Hi, I am a MALS patient, had laparoscopic surgery Feb 5th at Mayo in Jacksonville FL.

Sorry, I just meant I’m interested in being a part of this group.

We're so glad you are part of the group, @mmifflin. Talking, sharing experiences, offering support, and learning from each other – that's what Connect is all about. I'm certain that Mentor @kariulrich will join me in extending a warm welcome, and sharing her knowledge about MALS, as well.

Welcome to Mayo Clinic Connect @mmifflin! So happy to hear that Mayo in Jacksonville is taking on MALS patients! Would love to hear your experience when you feel up to it. Your surgery was recent, hope your recovery is going well!

This is a great site with helpful information!

@mmifflin if you don't mind me asking, do you live in that area? How did you find your surgeon and do you have a gi dr. there as well? I am having a difficult time finding someone that understands and has experience with Mals. My vascular surgeon at Mayo in AZ is wonderful, but doesn't have much experience with MALS and said there are very few patients at that site. I am willing to travel if I can find the right team of drs. Thanks, Jill

Hi, Iam happy to share my experience and journey, I self referred myself to Mayo, I started with a GI doctor. We live over 5 hours from Jacksonville so after my consult with GI the team there did an amazing job of scheduling additional tests during my stay and by the end of the following week I was seeing a surgeon for possible laparoscopic MALS surgery. That surgeon spoke with the MALS surgeon who sent me to a vascular surgeon who ordered an angiogram which resulted in being positive. The surgery was scheduled right away, we extended our stay and again found Mayo very accommodating. My surgery was a success thus far.
Have you had an angiogram?

@mmifflin thank you for sharing. OH yes. I had open surgery in 2014 for both celiac and sma arteries. I had no idea about all of this at the time. I thought I would be back working in a month, still not able to work. It was a 7 hour surgery. ICU for 3 days and 4 days reg. hospital. It was a long difficult recovery. At about 5 months on a check up they noticed arteries narrowing again, however at that time, my dad suddenly passed away, I had a lot of responsibility thrown at me, I was devastated, and mom was showing signs of early dementia. I ignored what I was hearing, couldn't deal with me at that point. Finally Sept 2015 had to get stents placed in both arteries. Open by pass would have been best but I physically was to weak to handle that. Plus I was concerned about taking care of my mom. ....so stents was only thing to do. Was okay for awhile, then symptoms again. Was told I had SIBO, had 3 different tests done over 2 1/2 years by different places. All positive. Problem was never could afford the xifaxim and then never had anyone to follow up. My last GI dr was great and she referred me to a specific gi dr. at Mayo because I was moving to the Phoenix area and she was changing practices and felt I needed some intense follow up. I didn't get that dr. but I got another. She dismissed my MALS right away, it was vascular, not her concern, so that was a red flag to me. In her report, she took down all my symptoms and history incorrect, and basically said ibs but will run a bunch of tests. First test hydrogen breath for sibo, Mayo has a different protocol I guess then everywhere else I have gone or read is the way to go. They did a 2 hour glucose test. I had always done at least 3 hrs lactalouse and they would stop then because my numbers were so high. She said I didn't have SIBO. I was blown away and expressed how I didn't understand that after 3 tests, and drs and still even worse symptoms how it can just go away. I explained how I was concerned about the different testing and she said that is the way it is done and maybe it just went away. I was broken hearted; here I thought I was coming to get 'fixed' and get the opposite. However, I did get a wonderful vascular surgeon, but had to get the referral from my primary. He did take a new ct scan and thought there was some occlusion so he wanted to do angiogram and if anything go from there. He did and celiac got ballooned. the only issue is as he even said there are not many MALS patients at that Mayo so not much knowledge about it. I really need a GI that works with me and believes me and a vascular surgeon that has done MALS surgeries. I also believe that the ganglion nerves are part of the pain and if they aren't' removed that can cause pain even if there is not a flow issue. My GI said she never heard of that or saw any research on that. I have several publications that state that. My vascular knows that should be done, however that is not clear from my post op report. My original surgeon in 2014 was awesome, but he moved to Texas. I am trying to get in touch with him now. Sorry for so long, but that is why I am looking for a good 'team". I don't want to be negative towards anyone. Like I said my vascular is awesome, but he just doesn't have the knowledge of MALS, and GI, well I won't be going back. Maybe I can get a second opinion with in Mayo. I would like that. So I take it you were happy so that is wonderful.
So had your surgeon done many MALS surgeries? Do you mind me asking his name?

I was diagnosed with MALS in February but also have biliary dyskinesia as well with Liver issues. But they were unable to put the stent or patches in as they could not get good vascular access and had a hard time putting in the arterial line. AS a result they decided to just take out the ligament with intent to put in rest later. I was a little disappointed but for now I am just waiting for the next velocity ultrasound to see where we are at. You mentioned you to had to have the procedure twice. Did your velocity change after the first procedure to their liking? My surgeon told me it would respond favorably ay first but over time it would begin to collapse again as a result of the vessel being used to that configuration. I am sure it won't be as bad this time just because the ligament has been removed. I have had other problems but have found I can't eat more volume and actually want to eat at times but still no real weight gain. Any thoughts would be helpful. Thanks.

Hello @perion, I appreciate you asking about my experience with the second MALS surgery. Like you, I have underlying issues. I have a vascular disease called Fibromuscular Dysplasia (FMD), and it is interesting that the Cleveland Clinic is finding several patients with FMD also have MALS, however not all MALS patients have FMD. For me, my first MALS surgery was an open surgery where they released the ligament and then preformed a bypass of the celiac artery with a dacron graft ( I was 40 years old at diagnosis, so my artery had been kinked for too long and it would not go back to it's normal shape) I agree with your surgeon, many times an artery will not resume an open shape, unless you are young when it is discovered. It seems the pediatric population has a better success rate at cutting the ligament and not having to address the artery after. Also at the time I had stenosis that affected my hepaticbillary artery and had a patch angioplasty with a bovine patch. Now jump ahead 3 years after my initial surgery. I did great for 3 years, I could eat, I gained weight and felt much better, but about the 3 year post op point I started to develop symptoms again. I had every test done under the sun to make sure it was not restenosis... and what is so strange is that all my tests, even vascular imaging did not have any significant changes. I continued to loose weight and was feeling awful, Mayo did a specific MRI that they were researching for vascular patients and that came back normal. It was frustrating to both my doctors and me. It is not common today for surgeons to do exploratory surgery when a patient's imaging and testing come back normal, but my symptoms same as with my first surgery, only this time my weight loss was more significant. My vascular surgeon agreed it was time to take a closer look. I ended up with a 8 hour surgery, it took a long time to get through the significant amount of scar tissue, but when he did he had an intraoperative ultrasound done which showed stenosis that in my graft that did NOT show up on any CT, U/S or MRI previously. He ended up doing a revision of my graft. I will say, not to frighten you, but to prepare you, each surgery was an enormous recovery and difficult. It takes a minimum of a year to recover for many. BUT IT IS WORTH IT!!! I will never regret having the surgeries, as for a period of time it changed my quality of life. When it is time for you to have surgery, if that is the path you decide to take, you will have a lot of support here! Like I tell everyone, you are not alone and you will get through this. So ask questions, lots of questions!! Take notes... and most of all advocate for yourself. You know your body better than anyone. I hope this helps??