I returned to work the 15th of December excited and grateful to be able to join my co-workers and return to the job and career that I love. I know that not all of us Chiarians get that chance and I in no way wanted to take my chance for granted. My first two shifts were insanely crazy and I was relieved that both days I held my own and left work feeling great, something that would not have happened before my surgery. Shift three and I knew I was in trouble. I almost collapsed in the ER and my heart rate and blood pressure went bonkers. After caring for patients for only three shifts I found myself the patient again. After every test imaginable no one had an answer for my odd episode and I was sent home and returned to work again several days later. Christmas went by and was uneventful, I was tired but I was only 11 weeks from brain surgery and since I had no headache or sensation issues everyone chalked it up to me being out of shape and trying to get back into the swing of things. In January I saw Dr. Pollack again and again I was given rave reviews and the "Picture Perfect" label for my improvements and recovery. I also met my new neurologist who altered a couple of medications and sent me on my way. Both appointments went great and gave me a lot of hope for my course to stay the same. Dr. Pollack cleared me for exercise and training and I was excited to get back to my normal life. Although there were some stressors in my life I kept plugging along, convinced that I was going to beat the odds and that very soon I was going to be able to put Chiari behind me. Ummm yeah, I just typed that and you just read that. Even though for months I have been learning of boundaries and changes I was going to have to make in my life, even though I have been able to recite at the drop of a hat the limitations and sacrifices I was going to have to learn to deal with, even though no one around me expected me to beat the odds, I had "known all along that I would". I would tell someone that I knew how this was going to change my life, but I don't think I ever truly believed any of it or accepted any of it. Yes Amy, even though you tried so hard to mentor me and help me understand what to expect, I still thought I was somehow going to be the one that outsmarted Chiari and it's grasp you explained to me that it would have. Registration started for the Warrior Dash and as some of you will recall, I was supposed to run it last year and my diagnosis trampled that plan. I checked out the course, filled out all the registration information, and started exercise slowly. I ran into Dr. Pollack on the stairs at work one day and she was thrilled with the fact that I was running on the stairs, so I explain to her my activities and my plans and you could have knocked me over with a feather when she said "Are you insane?!?!!" Ummm, ouch. So I go home, sit down with all my research, all my well wishes from loved ones that I received during and after surgery, all my new friends I had made on the computer at the touch of a button, and I lost it. In the middle of a pile of papers and cards with my laptop just inches away, I completely melted down for the first time since my surgery. I then spent day in and day out trying to wrap my head around all the changes that I was going to have to permanently make and all of the activities that I was never going to get to do. Stress inside of my head, stress in my life that I had been trying to ignore and it would fix itself, stress because one of the new medications was making me extremely ill, stress because every 11-11 shift I attempted to complete since I had returned to work had landed me in the ER and all of a sudden I had this crazy headache that would not go away. It was time to make some massive changes. I begrudgingly gave up my 11-11 shift, knowing that my brain was just THAT sensitive and started figuring out other ways to quiet life down. Unfortunately, Chiari had other ideas.
A week into the headache I knew I was in trouble and I called neurology to get an appointment as soon as possible. A week and a half into the headache and I could barely get to work and I was not functioning anywhere near my baseline and I called neurosurgery. Two hours after my phone call to neurology I make two phone calls that I still to this day do not remember making. I called a coworker and one of my best friends and told her I could not see straight and I needed help, and I called my supervisor and told her I could not see straight and needed help. By the time someone was able to get to me I was found on the floor of a small report room with no recollection of how I got there or the phone calls that I had made... and so began my month long jail term at KU Med. A month of medications and alternative treatments, a month of burying my head under my pillow because nothing my medical team threw at me would even begin to dull the throbbing band of pain that circled my head. Phone calls to MD Anderson, phone calls to Mayo, protocol after protocol was thrown at me with no improvement. After 28 days, an entire month, the neurology team at KU Med threw their hands in the air, admitted that they were stumped, and sent me home with referrals to specialists all over the country.... with my headache no better than it had been 28 days before. My MRI was beautiful and Dr. Pollack again blessed me with her "Picture Perfect Patient" label despite the fact that I was sure I was dying. The working conclusion was that my brain was shifting into its new position and that for some reason it just did not like the position it was in at the time but that everyone felt like in time it would level out and the headache would subside. I went home trying to understand it all and at a time where my life should have been tail-spinning, I woke up one morning just a few days later with the headache gone. Completely gone. A week later and I returned to work almost expecting the headache to come back. A week into work and no headache. A follow up appointment with Dr. Pollack and she becomes convinced that stress is what has caused this odd diversion from her model path and that since most of the stress had been recently removed from my life I would continue being perfect once again.. Ummm, sure, if you say so crazy Russian lady!
A week later I meet my new neurology team at Mid America Neuroscience Institute and the headache guru that quickly became my favorite person on Earth... although it took a bit of time for us to determine who was crazy in this mix of expert doctor, expert patient, and the devil called Chiari. As the meeting progresses and Dr. Winegarner asks question after question and asks me to perform little trick after little trick. With each question he throws a bouncy ball about the size of a softball at me and tells me to throw it back. Question, ball bounces to me. Answer, ball is returned to him. Back and forth and back and forth with different instructions such as throw it with your opposite hand, catch it standing on one foot. We discuss my journey that led me to him, all the while tossing this ball all around the room. "What are your expectations of your visit today?" The ball bounces off the counter and into my hands and quickly I think maybe since I have a new team with new ideas I might not have to accept that I won't beat Chiari afterall. "So that you guys can fix me so that I can go back to my normal life." The ball bounces back to Dr. Winegarner "You mean so that you can discover your new life?" The ball bounces on the ground and back into his hands, never coming towards me. "Nope, my normal life, my life before this stupid surgery." SMACK! Super hard red bouncy ball pounds squarely into my stomach, doubling me over and taking me off guard. Stunned, I stand back up, blinking my eyes at him and searching my mind for the right words. Did this new doctor who was supposed to help me just launch a damn ball at me??? I wanted to ask him who did he think he was but I couldn't find the words. "Who do you think you are?" Not my voice, but this strange new doctor's. "You are not invincible, you are not self healing, and you cannot reconstruct your bones, push your spinal cord back together, and just forget all of this happened." Ummm, why not??!?!? Ok, so by this point I knew why not, but I either had to suck it up and play cool or break down and cry and I was afraid of what else he might launch at me if I started bawling like a baby so I bit my lip, crawled back up on the exam table, and quietly asked him what was next for me. "Getting you back to life is what is next, just not your old life. We are going to find your new life." And so began the long discussion of his detailed plan to treat me and my brain that is too big for my head. So, two weeks after that appointment, four weeks after I was released from being held hostage at KU Med, I am back on track, feeling better than I have felt in YEARS, and finding life again. I am back on my horses, back climbing on the rock, and easing back into working out and discovering running. Dr. Pollack still calls me her Picture Perfect Patient and Dr. Winegarner has named me Dr. Pollack's Princess, and me, I'm just glad I'm not green ;) !
Headaches will always be part of it, but hopefully with the right trials and treatment combinations we can minimize those. Between the surgery and with the new medications, the pins and needles are very minimal, my balance is coming back, the rocking is gone, and for once in 10 years, I notice the days that I don't feel well instead of being shocked by the days that I do.