National MALS Awareness Day

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It's been a while since I've written on here - I've been really busy! But I figured that since today is National MALS Awareness Day, that I would do a brief post.

As many of you know, over the past three years I have faced two really overpowering and consuming conditions known as positional Superior Mesenteric Artery Syndrome (SMAS) and neurogenic Median  Arcuate Ligament Syndrome (MALS). Yes - they are as awful and intense as they sound. They took away my ability to eat and drink. It was so bad that I couldn't even keep down a sip of water. They made me become severely malnourished and weak and I fainted a lot. My feeding tube became my lifeline, my only source of nutrition. And the pain that accompanied all of that was horrible. I ended up having to have THREE major abdominal surgeries to get rid of these compression syndromes. It definitely wasn't fun. And the recoveries that came with each surgery were so long and frustrating.

My last surgery was in March 2020, with Dr. John K Petty who was able to get rid of my neurogenic MALS completely. He told me exactly what he saw, and how he was able to release the nerves that were compressing my celiac artery causing the immense pain and discomfort I had been experiencing. Yes, it's complex, but the point is that he got rid of it!!!!!!! (This procedure was entirely for MALS; my two prior surgeries addressed my SMAS). Surgery recovery was brutal (so skip the rest of this paragraph if you don't want to read). I was hospitalized for over three weeks and it was so hard. The pain and nausea I felt was so intense. I was throwing up around 6 liters of bile a day and I couldn't keep down food or even liquids for weeks. I was so frustrated because Dr. Petty had told me that he had fixed everything - and I kept thinking "If he fixed everything, why am I not better? Why can't I keep down food yet?" This was my third major surgery and I was just sick and tired of feeling horrible. I'm sure many of you can understand that - we all just want a quick fix from this awful compression syndrome and the effects from it. 

But, recovery is a process. And I had to literally tell myself that every minute. That every minute away from my surgery was a step towards feeling good again. And I got there. 11 months later, I am feeling great. And it is so rewarding. 

People say that MALS is "rare" but over the past few years we have met and heard of so many that  have experienced the terrible effects of it. The damage and pain this illness causes is honestly underestimated. We know so many people struggling because of this horrible condition. We have met many who have doctors that have resisted further testing and treatment for MALS. I had the neurogenic form of MALS, which can be undetectable in certain tests - making diagnosing difficult. We have met many whose doctors are so narrow-minded and egotistical that they don't want to learn new diagnostic and surgical methods. The point is, that 1) MALS is not as rare as people say, and 2) MALS is no joke. It can seriously take over your life and turn it upside down.  I know many of you can understand that. And to those of you fighting MALS and/or its lasting effects, keep fighting and stay hopeful. You got this!


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