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Update on MALs situation
I finally got the ultrasounds yesterday to find out the severity of the MALs ( median arcuate ligament syndrome) it appears to be mild although it doesn't feel that way symptoms wise. Next step will be a phone appointment to determine if I am a good candidate for surgery. Once determined the date will be set, then it will be the 5 hour drive one way where I will have the surgery. After surgery I pray there are no complications considering I live in the "middle of nowhere" with no nearby adequate health care that has the knowledge to deal with MALs or possible afterwards complications.
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Good Luck on your surgery. I had open surgery a month ago and doing pretty well!. Just remember MALS surgery is major whether it be Robotic Lap or Open. Go slow on eating and exercise. Rest when you need to. This can be a long recovery, so be patient. Have you looked at the MALS Pals Facebook page. This is a great source of information and you can interact with real people and share concerns or experiences. Good Luck!
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2 ReactionsWhat is MALS surgery
ALSO KNOWN AS CELIAC COMPRESSION RELEASE PROCEDURE, A TYPE OF LAPROSCOPIC SURGERY. SORRY FOR THE ALL CAPS. MY CAT PUKED ON MY KEYBOARD MAKING THE KEYS STICK.
There are 2 types of Mals, one in which the blood flow is restricted and neurogenic in which the nerves are involved. You should have a ct scan with pictures taken on inhale/exhale. There’s a list of surgeons who have experience with mals which is important bc it’s a delicate surgery. Also, there’s a high percentage of patients who have other compressions so that’s important to check. Mine was progressive until the pain became horrific. It’s a long recovery but so worth it to not have mals pain. There’s two groups on Facebook that have information Mals Awareness and Mals Pals. I hope you find answers.
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3 ReactionsI had the mesenteric and celiac duplex ultrasound with inspiration and expiration along with full abdomen CT scan. Now I wait to hear back from the university which is 5 hours away. This is the only location in Oregon that does the procedure. (We are very short on qualified healthcare workers out here especially in the region I retired to. ) After I hear from them ; then it's the waiting to get permission from insurance company to receive any type of healthcare out here.
Being retired law enforcement in the scope I served in, not sure I want to create a FB account;-)
Sorry your pain was so awful , but glad you're better now.
If I would have stayed on the job just 2 more years I would be getting a pension, then I would have the resources to go to another state to have the surgery done.
Thankfully my issue is mild although it does not feel so mild some days.
Thank you for the support and suggestions.
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2 ReactionsCan you use family members Facebook page? When you join MALS you can post anonymously. These Facebook pages saved my life and are the best resource and support you'll find. You could probably make up a name to use. I hope you find answers.
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3 ReactionsI also had to retire early bc of pain. I also traveled across the us for treatment bc just 4 years ago, there were very few surgeons doing this surgery. I waited 9months so I could get the insurance needed. It’s sad that insurance doesn’t recognize that this is a syndrome that isn’t diagnosed very often, so they don’t see the need to use skilled surgeons. I hope you find answers.
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2 ReactionsThank you.
I had MALS surgery 2015, including nerves. I felt great at once and could eat normally.
6 months later I needed a stent due to the celiac artery was too compressed by the ligament to stay open. All great with stent until last year, 2023, when symptoms returned.
A different vascular surgeon placed a new stent and all is well.
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