Median Arcuate Ligament Syndrome (MALS)

Hi @103196

This is my view, if you have a definite diagnosis that it is MALs then leaving it untreated may not be a good idea. I believe the longer you leave it the worse you will get and trust me you do not want to be in the situation I am in and many others where the symptoms are truly unbearable even life changing. My whole life has stopped because of MALs, I only wish I had been diagnosed 10 years ago and had the operation, I think my life would be so much different; instead I barely go out, I'm in constant agonizing pain and I don't eat. There have been a number of people who have been diagnosed early (meaning with little symptoms) and have recovered leading a normal life. You will have to go through the post to find them if you want to ask them specifics of their operation. I believe @annief has had the operation in Dallas and is showing good results. Maybe she can gives us an update on her condition after the operation.

Mark

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

if the symptoms are mild will surgery still be required, or can I just have it monitored?I MALS is left untreated,will it get worse with time or stay the same?I am confused because I don’t have the excruciating pain like I have been reading in the blogs.To me I think my symptoms have been mild.I do have some discomfort at times after eating.The pain is right under my diaphragm and lasts for a few hours.I thought it was just indiegestion. I eat very smalll meals but my weight stays the same or after a few weeks might drop a pound or two.

I agree with annief. It comes down to how you manage the symptoms, quality of life. You also don’t have to make a decision now whether to have surgery or not. Sometimes it’s best not to rush into making a decision.
When I got my diagnosis, I had suffered for years with bouts of excruciating pain. In addition, I had chronic intestinal inflammation- unrelated. I was told the odds that surgery would help, but decided to go ahead if there was hope for improvement.
This is not a life and death decision- you can wait and see.

I do not blame you for wanting to avoid the surgery. That would be my priority. From my own experience, Before the surgery I was eating enough most days to maintain my weight (that was not always the case as I mentioned in earlier posts). I could live with the smaller meals and not gaining the weight back but I decided on the surgery because I could not live with the other symptoms.

I took my time and sought several opinions which sounds like what you are doing. That was very helpful when I finally made the decision for surgery. The pain was very distracting at work and in life. Constantly thinking about what I could eat and how much to avoid any symptoms. Avoiding activity because what if the pain was bad or I would need to run to the restroom. I would have good days where I thought okay, maybe I can do this. Plus I read about people in worse shape than me. But my good days were few. I realized I really had no control. I always felt the best when my stomach and colon were completely empty. (Laxatives) 😊. But that’s not realistic long term. Looking back, most days I was just getting by.

I had no other problems like you do (migraines) so it was more cut and dry for me. Sounds like you are on the right track. Explore all your options and do not rush into anything. Glad they found it early for you.

I have a few questions about symptoms & surgery,My primary doctor ordered a CT scan because I had a chronic cough they couldn’t figure it out.Radiology found the crossed ligament by accident.Primary sent me to a vascular surgeon and he sent me to a surgeon to be evaluated.During that appointment,the Dr asked me several questions about symptoms.He asked me about tummy trouble,I told him sometimes I get constipated for several days then get nervous and take laxatives to help.When I do eat,my stomach kinda bloats & I get a sharp pain under my diaphragm that last a few hours(but I’m not doubling over screaming in pain).Because I’ve lost weight,about 10 pounds this year) He asked about me eating. I told him that I eat very little &sometimes avoid it cuz I know my stomach‘s going to get bloated. Based on my symptoms & the CT he thought I had MALS but wanted to do more tests.He ordered an US Abdomen Limited & a VL visceral/ mesenteric test.He called 2 days ago to tell me the results.It reflected the blood flow percentage in that area was lower so they suspect compression is altering it.He wants me to come back in to discuss options and surgery.I’m devastated & scared when they mention surgery. Especially when I hear of the long recovery time.My questions; what if my symptoms are caused by something else?I have chronic migraines so maybe I am losing weight because it’s difficult to eat when I have them.What if I’m getting constipated because of the migraine medication,what if my stomachs gets bloated because I’m having a big meal or it’s fatty.Could I have MALS with the only symptom is a lower blood flow in that area? Are you born with MALS or is it developed over time?Help!

@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.

Wow, I have to agree with sclindajanssen. If you can recover in a week, everyone will want that doctor’s number. 😊 But seriously, I had lapriscopic surgery as well. I have a desk job too and I attempted to go back after two and a half weeks. That did not work. I was so uncomfortable and exhausted. When you are sitting at home all day it seems like you could go and sit at a desk but don’t count on that. I ended up taking four and a half weeks off. Then I returned half days until I hit six weeks. I am back full time and doing ok. I try to move a lot.

My PCP was more helpful guiding me with the recovery. She said she has patients that have had a hysterectomy and take a minimum of four weeks off and this surgery is much more involved than that. I look forward to being 100% but I realize that will probably take months. Maybe if I were younger 😊. I wish you well but prepare for a longer recovery and consider it a bonus if it does not take as long.

“Feeling crummy” for a week is very alarming and concerning to me. I had lap surgery and it was way more difficult than the C-sections I had. I was back at work after 1 week but should have taken 2-3 weeks off. Recovery was 2 steps forward, 1 step back. Serious nausea lasted exactly 2 months after surgery and that is the norm. Intermittent pain lasted 6-10 months and was aggravated by sitting. I still can’t tolerate sitting very much and it’s been a year since surgery. My recovery from lap was average or better than average. I’ve read many, many testimonies on Facebook MALs Awareness and learned from them that open is more difficult than lap but most have better long term results tha lap. Much pain and nausea for 2 months and many say the 3rd week and 3rd month are tough set backs.
“Feeling crummy for a week” sounds very disconnected with actual MALs patients’ recovery. It’s a highly deep, invasive surgery. They start in the front and go all the way to the spine, cutting through many tissues. Pain is in front and in the back and it’s very hard to roll and sit up for a couple weeks.
A desk job is harder on the surgical site than a standing job because sitting causes compression in the MALs area. I got an elevating work station after 2 months and that is when I really noticed better healing and reduced pain.
Just be aware that surgery recovery for most of us is very challenging, especially the first 3 months but fatigue up to a year for some. So plan accordingly and avoid any major energy consuming tasks and events for 3 months.
With that said, I’m still so grateful for surgery because life is 95% better now. Life is great and I’m full of joy again. I wish you well with a quick recovery.

@kariulrich I'm looking at open surgery and being told I'll feel "crummy" for a week. Should I take that to mean I'll be out of work for a whole week but able to return after that (desk job doing computer work)?