
- Median Arcuate Ligament Syndrome (MALS): https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/