Blog #3

My neurologist appointment is tomorrow morning and I'm getting pretty nervous. More nervous than I thought I'd be. The meds aren't helping so I'm sure we're going to discuss the botox injections and possibly even a pain block just to get me through the next few days.

With classes started back up, I'm getting even more stressed which is making my headaches worse. We're only a week into the spring semester and I'm already behind. All of my classes require a lot of reading and when you're taking 17 hours of hard classes, working 18-20 hours a week and dealing with Chiari symptoms, it gets pretty rough. My biopsychology class will by far be the hardest out of my 6 classes. I'm not to worried about my intro to global perspectives, intro to geography and sport social psych classes, although global perspectives requires some reading and geography requires some worksheets. I've already had a quiz in my developmental psych class and I have a test tomorrow. My world lit class requires the most reading and it's nothing current either. It's old times, bc and early ad old. Like The Odyssey and the Epic of Gilgamesh old. We had to write a "letter to the teacher" too which is due tomorrow. We basically just have to write about something that pertains to us. So I wrote about being diagnosed and having Chiari. This is it...

"Taylor Hughes

1-23-12

TR 1:30-2:45

          Last year was my first year of attending college. It was a big transition for me with moving away from home but I was really excited. About two weeks into the first semester I began to have headaches in the back of my head everyday which was very unusual because I normally only have sinus headaches when I’m sick. I blew it off at first but when they became constant and the pain was getting worse I called my mom to see what I should do. She suggested to go to the school’s health center so I went and they said that my headaches were probably because of stress from a big change taking place. I wasn’t stressed about the change at all so I told them that and they sent me away with some Motrin.

          My headaches continued to get worse and it began to affect my vision so I went home in October to see my doctor. They immediately sent me to get an MRI. I was diagnosed with Chiari Malformation Type 1 which is a brain disorder where the skull is abnormally small so if forces the brain stem down through the opening in the base of the skull. This causes a lot of pressure on the spinal cord and can result in strokes, paralysis, along with many other health issues and even death. There is no cure.

          I was immediately sent to a neurosurgeon in Morgantown who said that he would only perform surgery if it was absolutely necessary and sent me to a neurologist. At first we tried medicine to manage my symptoms, which had increased to not only constant migraines and vision changes, but to ringing in my ears, fatigue, nausea and numbness and tingling in my hands and feet. In February at my neurosurgery follow-up appointment they discovered that I had developed an air pocket in my spinal cord which caused a decrease in the flow of cerebrospinal fluid to and from my brain and spinal cord. I had to leave school and have immediate surgery on March 4^th. I still had symptoms until 3 months after the surgery. I was symptom free for about one month and then it all started over again.

          When my neurosurgeon said that he couldn’t do anything else my neurologist began trying medicine after medicine after medicine and he was constantly switching the dosages. When he prescribed me a medicine he knew I was allergic too because he ran out of options about two months ago, I left and started seeing a new neurologist. He’s giving this new medicine one month to help with my symptoms and if it doesn’t we’re going to try injections. My month is actually up tomorrow morning.

          A lot of people say that if they didn’t know me last year they’d never be able to tell what I went through and am going through because I don’t talk about it a lot and I try to stay positive about it.  But it’s not only hard knowing that I’m going to be dealing with this for the rest of my life, but it’s also hard knowing that it’s affecting my younger brother too. He actually has a growth hormone issue because of it so they’ve known about his since he was three years old. He’s 15 now and starting to have headaches. He doesn’t want to go to a doctor either because he’s seen what I went through and am going through now. I just hope that both of our symptoms can soon be managed and that his won’t get to the extent that mine were and are now."

I knew that my brother, Logan, had the growth hormone issue (he has had to get shots every day since he was like 8) but I never knew that it was because of Chiari until I was diagnosed. My mom wouldn't tell me what the doctor said I had because she knew that I'd research it and freak out. So I searched my symptoms anyway and narrowed it down to Chiari and that's how I found out that his growth hormone issue is because of that. I really am worried about him. Every since my surgery he doesn't want to talk about it. He doesn't want to look at my scar or feel the indention in my head. Every time I'm home I tell him that if his headaches get worse or if he starts to have more symptoms that he needs to talk to mom and go see a doctor but he constantly says that he's fine. He could be but he doesn't seem like himself all the time anymore. Growing up, I picked on him, he picked on me but no one else could pick on either of us. We kind of protected each other and now I feel like I can't protect him from this or help him at all. He doesn't want help. He just wants to forget about it but I know that's not possible because both of us will have this for the rest of our lives. It sucks, but hopefully he'll want to talk about it soon.