Thank you, Jimmy. This is great advice! I will put together a short but concise history of my experience and possible factors. I really appreciate your input and very kind thoughts. I also have a recent functional MRI that shows the pain patterns in my brain. Pretty cool and should be helpful for the doctor to see. I wish every TN patient could have a functional MRI because it shows without a doubt that the pain is very real. I’ll keep you posted and wish you continued relief. All my best to you.
Hollywood, I just saw your reply of Jan 11. I had not seen it before, I don’t know why. Maybe it was because notifications weren’t turned on…I don’t know. I “think” I have them turned on now though. If you wish you can email me directly at jcworks@bellsouth.net. So, I just now read that you’re already numb, so no big deal if you get any numbness from the CK. Your doctor who wouldn’t recommend the GK b/c of loss of hearing, vision, etc was doing so probably to be on the safe side. I don’t remember if they warned me of that back in 2000 or not. That was 20 years ago. But I’ve heard that double vision is a possibility. I’ve had high frequency hearing loss since back in the 60s-70s. I was rejected by the army during Vietnam because of that. I hear normal conversation fine. But high frequencies I’m totally deaf, like some bird calls. But normal conversation its just fine. Weird, I know. But the GK or CK didn’t cause that. Neither did I get double vision. I was asked (I think) after the GK if I noticed any change about those things. Not sure though, that was 20 years ago for the GK. As for any side affects from radiation I have to say 0. None.
I will say this about vision. In January I had surgery on the left eye. It was because the eye was at times not aligning properly, causing me to see double (at times). I could blink and it would correct itself, then later be the same again. The good thing was I could blink and it would align, so I could control it. It was getting to be a bit of a hassle though so I let the eye surgeon correct it with a minor surgery. But that same eye also was a “lazy eye” (amblyopia) which I’d had since age 11. The eye surgeon said the eye muscle probably weakened over the years from lack of proper usage, all because of it being the lazy eye. So, nothing to do with radiation. This happened 20 years after the GK and 10 years after the CK. She did surgery and it is much better now.
Hi Hollywood Girl, I’m just wondering what you ended up doing, if anything.