Median Arcuate Ligament Syndrome (MALS)

@astaingegerdm may I ask, how long have you had the stent and secondly do you have any monitoring of the stent done? Curious about what your doctor has suggested. I apologize if you have posted this information before, our group has been growing and I am not always good at recalling everyone's experience. It is so good to hear success stories!! Thank you so much for posting your experience it is encouraging. I appreciate it.

@vdolson
I know how your mother is suffering. Took me a few years to get diagnosed. I went to a well known university hospital and was seen by the chief of GI surgery. He told me pros and cons- including it might not change symptoms. I decided to go ahead- couldn’t get much worse. Laparoscopic surgery. All went well- nerve ganglia removed too. Symptoms recurred in a few months, because the artery never straightened out. A stent was placed and fine since then. I would recommend looking into university hospitals and interview. One does not have to have surgery unless one feels it’s right. I am happy I went through with it.

Welcome @vdolson! Happy to have you here. Your mom's case sounds like a friend of mine, same situation. May I ask the age of your mother? It does seem to make a difference. I would recommend that your mom see's a vascular surgeon who has experience with MALS patients, and those who have had multiple surgeries. May I ask where you live? There is a list of physicians by state that other MALS patients recommend. I have experience with open surgery, I have had a bypass of my celiac artery with a Dacron graft. I had a revision done about 3 years ago. My next question, with your mother's multiple surgeries, have they all been due to MALS? Does she have an underlying connective tissue our vascular disease? How are you both holding up? This is a stressful time trying to figure out the best options!

My mom has been dealing with what we now know is MALS for years. Her surgeon had recommended surgery and we are trying to figure out if open or laparoscopic is better. He this laparoscopic but so many has said the open last longer. Also we are trying to figure out who is the best specialist for this as her dr says hes not. My mom has had 2 other surgeries to place a stent and then to open it because it got a blood clot and place a 2nd. She has had a hard time recovering as that was in Nov and she is getting worse. Can you perhaps point me in the right direction for a Dr and opinions on how to do the surgery please.

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??

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.

@claudiabrende... I thought I responded to this post? Yet I am not seeing my reply! I am so sorry. ( It was a long reply too lol) Anyways, please do not give up. You are your best advocate, and we are all with you as you go through this journey. Just know you are not alone, and no matter what the diagnosis... our symptoms are similar so I think you will find this group helpful. We are small but mighty! I know your scared, deep breath, one moment at a time. Gentle Hugs!!

Dear MALS friends and family, I have had the opportunity to meet another MALS patient online who shares her MALS experience on a BLOG! I thought it would be helpful to others who wanted to follow her journey. She gave me permission to share this here. (Her introduction was done as a guest blogger on my personal blog, if you are interested in learning more about her: https://fibromusculardysplasia.blogspot.com/2018/08/median-arcuate-ligament-syndrome-mals.html OR you can go directly to her blog: https://www.itsnotibs.com/single-post/2018/04/05/5-Ways-to-Provide-Comfort-in-Impossible-Situations Thank you!! Hope you find this helpful!

Yesterday we saw a Gastrologist who is prescribing testing for stomach emptying and another related test. Today we saw an Infectious Disease Specialist who said we can likely dismiss Lyme's disease but Emily has had another blood test to be certain Lyme's disease is not present. This afternoon I contacted Mayo Clinic in Rochester, MN and have registered Emily. Tomorrow August 2nd I will be contacting the Vascular Surgery department at Mayo for a consultation. The Vascular Surgeon who removed Emily's appendix is a candidate for performing Emily's surgery which looks more and more likely will occur at Mayo or in Waukesha WI. I want to consider all options make sure Emily is in good hands.

@claudiabrende I know how it feels to be scared, and it is not easy being a single mom with an undiagnosed illness. Please know you are not alone, we have a small but powerful group of people here. As difficult as it is to be labeled by the medical community do not give up advocating for yourself. The words one day at a time seem insurmountable when you are dealing with symptoms, one moment at a time. Remember your children are resilient, although they should not have to be. May I ask the ages of your kiddos? I think that has always been the most difficult thing with my illness, concern over my kids. As parents we can endure so much, but when it starts affecting our kids it is overwhelming. The pain is so difficult to cope with, and there are never easy answers. Each person is different. I have tried so many approaches and continue to seek ways that keep me from the ER. It is humiliating when you are at your weakest and physicians and nurses think you are seeking for alternative reasons. What many do not understand is that by the time we end up in the ER we have exhausted every possible avenue for help. More education needs to be done. I know it can be frustrating for our healthcare providers as well, as there are no easy solutions to so many conditions.