Median Arcuate Ligament Syndrome (MALS)

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/

So sorry to hear about her findings, who, what, and where did she get treated? Can you tell me if she was diagnosed with all 3 at one time and with only 1 Test? I hat a CT w contrast a couple weeks ago that says Nutcracker Syndrome but since I’m not able to see any vascular surgeon till April. I think I have DVT too in my left leg, but they still haven’t been able to rule out, further test needed apparently, my
regular doctor doesn’t know anything about any of this stuff, and I was horrified after being taken into the ER after my husband called 911 only to be negligently taken into be told by the ER doc I would have to follow up without so much as an physical exam,. EMT who took me by Aid car told ER I was experiencing Chronic Back and sciatica and to would need to see a physical therapist. They wouldn’t listen to me and my husband. I feel like I am going to die and nobody has the experience to know what this is, and there is No way I will go to the ER after what happened a couple weeks ago, I’m still traumatized seriously 🧐, I am getting worse every day now, the pain is unmanageable, I am bedridden , and have filed a amendment to ER negligent visit. Thank you for any good advice to help me

I am so sorry you are dealing with horrible pain too and had a negative experience.

Honestly it has been several ER visits, multiple doctors, what I would say misdiagnosis and a lot of pain for my friend. She was finally referred to a MD doctor after hearing a similar story of another Amish young lady. It was several months of waiting for that appointment, a very long trip, but she did finally get some answers and recommendations for further tests to be done at home. (One of those was the plexus block). She now found and has an internal medicine doctor that has been very compassionate and has been helpful in trying to refer to a loser vascular doctor. Thanks to MALS PALS fb group we have stories and doctor recommendations! If you aren’t on that group I would highly recommend it as it is active and filled with friends going through the same thing. It gives hope! You can ask questions!

I hope that you can find help soon. ❤️