WOW! Sue, Thanks for the honorary Ph.D. I wish I was derserving. It would probably be more accurate to say that I am a good candidate for the "nut case" award. I think getting to the decision about which treatment to go with is basically a personal decision when you come right down to it. There is so much research here and there, and I think you can find more pros and cons than you would ever want to see or hear about. It can be very confusing to get consistent research, IMO. I think in the long run you just get that "gut" feeling that so many here on this board talk about. It really does happen! So on to answering the questions!
1. What kind of radiation did you choose and what was the dosage used? I had GK on Oct. 21, 2008. I think it was 12.5 Gy. I was in the machine for 27 minutes. My doc said since my AN was so small there would be less radiation going into my head, and this is one of the reasons I decided to go ahead and have GK. As you can see from my signature, I was in W & W mode for quite a while and only decided to go ahead with treatment once my AN started growing. I was told by many docs that I could continue to W & W so it was difficult to make the decision.
2. How old were you at the time of treatment? 49
3. How big was your AN/was is NF2 related? See my signature below. Not NF2 related.
4. How long ago was the procedure done? 10/21/08 (I am a "newbie" postie!)
5. Any side effects/immediate or delayed? I didn't respond to the "happy" meds they gave me before having GK. I cried through the whole procedure, but I wasn't hysterical. The Versed didn't interact with some other meds I was taking. In retrospect, I would have opted for just the Ativan they gave me initially. I asked for the Versed so it might not be routine for everyone to get it. After they took off the headframe (which was not a big deal IMO), I walked out of the GK center about 15 minutes later. Walked up four flights of stairs to the car, and then stopped at the 7-11 down the street and went in for a diet Coke. To be honest, I initially thought the GK machine was "out" of radiation because I didn't feel anything immediately after or for several days. Then on day five post GK I had a weird balance problem. When I got out of bed in the morning, I slammed into the wall as if a magnet was pulling me to the wall. My husband had to help me get back to bed because I could not pull myself away from the wall. I was dizzy for the rest of the day. Actually a good thing this happened because it made me realize that I actually did have radiation shot into my head. The balance think resolved itself. I did take a round of steroids about three weeks after GK because I had fatigue that wouldn't go away. Didn't notice anything different with the steroids. I continue to have periods of fatigue. At about 6 weeks, I thought my hearing was worse (I had good hearing before GK). Doc had me go in for a hearing test, and it came out the same as before GK. Then at about 8 weeks, I thought I was having balance problems, and the doc had me go in for a balance test and another hearing test. Everything tested just fine. The doc said the sound proof booth is the only way they have of testing hearing. He said in the "real" world there could be some problems that can't be detected in a hearing test. I think I have a bit of word discrimination problems, but the volumn seems to be fine. I am pretty much use to hearing issues now. I get tipsy sometimes, but I haven't had any problems with doing anything I did before GK. Then in Dec. I had these weird sensations in my head that kept getting worse. My doc sent me to see the radiologist, and she was baffled. She sent me for a MRI (this was at the 3 month mark). My AN was already starting to shrink, but the MRI showed that I had a sinus infection. I just finished a round of antibiotics, but I think I still have the infection. I have a history of infections and a couple of surgeries so maybe I need to get things blown out again. The weird sensations aren't as frequent now. I think I have been paranoid at times just looking for side effects. I am more chilled out now, and I think my GK has been a success.
6. Has it proven to be effective on controlling your AN (shrinkage? stable?) At my three month MRI, my AN went from 6.86 MM to 6.16 MM. I am totally impressed with shrinkage in such a short amount of time. My next MRI is in Oct. so will continue to see how this waiting game plays out.
As for getting to my decision to have GK....totally a personal decision that was right for me. I found a doctor that I really connected with, and that made a huge difference. I got a bonus with my doc in that he does GK, CK and surgery. He recommended GK (he liked that it is the "gold standard"), but he also said he would do CK if I preferred this option. He didn't think my AN was a good candidate for surgery since it was small and not in a critical area. I decided to go with my doctor's recommendation because he and his team seemed to be confident in the procedure. My AN doc and the neurosurgeon were both trained at Stanford to do CK and at Pittsburgh to do GK. I didn't feel the need to go to Stanford or Pittsburgh because my docs seemed to be competent. Also, I found a person on this board who had used my docs, and he has been very satisfied. He is doing well, and he hasn't had any significant problems....and he didn't lose any hearing. So, this is how I came to my decision. I think CK would be another fine choice, and you will find many here who are big advocates. I am glad there is such amazing technology available.
Best wishes. Do your research. Find a good doc and facility and get ready for your "gut" feeling to kick in.
Nancy Drew
P.S. One more thing. I also wanted to be close to the facility where I had GK so I could have follow-up here instead of having to travel. The GK center is only 10 miles from my house. If I have a problem, I just call and go in. This really gives me peace of mind.
