The Day Has Finally Arrived....

The day has finally arrived. We are heading to The Chiari Institute. It has been a long four months. Thanks to my sister and a lot of hard work on my part, I am finally going. No healthcare provider helped me. You heard right, not one healthcare provider helped one bit. I left the hospital with a handout on headaches. My sister walked me through what appointments I needed. So immediately, my mom and Justin started making the appointments. Within three weeks, I was in to see the urologist for the initial visit. On May 27th, I had the urodynamics testing that showed neurogenic bladder. Neurogenic bladder is what people with spinal cord injury get. The report from the urologist states that he recommends a full neurological workup. On May 28th, I saw the neurologist for the first time. You all read about that horrendous event. Luckily there has been a 100% urnaround there. Then I saw the speech therapist. She was specialized in neuro cases and was so excited to have someone that had something other than a stoke. She was my first true hope that we were on the right track. She did her work up and a computer work up and stated that it was "of a cerebellar origin". Then a few days later we picked up my medical records. That was when I was so appalled that my MRI actually showed "low-lying cerebellar tonsils" when I was told by my dr's that I did not. Now, keep in mind, I had been making all of these appointments without referrals. Luckily, my insurance does not require referrals or I would be about a year or two back from where I am today. When I got my records, the letter from the speech therapist, and the urologist report, I sent all my records to NY. I had requested that all my records be sent from the hospital but they were never received in NY from the hospital. So I sent them myself a month later. Also keep in mind, this whole time, I had debilitating migraines. Migraines that have you in bed with your head covered. The kind that if you move, you throw up and no medication for relief. So it is pretty amazing that this all got done as fast as it did. Once, New York got my paperwork, they were pretty fast to accept me. It did not feel like it but I had an appointment within a month and am being seen within two months. That is really fast. It took my sister 5 months or so. I guess I have a lot of things to be thankful for. Let me list some....One is that my sister had the illness and so we knew what my symptoms indicated. Another is that we knew who could help. Next is that I am a nurse and know how to word things to make people help me. God has blessed me with the ability to be pushy without being offensive, that is a true blessing. Lastly, I am very blessed to have friends and family that drive me around to appointments and to pick up paperwork as needed.

So, we are finally off bright and early in the morning. It is really scary to think of the long day ahead but hope is keeping me moving one foot in front of the other. I also am going to load up on meds. Justin and my sister will literally be loading me on and off the plane. I hope they take pictures so that I have some memory of New York City. Wish us luck!