My Story

I have Chiari Malformation. Chiari Malformation is a neurological disorder where the cerebellum extends into, and beyond, the hole at the bottom of the skull where the brain stem and spinal chord meet. This causes the spinal fluid from being able to flow correctly causing all kinds of symptoms. I was most likely born with it. It just was not diagnosed until I was 38 years old. After the diagnosis, everything made sense.

To tell my story, I can’t just start at the diagnosis and what happened from there, I need to start at the beginning…when the first symptom occurred but no one knew what it was.

When I was 4 or 5 years old, I complained to my mom that it hurt “right here”, pointing at my heart. At that point, my heart was beating so fast and so hard, my mother could hear it clearly from several feet away. I don’t remember this; I’ve just been told it so many times I fell as if I should know it. This started the attempt to figure out what was wrong. I went to so many specialists, had so many EKGs that by the time I was 9-years old, I could probably do the EKG myself. I knew where all the stickers went, I knew how to hook it up, I knew how to start the machine, I knew it all. Unfortunately, that’s all that was known. My heart would just randomly decide to speed up. The doctors couldn’t figure out why, they just knew it did. The highest it ever got was up to about 220 beats per minute. But typically when it sped up, it was to about 130 beats per minute. The doctors tried everything to figure out the cause, but never did. Then they decided I would probably outgrow it, I never did.

When I was 7/8 I lost all feeling in my left hand. It was random…one day it was there, the next not. I could sometimes feel cold, but not often. When I was 31, I got the feeling back slowly. It started with feeling heat and cold. Then the hand started tingling/pins & needles. Then I just randomly have pins/needles in both my hands and feet for the last 4 or so years.

When I was 18 I was diagnosed with migraines. Nothing seemed to help keep them away or stop them once they started. Sleeping in a cold dark room was about the only thing that made them go away.

Around 25, is when I became aware how much bright lights bothered me. I could not be outside without dark sunglasses. Typically while inside I could not stand the lights on if there was sunlight coming in. This just has gotten worse.

At 33, I was diagnosed with spatial (or focal) seizures that were brought on/caused by my migraines. Multiple medications were used to try and alleviate these. Nothing really helped.

By this point, I always had a headache. By always, I mean 24/7.  Right at the base of my neck/skull I constantly hurt. It was one of those things that I finally decided was something I was going to have to live with and although it was a headache, it was a minor one and I didn’t want to have to take medications every day, so I just ignored them. Sometimes the headaches would get bad, I assumed these were just the migraines I was diagnosed with when I was a freshman in college.

Then the beginning of February 2014, we had ice on our patio and I fell and hit my head. This made my constant annoying headache turn into a constant horrible headache. I was taking something for my headache every time I was able. It helped, but didn’t make it go away. So, the beginning of March, about a month later, I made an appointment to go see a doctor. I explained to her about my constant headache and how since I hit my head, it was a constant really bad headache and that even with a concussion, I shouldn’t feel that way. While there, I told her I was also having random lightheaded feelings. It was one of those things where I would just randomly get a head-rush. It would last about 10 seconds or so and then be gone. Because of all these symptoms, the doctor did a huge battery of tests…blood tests, x-rays and a CT-Scan. Less than a week later I received a phone call from my doctor’s office saying they were referring me to a neurologist because of the results of my CT-Scan. The findings of my CT-Scan were “Low-lying cerebellar tonsils are present.” Those six words would turn my life upside down.

On March 13, 2014 I went to the neurologist I was referred to. The neurologist told me that the low-lying tonsils meant I had something called Arnold-Chiari Malformation, or just Chiari Malformation. I asked what that was and he said that cerebellum part of my brain was lower than it should be. I asked what that meant, how it happened, what would happen, and anything else I could think of. He told me it wasn’t a big deal that the only way to fix it was through surgery but that would be way down the line because no one really wants brain surgery. Then he said ‘let’s figure out the pain you are having’. He decided that basically I had whiplash. He gave me exercises to do, told me to take ibprophen and if it wasn’t better in a month to come back and see him and he’d do an MRI and we’d go from there.

So I left, and I did what any person would do…I googled Chiari Malformation. What I found would change my life.

When I started researching, I saw many of the things I had no questions for since I was young, were actually symptoms of Chiari. I also read that one symptom was hearing issues. But I didn’t think I had a hearing issue…I mean, the stuff my ears did, everyone’s did, right? So I called mom and asked her two questions. I asked “do you get to where sometimes your ears sound muffled like there were cups over it or something?” Her answer, “ummm, no.” Hmmm. My next question, “Well, what about a random high pitched squeal that lasts about 30-seconds or so, sometimes.” Her answer, “No. Why, do you have these?” I told her yes and she asked how long I had those, I said my whole life, I could not remember not ever having that. I also discovered there was no cure, it could be a lot worse, and the only way to truly diagnose it was through an MRI.

I went back to the neurologist on April 15 still in pain and with lots of questions. The doctor said he was going to send me to a pain specialist since I was still in pain. I asked about the MRI and he said he didn’t think it was necessary at that point. I asked if all my symptoms could be related to the Chiari since the research I had done showed those were all symptoms. He told me no, that he did not think the Chiari was an issue at all. He said he’d refer me to a pain specialist and if I was still in pain in a month, to come back and see him.

I left there and I again researched. This time I was researching a doctor that might know something about Chiari. I found two doctors in the area that knew something; one was a pediatric doctor, the other was not. So I took a chance and made an appointment with the neurosurgeon.

On April 29, I went to visit the neurosurgeon. He had all my test results and then he sat down and talked with me. He said yes, it sounded like I had Chiari Malformation but he needed to do an MRI to confirm it. He answered all of my questions, he gave me more information that I had found in my research, and he was very patient. He scheduled the MRI for as soon as he was able and then had me back in his office within three days of the MRI. On May 16, I again met with Dr. Glenn Harper and he said I for sure had Chiari Malformation. He explained again there was no cure. He said he did believe I was a good candidate for decompression surgery and that he believed the surgery would be a life-changing event. He was right in so many ways. When I scheduled my surgery, my only stipulation was that it could not happen until after June 16. His office was surprised and asked why then. I said I was a teacher and we did not finish until June 6 and then I had a trip planned and we were taking 16 students and parents to a workshop at Disney World and I would not be back until the 12^th. I said as important as this may be, I’ve lived with it for almost 39 years, I can go see Mickey Mouse first. And so, my surgery was scheduled for June 19, 2014.