Saturday 16 May 2009

2:19 a.m.

I’ve gotten terrible headaches for as long as I can remember, and I’ve gotten progressively weaker over the last year. I’ve never been able to exercise for very long, because it causes headaches. Also over the past year, I’ve been dealing with vertigo, nausea, severe fatigue and balance problems, random stabbing and traveling pains, other weird sensations like things crawling on me and numbness, and ear problems (tinnitus, fullness) and eye problems (Posterior Vitreous Detachment in both eyes). I started having drop attacks (suddenly falling down with no warning) from sudden muscle weakness.

I finally got tired of being put into the wrong treatments, so I printed a list of my symptoms and took them with me to the doctor. I was tired of all of the little symptoms being overlooked in favor of the larger ones. Robert had also looked everything up online, and the closest thing he could find was Multiple Sclerosis. In the appointment with my doctor, he said he didn’t know what could include all of those symptoms, so I mentioned that MS kept coming up in the searches. Robert and I had done enough research to know I needed a brain MRI to rule MS out, so when the doctor mentioned it, I leapt on the chance. Dr. B___ also did a minor neurological exam and referred me to a neurologist, Dr. Ci___.

I had my first MRI on March 18. It was very stressful. Even though I had an open-air machine, I still panicked some. That MRI was on my brain, and it was with and without contrast.

After the MRI, I was given the films on a cd-rom to keep. Robert and I went home and looked at it immediately. We found pictures of brain MRIs showing lesions (people with MS) online and compared them with mine. We didn’t see any lesions on my MRI, but we knew we should wait for my appointment with Dr. Ci___ before we were sure.

Robert drove me to my first appointment with Dr. Ci___ on March 23, but I went in to the appointment alone. I took my cd-rom from the MRI with me and discussed my symptoms with Dr. Ci___. He did a more thorough neurological exam on me, including testing my balance and strength. After all of this, Dr. Ci___ finally explained what’s wrong with me: I have a Chiari Type I brain malformation. (Chiari is pronounced key-are-ee.)

Chiari Type I, also known as Arnold Chiari, is a malformation of the cerebellum. The most basic description is that my cerebellum is descending through the same hole in the bottom of my skull that my spinal cord goes through. the spine, spinal cord, and cerebellum all get cramped together and weird, sometimes even funny, things happen.

Chiari has been causing all of the symptoms I’ve already mentioned, plus other symptoms I’ve been having, like twitching (sometimes small, sometimes seizure-like) and aphasia (getting words mixed up, stuttering, getting stuck on one word or phrase). Not all doctors agree on which symptoms are or aren’t from Chiari, but patients agree that there are over one hundred possible symptoms. When the brain is involved...

Dr. Ci___ ordered two more MRIs for me, cervical spine (neck) and thoracic spine (between the neck and lower back). I had those MRIs on April 4. I was allowed to play my own cd, so I chose Violator by Depeche Mode. I was much more calm this time. These two MRIs were ordered to look for a condition most often related to Chiari, called Syringomyelia. I won’t go into that condition, since I do not have it.

In my initial appointment with Dr. Ci___, he told me that the only real treatment for Chiari is surgery, called Posterior Fossa Decompression. It involves removing bone at the bottom back of the skull and replacing it with a plate that allows more room to reduce crowding. Some doctors also open the dura and put a patch over it, but I will be opting out of that portion if my cerebrospinal fluid (CSF) flow isn’t blocked too badly. I wanted to get a second opinion on whether or not I needed the surgery, so I made an appointment with another neurologist, Dr. Ch___, on April 15. He confirmed the diagnosis and the need for surgery. He also ordered another MRI that I asked for.

My fourth MRI (but the third session) was for my lumbar spine (lower back) on April 28. This time, I was used to the routine, and I enjoyed Depeche Mode’s latest album, released only days earlier, Sounds of the Universe. I wanted the lumbar MRI to be sure that I didn’t have a syrinx (Syringomyelia) in my lower back. I was also looking for the bottom of my spinal cord to be completely sure I have Chiari Type I instead of Type II.

I had my next appointment with Dr. Ci___ on May 4. He reconfirmed my need for surgery, noted that I don’t have Syringomyelia, and referred me to the top neurosurgeon in this area, Dr. Ca___. That’s where I’m standing right now.

As a side note, Dr. Ci___ ordered a sleep deprived EEG due to my seizure-like twitches. He thought I might also have epilepsy. I completed the EEG on March 30. I was not diagnosed with epilepsy.

I’ve known since I was a very young child that something big – and bad – would happen to me, my body. Maybe I sensed the Chiari, or maybe I just noticed at a young age how many people seem to get cancer, break bones, and deal with other major physical problems. Possibly, I remembered (in the very back of my mind) that Momma had melanoma (skin cancer) when I was three and a half months old.

Being diagnosed with Chiari seems to have thrown everything for a loop, understandably. I have to get my head cut open, and that’s just scary. I’m not allowed to lift more than fifteen pounds, not like I can any more, anyhow. I’m not supposed to bend over. I’m also not supposed to go up or down too many stairs at one time. All of these seemingly unrelated things aggravate Chiari.

I’m doing the best I can for my health right now. Robert’s taking very good care of me and not being overbearing. The cats are even behaving half the time.

I have my good days and my bad days. On a good day, I can use the exercise bike for thirty minutes straight and go up and down the stairs without using my cane. On a bad day, I have a hard time getting out of bed due to fatigue, weakness, or headache. I can’t leave the apartment, and I don’t get anything done. I do the best I can with what I’ve got.

I know I’ll be fine after surgery, but dealing with that and everything around it (school and moving, to name two) is very stressful. I’m trying to find new ways to deal with my stress, but not a lot is working. I can only live hour by hour right now.