My Appointment with the Physical Therapist

Last Thursday (March 3rd) I met with the Physical Therapist for the first time who specializes in vestibular disorders. We did not do any physical therapy as the appointment was purely an evaluation of how bad my balance is and a determination of what we can do to help improve it.

So we did a bunch of standardized tests to see how my walking was when I went forwards and backwards and moved my head to either side and up and down. We also tested whether I could read an eye chart from a distance while moving my head side to side and up and down which I could not. The first line was kind of easy because I could memorize it and they figured that out. Then the therapist also put these neat goggles on me like a scuba mask where I could not see put she could video tape my eyes. It was pretty cool! She shook my head back and forth fast and up and down to watch the movement of my eyes. The test is called a VNG (videonystagmography test).

I am not sure how to explain this but I have what is called a "nystagmus". It is one of the reasons I am having such difficulty with balance and need to put my motorcycle riding days to an end. Last spring well renting a bicycle, I looked over my right shoulder to see if Harley was behind me and when I turned my head back center, I lost control of the bike and crashed. The nystagmus is predominant in my right eye. When I make quick movements with my head I get disoriented and my field of vision keeps moving. It is hard to explain. For example, while I am walking or jogging I cannot really makeout people's faces because they bounce up and down too much.

Prior to seeing the physical therapist, I had an ENG (electronystagmography) test done at the Seattle Ear Clinic where the nystagmus was diagnosed. The test I had there uses a recording of eye movements from electrical signals instead of video. I had lots of wires hooked up to my face and had to watch lights pass by on a bar on the wall. They also recorded my eye movements when my eyes were closed and I was telling a story. When my eyes are shut, for some reason my brain still thinks I am moving and my eyes rapidly move back and forth.

So here is what the brochure says about the nystagmus. I need to do a search online for a more appropriate explaination but for now this might help you to understand it:

"THE ANATOMY UNDERLYING EYE MOVEMENT TESTING"

Although your balance system is located primarily in the inner ear, it is connected with the brain and brainstem, the eyes, and the sensory nerves throughout your body.

Each of these centers sends and receives messages that permit you to maintain your balance. When a disorder is present, these messages cause you to feel abnormal dizziness.

One clearly measurable sign of what is going on with your balance system is a rapid, involuntary eye movement called NYSTAGMUS. By stimulating the nervous system in various ways that usually affect balance, and then carefully measuring your eye movements, your physician can learn much about any abnormalties in your vestibular system.

Well hmmn. That did not exactly tell me the definition of a nystagmus. I have no idea if this is a permanant thing or not. I guess this is something that I need to ask the neurotologist and physical therapist. I was expecting a typed report of the data analysis from the doctor or audiologist that performed the test but I was disappointed to find out that no report was made except unreadable hand written notes. When I asked for a copy of the medical records, all I got was the computer data charts that did not tell me much.

I guess I will have to mark that on my list of things to do this week.

The other interesting test that the physical therapist did was to have me stand with my shoes off and eyes closed. This worked pretty well if I concentrated. However, when she had me stand on a foam pad that was about 2 inches thick and she had to catch me from falling. I could not feel myself moving or falling at all! It was like the time I was out with Harley for a walk and I was sort of standing on an incline. I went to take off my jacket and started to fall backwards. He caught part of my jacket just in time to stop me from falling over backwards! I literally had no idea as I could not sense it!

Right now I have facial palsy on my right side that started on December 14th. I tried taking steroids to remedy it but this is caused by the brain tumors and not from a viral or bacterial infection. Thus, the therapist assigned me 5 facial exercises to do 50 reps each of in the mirror each day. It does not seem to help much. It has been 3 months. Dr. Vermeulen who administers Gamma Knife and FSR radiosurgery here, said that it took 4 to 4 1/2 months before one of her patients showed improvement in the facial weakness. Still, there were patients who had permanent facial damage. They cannot assess yet which will be the case for me.

At the Seattle Ear Clinic I also had this test done to determine the amount of facial nerve function I had left. That test is called an ENOG (Electroneuronography test). For this procedure they again hooked up electrical wires to my face and shocked my facial muscles to stimulate the nerve. I had the test done twice (when starting steroids - Prednisone and when finished). Both times revealed my facial function to be at 52%. I can't really tell you much about what that means except that I do not have face droop on that side. The weakness is apparent when I try to grin with teeth, drink, eat, raise my eye brows, or blink my eyes. I guess you gotta make it work for you so now I can do a cool trick and wink at people pretty easily with the left eye because the right eye does not close as easily.

Part of my eye problem is that the right eye is drying out due to not blinking it as much and lack of tear production caused by the facial weakness. So I am on this regimen where I have to administer artificial tears hourly and use at thicker tear source at night (Refresh Liquid Gel). I often rub my eye or have to manually close it too.

My next appointment and actual first physical therapy session is scheduled for March 31st. I told the therapist that my goals were to work back up to learning to swim again, being able to dive (balance on shore with my equipment), hike with poles, and backpack. It would be great if I could be able to rollerblade and ski again too. The waterskiing would be cool but I did not get to do that often enough anyhow and as far as the motorcycle, some day Harley is going to upgrade to a touring bike so I can sit back an enjoy the scenery. I did have a sweet chic bike though (teal, purple and white Kawasaki EX 500 - great and fun bike)!

I guess it is a good thing I never invested in that mountain bike I wanted. I used to love cycling back in high school but my other hobbies took over (primarily rollerblading).