I have been absent for awhile but doing well. December was a busy month. After the disappointing "episode" I restarted the steroids. I only felt the weakness for a couple more mornings so for a few days I limited my driving to the neighborhood a mile down the road which is the closest I can walk the dogs.
Just before the "episode", Harley was sick and it was passed onto me as the steroids started making me feel stronger but ironically began to depress my immune system. (I know.....weird paradox there. I was needing the steroids to strengthen my body while at the same time it made me more susceptible to illnesses.) Accompanied with the sinus pressure built up from the head cold I began having double vision again. The double vision was not extreme like when I was in the hospital but it made reading emails and writing them from my text phone or computer very straining and challenging. As the head cold proceeded to improve, it appeared at first that the double vision was dissipating. My theory, seeing as no one could offer me a logical medical explanation for why this was happening, was that the pressure built up in my sinuses were also putting pressure on my eyes and thus skewing my vision. However, this week and last week I have continued to have this intermittent visual obstacle which is extremely annoying. The jury is still out on what the heck is going on.
Oh yeah, you are probably wondering what happened with that eye appointment I had down in Portland at the beginning of December. Well it is a case of strange unfortunate luck. There was a big storm here in the NW which caused major flooding damage on the interstate freeway to Portland. As a result, the direct route to Portland was shut down. There was a detour option but the route traveled toward central Washington through Yakima costing hours longer of driving time and gas. In other words, it really was not a route one wanted to take unless it was absolutely necessary such as catching a cruise boat to Baja, Mexico.
When Harley spoke with the receptionist and tried to reshedule with this particular doctor he was informed that was not going to be an option either. As "unfortunate luck" would have it, they had just discovered that same week that the doctor was being transferred to California within 2 weeks.
So anyhow, I searched around Seattle to see if I could find another neuro-ophthalmalogist who could work with us, be interested in what I have, and tell me what the problem is and how to solve it. First let me tell you that there are few neuro-ophthalmalogists in the country. It is a specialty where one is board certified in both neurology and ophthalmalogy. That means such a specialist will have an understanding of vision complications related to brain tumors and other lesions or disorders of the central nervous system. We thought surely there must be some others in a big city like Seattle.
Interestingly I found another doctor who specialized in vestibular disorders which is what I have. "GREAT!" , I thought. "What a bonus - we can address both my balance dysfunction and vision problems at the same time. I can be looked at holistically which is really needed in my case." I became more excited reading about this doctor and my faith in his ability to understand what is happening to me. Sigh. My fervor was short lived. My neurosurgeon worked on getting me a referral there and the office called Harley to tell him that I would not be an appropriate patient for their clinic. Apparently my case is too "complicated" for the only full-time neuro-opthalmalogy clinic in the 4 state region of Washington, Alaska, Montana, and Idaho. How do you like them apples? We were told to go back to the University of Washington where we did not feel we were getting the answers or level of care I need. So off I go mid-January to OHSU to see the partner of the doctor who was transferred to California.
I also had my first MRI post surgery on December 21st. My sister brought me so we made an afternoon and evening of seeing and doing Christmas activities in Seattle.
Then after all that of course were holiday projects to complete and holiday gatherings to attend.
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