Hello my name is Laura, I have had health issues all my life. If you ask my mom it started in utero. I spent a lot of my childhood in and out of hospitals. If it wasn’t an organ that needed to be removed it was a kidney stone. I was finally diagnosed with MALS at the age of 16. The funny thing about my story is the fact that I likely would’ve never been diagnosed without a news article done on a fellow MALS patient that I got from my aunt. She figured it was shot in the dark and it was. I was one of the first people in my state to even be tested for MALS at the time. Which resulted in some pretty inaccurate test results that somehow still showed my MALS. I went to Chicago to be part of a MALS study. At the time there were a handful of surgeons in the states who treated MALS. There were even fewer who operated on pediatric patients. That made it so I had to travel to be treated. I went even though my mom and I both had a feeling we’d be sent home empty-handed. The doctors running the study at the time both agreed I was likely misdiagnosed with MALS. I wasn’t severely underweight and my symptoms were considered mild. They sent me for testing to double-check my MALS diagnosis even though they thought I was a false positive. I can still remember how big their eyes got when they watched my testing. Not only did I have MALS but I had a very severe compression. One of the worst they had ever seen. When we went in for my surgery the next day the doctor looked at me and apologized. They had never thought a MALS patient could look like me. That they could just look completely healthy while having something severely wrong. The next day I had surgery. Which was both a blessing and a curse. I felt awful post-op. My symptoms went into overdrive for the first week. I had some symptom relief when I finally flew home and I was extremely hopeful that I had finally found out what was wrong with me. I was also hoping that I would be able to finally have a normal teenage life. Unfortunately, that wasn’t the case.
3 months post-op my symptoms were all back with a vengeance. I was worse off than when I went in for surgery. We called the doctor and he said that sometimes that happens. Surgery wasn’t a guarantee but it was worth a try were his exact words. My mom and I were devastated. I went from missing school a little bit to missing weeks at a time. It eventually got to the point that I failed my freshman year of high school within the first semester because of how many days I had missed. I switched to online school and just accepted that this was my new normal. My mom also blamed herself for how I felt. She felt as though she didn’t advocate for me enough and that maybe surgery had been a mistake. It wasn’t until I was 19 and mostly bedridden that I decided enough was enough. I just wanted to feel better and I didn’t care what I had to do to make that happen. My primary care sent us to a pain management clinic and recommended I go to receive nerve blocks. We went to a nerve specialist for a celiac plexus nerve block which at the time was an incredibly uncommon treatment unless you had pancreatic cancer. Even more so for a young adult to receive them for what they thought was a simple stomach ache. So they weren’t sure how I’d react to the blocks. I had 4 separate blocks done, 1 through the back and 3 down the throat with a scope and ultrasound. During my first block, he noticed something wrong with my Superior Mesenteric Artery. He sent the notes to Vascular and they kinda just shrugged him off. Then they did my last nerve block. This time he made sure to go the extra mile to really look at my SMA. He sent the scans off to vascular and they confirmed what he was suspicious of. Within a week I was in front of a vascular doctor and a room full of students. Which is never a good sign when your room has over 12 doctors in it. Especially when you think you are going to have a normal appointment. Not only had my MALS come back but I also had SMAS (Superior Mesenteric Artery Syndrome), NCS (Nutcracker Syndrome), Pelvic Congestion Syndrome (PCS), and MTS (May Thurner Syndrome).
When I got that news I almost cried tears of joy. Finally, there was a reason for all my aches and pains. I wasn’t making it all up as so many doctors had told me. The moment they told me I had 5 rare vascular compressions my world just felt so much brighter. Which may sound odd. But being undiagnosed for so long and then being told you were “fixed” lead to a lot of dark nights when the symptoms were at their worst. You start to second-guess your own body and your sanity. After doing another round of vascular testing I was signed up for the first surgery of its kind to be performed in the United States. When I was diagnosed I was told I was a medical impossibility but yet I’m here.
It’s been almost 8 years since I had my surgery. The likelihood of symptom relief was extremely low and I went in knowing that. My vascular system needed to be fixed. Deciding not to fix it wouldn’t have just impacted my quality of life but also the length of my life. I took another leap of faith knowing that I may not feel better. I could’ve even come out feeling worse than I did prior to surgery. But I had to take that risk. I will always be incredibly grateful to my surgeon for taking that leap with me. She was there for me every step of the way and recovery was rough. She stayed at the hospital with me every day just to make sure that anything I needed was taken care of. It took me almost a year to finally achieve a normal GI tract. Which at 20 years old happened for the first time in my life.
I wish that was the end of my story but it's not. During the pandemic, my symptoms came back in full force. I felt like I was going crazy when I first started having symptoms again. My brain just couldn’t accept that I was once again going through my body sabotaging itself. After being in denial for a few months I told my mom that it was time to go back to a vascular surgeon. The one I saw 8 years ago had moved on but I was lucky enough to see one of her students. I don’t know where I'd be without those women advocating for my care. This new doctor looked at all my health records prior to my appointment and was prepared for the long haul of testing I was about to go through. I didn’t want to be there. Every part of my body felt like it was breaking down and my mental health was going along with it. I knew what was coming, well I thought I did. I figured I’d have another vascular surgery and be on my way.. Well, that's not what happened. During my angio to retest for Nutcracker Syndrome (NCS) my vein collapsed and they had to place an emergency stent. My body utterly rejected it. I was allergic to almost everything the stent was made out of and my body was literally trying to push it out of my vein. Trying to go through this gauntlet during covid was an experience, to say the least. I ended up being referred to the Transplant Team. I had hoped to donate my left kidney and just be done with the whole thing. But I wasn’t able to do so because of my kidney stone history. I found out I had no vascular options for my NCS because the stent decimating my vein. So I was scheduled for surgery. When I went for my pre-op I knew I was getting my MALS, SMAS, and NCS treated for the second time. What I didn’t know was that my Inferior Vena Cava was now compromised as well. It had been put under too much strain with the other compressions and needed to be addressed as well. So on June 23, 2021, I had a left kidney autotransplant, left renal vein transposition, scar tissue stripped from my celiac, Strong’s Procedure done for my SMAS, and my Inferior Vena Cava was completely reconstructed.
I will always have some health issues because of how long it took me to get diagnosed as well as other autoimmune diseases. I don’t want someone else to have to wait as long as I did to finally be believed, heard, and treated. I felt like I was screaming for help but no one was listening and that needs to stop. Which is why I became part of this organization. So that I can be part of a positive change in the MALS community while also being a part of improving the medical community as a whole for every rare zebra and unicorn out there.
