Median Arcuate Ligament Syndrome (MALS)

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.

@kariulrich

I'm sorry, you have gone through all this and I can relate. I'm labeled a frequent flyer in the ER or drug sicker. This has been going on over a year but the last few months has taken a turn for the worse. I've been but on reflux medication, abdominal cramping med, a pain med I can take once daily probiotics. I do tons of holistic therapies as well. I can't get in till September 11th and I'm just scared. I'm a single mom and it's a daily struggle.

Nice to meet you @claudiabrende! Yes, I am a patient at Mayo, Rochester. I live in Albert Lea, which is about an hour drive from Rochester. I am fortunate to have them in my back yard. I have has issues with my tummy for as long as I can remember, prior to moving to Albert Lea I had seen numerous specialist in the Fairview and University of Minnesota. I can't tell you how many specialists I had seen prior to my diagnosis, it was 20 years worth of work up and the year after I moved to Albert Lea and was seen at Mayo I was diagnosed immediately with Fibromuscular Dysplasia and MALS. My weight has always fluctuated with symptoms, and at one point in my mid thirties I had a physician tell me I had an eating disorder that was caused by stress, depression and anxiety. I just cried at that appointment, which made him believe his diagnosis was accurate. I did not advocate for myself back then, I really believed the doctors knew my body better than I did. I second guessed myself constantly. All my tests came back negative, until a cath angiogram that showed my celiac artery was completely occluded. I was fortunate to have a vascular doctor who believed there was more to my symptoms and ordered the correct test. How are you doing? How are you coping with your symptoms?

Did you go to Mayo? I am having some of the same issues but all test show up negative besides numerous infections in my colon, intestine, giardia, cdiff, and kidney infections.

How are you doing since your diagnosis??

I was diagnosed with MALS in Feb. 2018

@pianoplayer your concerns are valid. I will say I have had surgery twice, and you will see that the people posting are what I consider "Chronic MALS" patients; however, we do not hear from the patients that have had great success from procedures but I do know they exist. It is uncommon to be chronic. Additionally, in my humble opinion, MALS pain is multifaceted. The cause of the pain is not fully understood, I believe there is a vascular component, a nerve component and an anatomy component. The ganglion tissue alone (nerve component) is so complex- it is thought to be the second brain the body. I have had ganglion tissue removed, which was helpful for awhile ...3 years to be precise and the next surgery they injected me with steroids to calm down the nerves. I have also had 2 blocks. I have heard that many vascular surgeons recommended blocks prior to surgery as it has been an indicator if the surgery will be a success. Emily is still young, so her chances of surgery being successful are greater in my opinion. My first surgery I was in my 40's and my artery just could not open up like it should (arteries are flexible...however like a garden hose, kink it for 40 years and it will be difficult to get the kink out). Hope that makes some sense and helps you??