Median Arcuate Ligament Syndrome (MALS)

LINDA!!!! I miss you! I am so happy to see you here. Will you be going to Mayo Rochester by chance? I remember your experience vividly, I have thought of you often through the years. Sending you gentle hugs!!

I agree with the points you made, especially that we deserve more than a 100 person study. Let's see if we can make that happen!!

Kari,

Thanks so much for your reply. I hope all is well with you and family. Yes, I'm in the planning stages now. I'm getting FMLA at work. I'm having so many issues with my stomach since my MALS surgery, and no doctors want to do anything. I now have a hernia as well. I'm miserable. I was glad to find you on this site. I will give you more details when I know more regarding my visit to Mayo. Have a blessed evening. 🙂

@bl3ss3d @sclindajanssen
I worked for a hospital and normally I could find the CPT code if I needed it. After I posted my reply yesterday, I thought I’d do some research and make a few calls to see if I could get it. Nope. Just to clarify to anyone else besides me who didn’t know, the ICD-10 gives the diagnosis code and CPT is the billing code - an important distinction that I was confused on. @sclindajanssen - Thank you for the link on CPT codes. It was very helpful! Best wishes and prayers to all my fellow MALS sufferers!

Hello everyone..was just recently told I have MALS and would need surgery. My pcp admits she doesn't know much about this condition but is doing the research and trying to find the right surgeon for me. The first two were general surgeons and they didn't want to touch me do to my previous surgery and my complicated antamony. I have heterotaxy syndrome with polysplenia...basically I have a lot of things not in the right places. I have suffered for several years with severe pain with eating nausea diarrhea/ constipation..I've lost two jobs..and I just want to have my life back. I stood up and asked my PCP to send me to the Mayo clinic or Dr Hsu in Connecticut since we found out there are no good vascular surgeons in Missouri. Does anyone know how long it takes to get an appointment with the Mayo clinic. My Dr sent my referral off on April 1st two days later I got a Mayo clinic patient number but still no appointment. Just wondering if I should have my Dr refer me to Dr Hsu too?

@kjmo73 - I understand your suffering!
Mayo sounds good- you have been entered in their system. Since you have an unusual anatomy, you’ll probably find the best surgeon there. They can coordinate evaluations by vascular and GI surgeons and the testing needed.

Hi everyone, back in class again! Wanted to let everyone know there is now a formal non-profit dedicated to MALS! Full disclaimer, I am on the Board of Directors. Anyways, if you are interested, take a peek: https://www.malsfoundation.org

I've been told I may have mals but have know clue where to go

Hi @vpauley here is a resource for you. Hope this helps! https://www.malsfoundation.org

I was diagnosed with MALS in 2016, at the age of 61 when my GI doctor ordered a CTA due to the exclusion of other gastrointestinal issues. In 2019 my symptoms grew significantly more problematic. They included chest pain,irregular heartbeat, breathlessness, dizziness, severe epigastric pain that was not necessarily postprandial, loss of appetite, nausea, diarrhea, significant gas and bloating and generally feeling uncomfortable. Another CTA was completed showing severe Celiac artery stenosis suggestive of MALS, Superior mesenteric artery stenosis, FMD of right renal artery and pelvic vascular congestion. A vascular surgeon performed an open laparotomy and lysis of the celiac fibrinous plexus. A CT was performed after surgery due to uncontrollable pain and was normal. Post-surgery I continue to experience significant epigastric pain, postprandial and otherwise, gas, bloating, and diarrhea for 3 1/2 weeks. The pain felt like someone was roughly performing the Heimlich maneuver on me. It also felt like my epigastric area was being pulled apart and often radiated down my right side to the mid back. After numerous trial's of gastric medicine, hydrocodone, and neurontin, I realized the pain was best controlled with Neurontin, indicating the pain is nerve-related. I have had several bouts of regional complex pain syndrome after brachial plexus release surgery and hand and foot fractures. I'm unsure if the pain is caused by residual nerve fibers post-surgery or a CRPS recurrence. My vascular surgeon has basically discharged me at 4 weeks post op, but offered a referral to a pain management doctor for a celiac plexus block. I am concerned with the FMD of the right renal artery and the underlying reason that I have both CACS and FMD. I wish I would have gone to the Mayo Clinic but I have Medicare and Blue Cross Blue Shield of Louisiana.