← Return to Median Arcuate Ligament Syndrome (MALS)

Discussion

Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: 3 hours ago | Replies (1229)
Comment receiving replies
@ally2104

Hi, I am sorry you have been dealing with this for so long! I don’t know if dizziness, lightheadedness, and almost fainting can be caused by MALS. However I do experience these symptoms as well form something called POTS(Postural Orthostatic Tachycardia Syndrome) which is a common comorbidity of MALS.

As far as I understand there are 3 test that can be used to diagnosed MALS the first 2 to being a Doppler ultrasound with breathing protocols and a CTA with contrast and with breathing protocols. The other test being a celiac plexus block, which is usually used after a CTA and/or a Doppler to confirm a diagnosis. However a celiac plexus block if successful combined with clinical evaluation can be diagnostic on it own, even when a CTA/Doppler are normal because MALS can sometimes have a neuropathic presentation.

I personally just had to go to doctor after doctor till I found one that finally new about MALS and who finally took me seriously. So unfortunately the only thing I can say there is just keep going till you find the right doctor. Also I am not sure how helpful this is but there is a list of MALS friendly surgeons on the national MALS foundation website. Not ever doctor on there is going to be the right fit of course but it may be a place to start. It unfortunately won’t let me post the link to the list but if you google, National MALS Foundation, it should come up and list should relatively easy to find on the website.

Jump to this post

Replies to "Hi, I am sorry you have been dealing with this for so long! I don’t know..."
Lanni Solochek | @lannisolochek | Aug 4, 2022

@ally2104 , I noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
–List of MALS Surgeons https://www.malsfoundation.org/_files/ugd/956de6_16725e2b0eea4f4e849bc649068ac4ec.pdf

VIEW AND REPLY
bfort | @bfort | Aug 4, 2022

There is also 2 Facebook pages with so much information regarding MALS.
The top of the pages under Files, has lists of surgeons, and so much more helpful information.
You can hear first hand from MALS patients who experienced the different types of surgery available in additional to the planning, and recovery of the MALS surgery. It is a very difficult surgery and your must be prepared for the long recovery process. But recovery is very successful in most cases. Everyone is different. There is a Dr Hsu in Connecticut who has done over 700 surgery's. You can send your tests results to him for a consultation in Connecticut is too far. I had my surgery in Naples FL
I had my Robotic Lap surgery in May, and just starting to feel better but am hopeful things will continue to get better. Don't give up. Be your own patient advocate.
The Facebook pages is MALS PALS and MALS Awareness Community

VIEW AND REPLY