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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: 11 hours ago | Replies (1229)

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@bachsmom

@kariulrich Not sure if I said this before in a post but some things have happened since...Finally getting my MALs diagnosis. I went to my GI because he preformed the last surgery I had. I was in so much pain I could barely talk. He asked me why and I was shocked to know he didnt have all my medical records since he is in the same group as my PCP. I explained to him the pain and the almost five years of tests and bloodwork and procedures and almost 2MM later still getting blood draws every three months. Had to quit my job. Having to sell my house. Cant take care of it anymore. My first symptom that has NEVER gone away is extreme distention of my abdomen.I posted before my photos. I can wake up with a flat belly and within an hour of moving around, look like Im ten mos pregnant with triplets. Its extremely uncomfortable and has cause back issues. This in addition to the 40lb weight loss from the MALs. Which getting back to the GI doctor.... looked at the few records he had and saw some blood tests in 2016 that came back abnormal on my liver and kidney. It seemed like not biggie to me because we did a repeat test and everything came back normal. So I and the Dr dismissed it. But not the GI doctor. So of course, the first thing he wanted to do was bloodwork. I told him the only way he was getting blood was if I could have a doppler ultrasound done also. So he agreed and I had the ultrasound the next day. The morning after the ultrasound, he called me. He said guess what. And i knew. I said.... I WAS RIGHT. he said yes you were. And scheduled me for a CTA. I asked about the bloodwork but he said he didnt have the results back yet. So i figured Id get the bloodwork and CTA results at the same time. A few days went by and no call from the doctor. So I called. Left a voice message. No response. THis went on for several days. I finally called and had my records sent to a vascular surgeon and she called me immediately to schedule a consultation re my surgical options. But the more I have dug and read, the more I see I need a cardio vascular surgeon if I want the surgery to work long term. I also have scar tissue from a tummy tuck that could be an issue and I want my surgeon to know what they are looking at. I want a MALS specialist surgeon and the first vascular surgeon i see tomorrow isnt. So i called Vanderbilt which is the only hospital in Nashville with a MALS specialist cardio vascular surgeon. I have an appointment with him to discuss also. I decided to keep the appt with the regular vascular surgeon just because I think I should at least hear two views. I want to know about the swelling in my belly that is just as debilitating for me as the pain. Im fine not eating to keep the pain at bay. but it doesnt matter if i eat or not, Im swollen ALL the time. Im bent over whenever I actually have the energy to get out of bed. I walk like a 90 year old osteoporidic woman. It's painful and I may as well stay in the bed- so I do.Even trying to walk around........, take a shower (i cant lift my hands over my head so washing my hair is a nightmare and i have to do it in stages. bathe in HOT water..Take a nap. Soap on my head. sit down. Rub soap in. Sit down.. Wash soap out. Sit down. Once Im done, Im exhausted and go right back to bed) ............it doesnt get any better. What little food/drink I have in the house I have delivered. And you're right, white carbs work best for me. water crackers, rice, bread, plain pasta. Anything I cant smell .. cause then Id be nauseous. And that sucks too. Other things that have been disastrous to my life are ... depression, forgetfulness, balance issues which are prob related to not eating. Not eating, Memory loss has been a big deal. THat, constant exhaustion, pain, and swelling. And I just found out I have skin cancer. Which is like a hangnail compared to the MALs nightmare...... Anyway that's a part of my story. Which hopefully is changing course very soon thanks to you guys and MALs Pals on FB. That suggestion has been very helpful too. Thanks for listening.

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Replies to "@kariulrich Not sure if I said this before in a post but some things have happened..."

Hi @bachsmom

I'm afraid all those symptoms comes with the condition. The brain fog, forgetfulness and memory loss make an already hard situation unbearable. Like you the crippling pain means I walk very slow like an old man; I actually walk holding my stomach in and I breathe shallow. I find being so lethargic is what I hate the most; days unable to lift my head off the pillow let alone leave the house. I get some relief from having very hot baths, I know hot water bottles are a little controversial but they work wonders for me. One bottle tucked behind my left side and another on my chest right over the pain. I use the hot water bottles with good thick covers, I even ended up making one from fake fur which keeps the bottle hotter for twice as long but releases just enough heat to help with the pain; it has become my new best friend!

I got a little tempted a few weeks ago and ate something from my no go list, what a mistake that was. The pain was incredible and for the first time my stomach swelled up like a balloon. I could actually feel my stomach slowly blowing up and the scar from my laparotomy starting to stretch. I'm glad you can eat something even if it is from the white food list, it's important that you try and keep the weight you have just in case you decide to have the operation. Surgeons really don't like operating on malnourished patients, the risks become far greater.

Take your time with your decision and keep digging and learning. Getting your records was a good idea; I got mine and noticed things the specialists didn't pick up on. One year my pancreas must have been affected as my blood lipids jumped up to a high level. The next year blood lipids back to normal but my blood sugar leaped to a high level. I always had high CRP results meaning inflammation. Also on the odd occasion an abnormal liver function test. I can't help but wonder if the lowered blood supply to these organs because of MALs causes the fluctuation in results.

Count yourself luck you have consultants who are wiling to take action, I'm still waiting for mine to decide if MALs is a condition that can be treated!

I am so sorry to hear you have skin cancer, I am hoping they caught it early and it can be treated easily.

Keep us posted
Mark