My Chiari Diagnosis Story

In 2012 everything changed. With a simple phone call and two words I had never heard of, or could spell. Chiari Malformation and Syringomyeila.

Ok fine that's three words if you count Chiari and Malformation. This post is going to be what happened to get to a diagnosis and what it felt like during that time. Think of this as a part one if you will.

Let's go in order.

I've had headaches ever since I can remember. I'm talking like two years old. These headaches have always felt like a halo starting at the back of my head near my neck and circled around to my temples. I remember taking A LOT of Tylenol as a kid, all throughout my teen years, and into adulthood. I had other strange things start to happen as I got a little older as well. By the time I was four, loud noises were out, and I would stuff napkins in my ears to make sure I could enjoy the show or movie. A few years later I said something to my mom about the words popping off the page in the book I was reading like it was in 3D. I got a confused look back from her. I continued to say "yeah you know when you put your hand on the page and the words float between your fingers?" again confused face but this time with a dash of concern. Then the learning disabilities where diagnosed, and more strange things started being noted; like how I was always sick and my immune system didn't seem all that strong. Then, there was PE in like 5th grade when I was not just uncoordinated, but I seemed to get heat stoke even on colder days in Huntington Beach CA (it really doesn't get hot there). And this whole time was peppered with lots of headaches and lots of pain. I had terrible leg pains that I was told were "just from growing" which is funny in its own right as I grew to a whopping 5ft 1in. I have random times where my heart will race out of nowhere, like sitting on the sofa, walking a few steps, or just standing up from laying down. ALL of this was told to my pediatrician over many different visits. Some small tests here and there in the office were done to find that my heart is "fine" and it really doesn't look like it could be anything else so..... "it's all in her head."

Fast forward to the age of 19. I've fallen in love with Ren, its looking like we'll be getting married in the next year or so, and that means I will no longer be under my parents insurance. Time to see if i can get some tests done for the stupid headaches I've had my WHOLE stinking life. I finally was sent to a neurologist. She sees me after I've had an MRI and tells me and Ren that this looks and sounds like I am experiencing the precursors to Multiple Sclerosis. The neurologist informs me that I currently have no lesions on my brain that I would need to get a spinal tap to see if they can diagnose it that way. At this point, I'm 19, I've been told I may have MS, and I'm about to get married. Ummmmmmmmmm yeahhhhhhhhhh. I tell Ren to get the hell out of this relationship as I am likely to become a vegetable one day. He responds with, "Well, then I'll love my vegetable" and I still cry when I think about that to this day.

Not surprisingly as a 19 year old I kind of went with the: "I'd rather not know" approach, and honestly, I just never went back for more testing. Why the F would I?! If that shit was real and I had MS, I would know one day and deal with it then. That was my thinking... till it wasn't.

Having good friends.

Fast forward to 2012. I am 24 and I have for the first time in my life really really good friends. They are truly family and still a huge part of my life. I'm hanging out with them and have one of my what I call "brain pops". I got them often. Ren was used to them after 3 years of marriage, and I would hide them if I could when I was out in public. A brain pop happened when I would turn my head to the side too fast and it would feel like a balloon-pop behind my ear. I would hurt bad for a moment and then it would stop. But the strangest part is that that area behind my ear would get hot to the touch. (we still don't totally know what those were, but my neurosurgeon thinks maybe what would happen is my Chiari herniation would shift as I turned my head letting a rush of CSF to my brain. It's ok if you don't understand that last sentence at all, but anyone with CM does.) This was the straw that broke the camels back. My friends could handle the ears ringing and loss of hearing. They could even understand the "I have to cancel due to a headache." but this this was too far. My wonderful friends looked at me with tears in their eyes and said maybe its time to get tested again. I, like any good friend, replied back with"If it'll shut you up, you got it!" So the next time I saw my PCP I told her about the weird stuff blah blah blah, thinking she would send to get an MRI and that would be that. Case closed.

Not quite...

I got the call.

On a Monday I had an MRI and an MRA. It was long. I was nervous. I thought it was going to land me back in a neurologists' office where I would once again tell them: "No thank you, I don't care." and I would simply bounce along my merry way until I couldn't. But that's not what happened.

On Wednesday I was about to leave work and saw I had a voice message. I listened to my doctor explain this wasn't normal protocol, but I had something called Chiari Malformation and Syringomyelia. It was dangerous and I needed to find a neurosurgeon ASAP. I fell to the floor and handed the phone to my coworker WHO HAPPENED TO BE ONE OF THE FRIENDS THAT MADE ME GET THIS TEST because I couldn't compute, or how to spell what I had. He did. He wrote it on a cardboard box in the back of our office, and from there nothing was ever the same.

From the Monday I had the MRI to brain surgery took 4 short weeks. I had never been in the hospital. Never broken a toe or anything. The first time I'm admitted to a hospital is for freaking brain surgery. What can I say? I've always been an over achiever.

Writing this I am aware it is lacking in my emotions as I went through everything. To be honest, during this time I felt nothing and everything at the same time. I've always had a knack for being really calm in stressful situations. (it's the years of trauma... thanks!) I am great at being able to put my head down and get it done, and in that 4 week time I had A LOT to do. I had to find a doctor that knew what the hell Chiari was and had successfully completed more than 1 decompression surgery in their career. I had to get everything through insurance handled. It was a full time freaking job getting everything together and finding the right surgeon for me. I also had to figure out some sort of idea of what kind of surgery was best for me because this condition is so unknown! So, yeah, I not super emotional during this time. At times, I would bubble up and spill out, and I would cry, and be scared shitless, and be so worried that nothing was ever going to be ok again.

In some ways I was right in that period, but I couldn't even conceptualize any of that in that time period. I just needed to keep myself together to get to surgery, and I would worry about the rest of that stuff after it was done and I was back on my feet.

Emotions when you are walking from knowing something is off with your health to getting diagnosed is just one leg of the journey. That years-long journey felt hopeless at times. I had been walking that path since childhood, and all I heard was "it's all in your head." I felt like: "Why am I fighting if no one believes me?" So I gave up fighting until friends came along and pushed me back into the ring. Next came the emotions from diagnosis to surgery. That was just: "Hold your shit together Lacey! Get back on the phone with your medical group, get this form in to the insurance, make sure work is set, and you have all that paper work in too." It was a fucking gauntlet. Heading to surgery is a race you want to finish to just be done with all the work, but you don't want to cross that finish line because it's actual BRAIN SURGERY. It was one of the most surreal times in my life.

I did cross the finish line. On June 18th 2012 I had decompression surgery for my Chiari Malformation and Syringomyelia. "I really like being alive" has become one of my sayings now. It's really true! I freaking love being alive.