So, if you’re interested, sit back and relax because this is going to be very wordy and most likely, intense. If you’re in the mood for happy, warm and fuzzy or holiday related, turn back now! 

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From the time I was a little girl, I have always suffered from bad migraine headaches. As this is nothing unusual, plus my father suffers from them, my family never thought anything of it and I never went to a doctor specifically for them. In 2004, I started having heart problems. I would wake up from sleeping with a resting heart rate of almost 200 beats per minute. I had heart palpitations and I would sporadically have those instances where my heart would just race. Several doctors wrote it off as stress; granted, I was working full-time, in college full-time and doing my internship. I was a busy girl. But I didn’t feel stressed! Finally, I saw a doctor who said to just come in whenever it happens. Stop what I’m doing and get there. So I did.

He was also convinced it was stress and anxiety and gave me Xanax in the office. My heart rate didn’t slow. He gave me more. It still didn’t slow down. He checked and saw the palpitations and irregularity on my EKG and sent me by ambulance to the hospital. I was discharged by a doctor stating I was a “typical woman with anxiety and needed to see a psychiatrist”. The only reason I remember this memory fondly is because my little 5’1″ mom got in this doctor’s face and argued with him. It didn’t help, but it made me feel loved and supported (and it was really cute to see my mom be so protective).

Flash forward to March 2006 when I get in a moderately bad car accident. I stopped for an ambulance, but the guy behind me apparently didn’t hear the loud sirens. He slammed into the back up my SUV so hard he totaled his car, it threw my gear shift into park and opened the cover to my sunroof. I got out of the car and felt my back crack all the way down. Needless to say, I ended up at an emergency quick care and later sent on to a chiropractor with very bad whiplash. After weeks of seeing a chiropractor and not getting any better, I complained to him that I was just having so many problems with weakness in my neck, right arm and shoulder. He decided to do an MRI stating I should be improving and he could see I was actually becoming worse. I had it done on a Friday and he called me that night asking me to come in Monday morning. That weekend, I lost complete feeling in my right arm and hand; only for several minutes, but long enough to know something was wrong.

Monday came along and I went in to see my chiropractor.  He asked me how I was to which I told him what happened over the weekend. The next several minutes of our conversation become a blur after he tells me I have two large cysts in my spinal cord and I need to see a neurosurgeon. I’m quite sure he explained things and answered my questions, but I have no idea what happened next. All this from that car accident? 

I didn’t grasp the gravity of what was happening.

Weeks went by, more MRI’s and I finally got in to see my first neurosurgeon. He saw my scans and literally the first words out of his mouth were “Holy shit I have never seen any that big before”. He goes on to explain that I have a congenital malformation of my brain called Chiari Malformation Type I causing my brain to be too large for my skull and thus, blocking the base where my spinal cord connects to my brain. As a result, fluid built up in my spinal cord causing my secondary condition, Syringomyelia, which is a fancy and scary word for having a syrinx (fluid-filled cyst) inside my spinal cord. I was lucky enough to have two of these bad boys. He said I would need to see his partner who is a specialist in these disorders and I would need to have brain surgery. I’m sorry, did you just say brain surgery? I’m still stuck on congenital malformation! All I remember is going to out to the parking lot, sitting in my car and crying to my mom on the phone scared that I could die or become paralyzed which were both obvious possibilities. I was going to have BRAIN SURGERY! What the fuck is happening to my life?

I go see the specialist and he is wonderful. He explains everything so well and puts me at ease. He also goes on to say that my heart problems were a symptom of my disease and most likely I would have had a heart attack if I hadn’t been in the car accident. Apparently, while this congenital defect and secondary illness are both fairly common, they masquerade as other things. Not enough doctors are familiar enough with them to consider that my heart problems were a result of a neurological condition.

In just two months since the accident, I was already declining as it had exacerbated my symptoms. I was in a lot of pain, slurring my speech and tripping and falling often. He wanted to schedule the decompression surgery right away. I will spare you the details, but basically in this surgery, he enlarged the base of my skull by removing some of the skull itself as well as C-1 and portions of C-2 and replacing with grafts.

It was intense to say the very least.

No one can prepare you for this.

I knew I would be on bed-rest for 12 weeks, but I had no idea I would have to have a walker for a while and not even be able to do the simplest of things. I had no idea the intense pain that would last for 6-7 weeks with little relief. None of us knew if the surgery would even help. There is no cure for Chiari Malformation or Syringomyelia. The reason to have the surgery is to attempt to prevent the syrinxes from becoming larger, causing more nerve damage, thus preventing many other problems and even death.

I can tell you that it did help many of my symptoms; the slurred speech, my balance, the constant ringing in my ears I have had since I was a child and even my heart palpitations and irregularities. However, it made my migraines much worse and more often. The nerve damage on my right side can’t be repaired so I still have problems with weakness in my shoulder, arm and hand. I have inflammation throughout my body which sometimes causes a lot of joint pain. I have days where I am just so exhausted.

I’m 37 years old and I sound like I’m 80. Some days I feel like it and those are the days I disappear. The pain gets the better of me and it’s all I can do to complete the basic most necessary tasks of the day.

These are invisible illnesses.

On the outside, I look fine. I smile and carry on and you’d never know. And that is what sometimes makes this so much harder.

This is not something you can just easily share with someone. The look on their face, the sound in their voice, they become speechless. I don’t blame them. What do you say? So, I just disappear and make up an excuse. What I want to say is….

I am sick. I suffer from a chronic neurological illness. I will never get better unless a cure is discovered.

Sometimes I disappear. I have to rest my mind and more importantly, my body.

I know there is nothing you can do. I don’t expect anything or ask any more than your gracious understanding.

There was a deep need inside me to share this with all of you. (It has also been “a bad week”.) Sharing is cathartic and therapeutic and provides me an outlet. It also helps spread education and awareness. Plus this opens the door to share the stories I have about seeing neurologists here in Germany! Those you will want to stick around for!

The month of September is our national awareness month and we are represented by a purple ribbon. Here are a few great organizations out there who are leading the way in research, education, awareness and support:

For those of you that made it this far, from the bottom of my heart, thank you.

Thank you for listening and making your way through this post. I know it wasn’t easy.