This year has been nothing short of madness, as I’m sure you can agree. Everything that’s happened in the past six months since my last update (check-up at Cleveland Clinic) has me feeling like I’ve been dropped into another life. There have been countless changes, so many new challenges to face, and seemingly endless craziness. But I know I am not alone!
When the pandemic hit, I left my apartment in New York City to quarantine with my family in Upstate NY before things got really bad in the city. I feel so fortunate that I was able to get out in time and ride it out at my parent’s house. I’ve been out here living the small town life ever since!
Although, I am finally returning to the city this week after four long months away! I can’t even believe I’ve been gone for four months! Now, my boyfriend and I and our roommate are moving apartments, so I need to return to help. It’ll definitely be a busy first few weeks there, but I’m so looking forward to moving into our new place and getting settled again.
However…in these four months that I’ve been at home, I’ve been dealing with some difficult new developments with my health. Hold on, cause this update is a doozy.
For the past year, I’ve deen experiencing episodic stomach pain. It can get so bad that it’s hard to eat anything. Sometimes, even drinking water intensifies the pain. To make matters worse, nothing seems to provide any relief. I’ve tried Tums, acid reflux medication, PPI’s, digestive enzymes, you name it. I even drank aloe vera juice because I was that desperate for something to work!
But nothing helped, and I still experienced bouts of this debilitating stomach pain. The weirdest part? It hurt every night and still hurts every night. The constant pain and worsening pain with eating only happens with what I call “episodes,” which have lasted anywhere from a few days to a few weeks. In my last episode–lasting all of May–I could hardly eat anything more than a liquid diet and lost about five pounds. Honestly, this was scary and miserable. I love food!!!
In October/November of 2019, I went to a GI doctor for a full workup. This included an endoscopy with biopsies. My stomach pain got way worse after this procedure, and I swear, I thought I had a hole in my stomach. I was about to call their office back and be like, what did you do?! However, the endoscopy showed nothing, my biopsies came back normal, and the doctor threw me a GERD diagnosis and some PPIs.
But like I said earlier, that didn’t work.
So around the time I left New York City in early March, my stomachaches were completely out of control. Every night, I woke up wanting to puke. I’d spend half of the night on the couch, tossing and turning in unrelenting pain and trying not to vomit. You can probably imagine how exhausted this made me. My POTS symptoms got worse. I felt very ill overall.
Once I got home with my parents, I knew I had to push my doctors to do further testing. Something just wasn’t right. I knew it in my gut. Heh.
After a breath H pylori test came back negative, as well as other tests for bacterial and parasitic infections, I contacted my Cleveland provider in neurology. Right away, he thought my stomach pain could be something else: Median Arcuate Ligament Syndrome, or MALS. He’d only ordered tests for this a couple of times, but he felt confident that this could be my answer.
So, I traveled with my dad and my boyfriend to Cleveland to get an ultrasound of the mesenteric arteries. The results showed no compression, however, my celiac artery was tortuous. When I got the call with these results, I immediately had a severe panic attack when I hung up. I had no idea what that meant, but it sounded so scary (and still does, quite honestly). For a while, I thought I was going to die because of it. Bottom line: I needed to consult with a vascular specialist ASAP to determine the severity.
After meeting with the vascular doctor, he didn’t believe that I had MALS. When I asked what could explain my kinked artery, he simply said that some people have different anatomies, but I shouldn’t worry about it. I wasn’t fully convinced because of my pain, but he insisted. He referred me to a GI doctor at Cleveland for the next step, believing my cause of pain to be GI-related.
After the vascular appointment, my dad, my boyfriend, and I were so relieved that my artery was okay that we went out to celebrate–social distancing style. We went to an outdoor Mexican place and got margaritas and did a cheers to the good news! I can’t even tell you how relieved and happy I was–and that wasn’t just the tequila talking!
Sadly, the celebration didn’t last long though.
The very next morning I got another call from the vascular doctor. After reviewing my case more overnight, he now wanted to run a CTA (CT Angiogram). He thought that maybe the artery tore at one point and healed in a twisted position. The scan would rule this out by looking at the quality of the blood vessel’s walls.
I agreed to the test (I wanted one to begin with) and scheduled it for the next day. I remember thinking, but I just celebrated being okay, and now I’m not anymore?!
It’s really hard to be in a position where you’re scared about your health and wellbeing, told you’re going to be okay, and then learn that that may not be true anymore. If you also suffer with your health, you know what I mean!
So, with a brave face and lots of steroids in my system, I got my CTA done. I’m happy to report that I had no allergic reaction to the contrast dye (thanks, steroids!).
A few days later, I got the call from my vascular doctor with my test results. Interestingly enough, while no compression showed up on the ultrasound, the CTA revealed 30% compression of the celiac artery. I was diagnosed with mild celiac artery compression syndrome (also known as MALS) and referred to pain management at Cleveland Clinic for further steps.
While I have an answer now as to why I’ve had episodic stomach pain, I’m kind of stuck at an impasse. I need to find a vascular surgeon who’s knowledgeable on MALS and has treated it more than just a handful of times. I’m not sure I can find that at Cleveland, as no one seems to want to step up and be the leader of my care. I just keep getting bounced from person to person, department to department.
So far, I have read good things about Dr. Hsu in Connecticut. I think I’ll be looking into how I can get a consultation with him and determine if I need surgery now, or if I should wait since the compression is only 30% right now and my pain isn’t constant.
Please, if you’re reading this and have experience with MALS, let me know who you’ve seen in the comments below! I would SO appreciate any advice!!!
Phew! That was a long health update, but that’s where I’m at in life and in my healing journey.
When I first learned about this diagnosis, honestly, I had a lot of emotions. I still do because I’m still processing. I think a lot about the future and what that will look like for me. I mourn for the life I had a year ago when I had finally learned of my POTS diagnosis, and I was finally getting some relief from my symptoms.
However, I know I am not alone, and that is a comfort. Know that you are not alone too. Remember that you are stronger than whatever battle you must face today and tomorrow. I remind myself of this every day now. I am strong and resilient and I will get through this, and I have faith that I will be better on the other side of it all.
I have a lot of learning and researching to do about MALS. That’s life with chronic illness: learning everything you can to help yourself and then trying it until you find something that works. It isn’t easy, and it’s not necessarily fun, but it’s essential to living well with chronic illness and cultivating a life you still love despite your conditions. It’s all about your attitude!
I’ll write another health update when more has happened, but for now, I’ll close this one. It’s time to get ready to go back to the city, and for right now, I’m focusing on how excited I am for that!
Sending love to you all and thanks for following my journey. A quick reminder again: If you or someone you know has MALS, please get in touch if you feel comfortable sharing your experience with me!
XO – Laurie