Median Arcuate Ligament Syndrome (MALS)

@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??

Pardon my redundancy in the following:
We celebrated Emily’s 21st birthday last week. Tomorrow we will be seeing a surgeon with capability in performing robotic celiac artery release surgery versus the initial vascular surgeon who diagnosed Emily with MALS who prefers laparoscopic surgery. Emily will also be seeing an Infectious disease specialist and a Gastrologist in a few days.

Two weeks Before her MALS diagnosis , Emily was diagnosed with Lyme’s Disease, and given Doxycycline, an antibiotic that resulted in Emily having migraine and abdominal pain. The doctor immediately put her on amoxicillin a generic antibiotic. The migraines stopped however the abdominal pain continued and led to a trip to the hospital emergency clinic, Emily’s Doctor prescribed a CT scan, which revealed celiac artery compression. We have a cousin who I found has MALS; however, Emily’s vascular surgeon said there is no data supporting hereditary disposition to MALS

I am concerned with the number of patients on the Mayo Clinic Forum who have had MALS symptoms return after surgery; even when the initial procedure included release the celiac artery, removal of ganglion nerve, and an angiogram detecting no compression of the celiac artery.

Yesterday I spoke to a person who had laparoscopic surgery releasing the celiac artery she said the ganglion nerve was not removed. She now feels fine after over two years of sudden attacks, which would result with her in a hospital emergency clinic, yet for two years there was no diagnosis of MALS until recently. Emily’s symptoms are different with constant chest pain around the solar plexus and abdominal pain after eating. Emily has had a CT scan two years ago when she had an appendectomy which when recently reviewed showed necking of the celiac artery. She recently had a CT and an angiogram, which showed the Celiac Artery compression. Emily has not had a Plexus blocker, which may relieve pain but would not cure the problem.

Should a Plexus Block be done before surgery. Should a celiac artery release procedure include a removal of the ganglion nerve “just for good measure”? If Emily were to have surgery to release the celiac artery, I want to be sure all that all necessary procedures are complete and thorough, which may include removal of the ganglion nerve bundle, yet I am sure the patients and their surgeons who have had symptoms return initially felt the same. I also question pros and cons about Laparoscopic versus Robotic surgery and also choosing a vascular surgeon specializing in celiac artery release surgery of MALS, versus a highly qualified surgeon in vascular surgery with high honors in his field with experience but not specializing in performing celiac artery release surgery.

@pianoplayer Welcome to our group I am happy you have found us. What a dedicated daughter you have, to be able to play piano at her level is quite an achievement. She has determination and that will serve her well in coping with this diagnosis. Yes there are risks to mitigate and making the decision to opt with surgical intervention is a difficult one. May I ask the age of your daughter? I agree with your doctor that consulting with other specialties first is the path to go, as you want to make sure all diagnosis and options are exhausted before you consider the surgery. I know the pain she is suffering is unbearable to watch, is she able to eat small meals or lost any weight? Both Cleveland Clinic and Mayo Clinic have excellent physicians that treat MALS so I know she will be in good hands. Please feel free to ask questions we have a great group of people here with lots of experience, we may not always have an answer but we are able to share our experiences with you.

My Daughter is majoring in Piano Performance and composition. As a piano student she practiced daily, she also accompanied for an opera, performed her Junior Recital, plays in church and at a restaurant on Friday evenings, when she complained of her wrists hurting we figured it was tendonitis until other joints began hurting. We took her to the doctor who diagnosed her with Lyme’s. She started taking an antibiotic and had a reaction resulting in migraine headaches and nausea. She promptly started amoxicillin and the symptoms subsided for a few days until she woke us up saying she had to go to the hospital not tomorrow but right now, this minute. The symptoms have continued and she has been diagnosed with MAL’s

Last week she had a CT Angiogram, which indicated a median ligament syndrome with clinical symptomatology. The video indicated two abnormalities, first a necking of the celiac Artery also revealed in a CT-scan two years when she had her appendix removed but not as severe an at present. Second, the path of the artery branching from the aorta has a narrow radius, 300-degree upward path rather than a long radius 210-degree path.

Her Doctor has performed orthoscopic surgeries to correct the celiac Artery Compression, and he recommended we have Emily consult with an Infectious Disease specialist and a Gastrologist before considering surgery. The Doctor also gave us a list of local surgeons and surgeons from the Mayo Clinic and Cleveland Clinic who perform this procedure using Orthoscopic or robotic surgery. Emily is suffering more than discomfort from this condition and we would all like to correct it as soon as possible; however, there are risks to mitigate.