Monday, June 28, 2010
It has been a while since I have posted an update because there has not been much to report. I did have yet another brain shock yesterday of medium intensity but my condition in that regard is nothing like the 20 per day I had been experiencing.
My eyesight, however, is changing. I will not be tested until we get back to Grand Rapids in another week but up here in the woods I have found myself squinting a lot to make things out. My new Walgreen's dorky reading glasses—a fun curiosity I wasn't sure I needed just a few weeks ago—are now a necessity. And the vision loss in my right eye (blurry in the distance) is even worse.
This is not necessarily bad news. Light or color loss (not blurriness) is what the doctors are really concerned about and my vision is okay in that regard. My eyes are just getting older. I'm over 40 now (but only thiiiiiis much) and everybody starts losing some vision around that time. It's probably just a strange coincidence.
The other thing I have been dealing with is harder to measure. My sense of disorientation (and perhaps dizziness) is back. Following the first tumor resection I experienced a significant amount of dizziness and disorientation for several months. Even when I made it back on stage I had to grasp the music stand when standing for bows. Sudden changes in direction—both physical and mental—bothered me. For a while it went away as I healed but now it seems to have returned. It could be many things including allergies or the unfamiliarity of my brain processing images not pristinely in focus anymore. Still, it is unnerving to feel like a pilot flying in the clouds trying to keep the wings level by staring out the window. Even if a lot of me feels like it is healing there are other parts that are out of sync.
In another bit of news, I read with interest that Scott Hamilton underwent brain surgery recently to remove a craniopharyngioma tumor just like mine. One thing I have discovered about adult craniopharyngioma patients is—because of their extreme rarity—we all find one another on the Internet to read each other's blogs, compare notes and discuss symptoms. Assuming my theory is correct, let me say this to a new reader of mine:
Hello, Scott Hamilton! Welcome to my blog, God bless you, and—from one craniopharyngioma patient to another—I wish you a speedy recovery!
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Hi again! It's been awhile since we emailed. Good to see you're doing well. Since last we "spoke" my daughter had a craniotomy to drain the cyst again and a shunt revision. As well, she has just finished her radiation treatments and the last MRI she had (a week before the end of radiation) was already showing the cyst portion of her craniopharyngioma shrinking! It was a VERY nice surprise. Her somewhat wonky vision is really her only complaint but it is slowly improving. You and she amaze me with your (multiple) recoveries. Keep up the good work and we're sending lots of good vibes for your continued healing!ReplyDelete