Median Arcuate Ligament Syndrome (MALS)

Hi I’ve had surgery for MALS not sure if you’re still interested in this condition. If you would like more information please let me know. Thanks Rachel

I was told it was all in my head for nearly a year then finally they found it. I had full open surgery in 2013 here in Australia.

I am a lung cancer survivor only because Mayo doctors discovered I had lung cancer!, even though I never smoked! At Mayo, I went into life saving surgery immediately...All the while (2)
two years before local doctors told me my symptoms were in my head.
Get a second or third opinion, no matter how much you respect your physician!!!! No one knows your body like you!

I’m surprised you found someone in Australia because there was a news story about someone in Australia who had to travel to US for MALs surgery as no one could do it in Australia. So I’m glad there really is a surgeon for MALs in Australia. How are you doing now, 5 years later?
I had lap a year ago and now mild symptoms are just starting to return. I’ve been wondering if open lasts indefinitely.

Hi everyone, so good to see this page active! I came across my caring bridge page which has all my posts from my first and second MALS surgeries. In case anyone is interested in what it was like for me before and after surgery. If anyone else has a caring bridge page and would like to share it that would be wonderful! Thanks Kari https://www.caringbridge.org/visit/kariulrich

@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)?

“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.

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.

@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.

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!