I thought I would add to what others have done here and describe my experience with GK at UPMC. I hope this is helpful for anyone wondering what to expect with Gamma Knife with Dr. Lunsford's team.
My wife and I drove from Michigan to Pittsburgh on Wednesday. We chose to stay at Family House- which is housing provided for UPMC patients. Its a large Victorian looking house that feels sort of like a cross between a bed and breakfast, a hotel, and a college dorm. It is partially subsidized, and so was only $60 a night and just a 5 minute walk from the hospital. We weren't there long enough to get to know anyone else, but there is definitely a community vibe and feeling of comradery among the guests that I enjoyed. The rooms were small but very nice and home-y feeling.
My pre-procedure meeting with Dr. Lunsford and his team was at 11am the next day. We reviewed the history and characteristics of my tumor, how gamma knife works, and what to expect during and after treatment. Dr. Lunsford reiterated that there is a very high likelihood GK will at least halt any further growth of the tumor (which would be considered a success), and a "reasonable" chance I would retain my current level of hearing. I asked Dr. Lunsford if, in the event I lose serviceable hearing but retain some hearing nerve functioning, could I boost my hearing with a conventional hearing aid. He said I could, but not everybody finds this worthwhile.
The Gamma Knife procedure began at 5:45 the next morning. Of course, I slept terribly the night before (woke up every hour to check the clock). Once I checked in I didn't wait very long before the nurse took me back. Step one was to take an ativan and get my IV in (for more relaxation meds). I was already completely relaxed/semi-drugged up when Dr. Lunsford came in to put the head frame on. The whole thing was so easy. I really don't remember much, but I don't recall any discomfort. Then I was wheeled off to the MRI where I took a nap. Apparently Dr. Lunsford runs the MRI himself. I was relieved to hear from him that my tumor had not grown at all since June.
The coolest part of the whole procedure was when the nurse was wheeling me back to my little waiting area after the MRI. She stopped by the control room (a room with glass windows overlooking the MRI machine and GK machines) and pointed out that the Gamma Knife team was reviewing my slides and planning how to proceed with the radiation. There was Dr. Lunsford, the guy who brought GK to the US, a radiation oncologist, and a friggin' physicist huddled around a monitor looking at MY tumor. I could see them in the war room plotting critical coordinates and determining how radiation would be delegated to key areas of the AN such as the margin and where vessels intersected with the tumor (in order to destroy the blood supply to the tumor).
I drifted in and out of a few naps and watched some TV while I waited for the person in front of me to complete their time in the GK machine. After about 40 minutes it was my turn. I was excited to see that I was going to get to use the Perfexion machine. I looks like a futuristic igloo. Like everyone else has said, the machine is completely silent, you don't even know its on. I snuck in a few more naps and listened to the CD I had made for the occasion.
I was able to walk back to my waiting area where they removed the headframe. I got a headache and felt a bit nauseous after it was removed, but took some tylenol and felt OK about an hour later. We went back to our room and I took a nap. When I got up, I drank an iced coffee and felt like a million bucks. As I had resolved to do, we walked to Primanti Brothers for my victory sandwich (not the original location but they had one right in the area). As you know its important to listen to your body after treatment, and at that moment my body was telling me to destroy a large pastrami sandwich with french fries on it, and an entire side of fried pickles. It was glorious.
The next morning I took off the band aids covering the pin-hole sites. I couldn't believe how small they were, they looked like tiny little specks! Walking down the street you'd never know I even had the head frame on. I was completely fine to drive back. Since then I've basically felt like myself, just a bit more tired than usual. I'm not sure if this is because of the radiation or the lack of sleep I've had over the past few days. Only time will tell.
Overall, the entire experience was incredibly positive. UPMC, Dr. Lunsford, and the whole gamma knife team really are absolutely first class. I left Pittsburgh with no regrets whatsoever about my treatment decision (I hope I still feel this way 3 years from now).
Having an AN has been a difficult process, but at this point, I can see that its also forced me to undergo a powerful transformation, and in some ways that has been a good thing. I wasn't stress free before my diagnosis, I just filled that space with other things to worry about, like where my career and finances would be in five years, or how I stacked up against peers. Having an AN diagnosis has really lifted the veil on how silly this perspective was. Now I'm spending more time being in the moment, appreciating every day life, and having compassion for others. I'm taking better care of my body and my well-being because I appreciate life and my body more. I know there are going to be tough days ahead, but in many ways, my life has become more meaningful, and its all thanks to a clump of schwann cells (that is hopefully dying as I type this).
Please message me if you'd like more detailed about my experience. If helpful to others I can post my progress as I have my follow up MRIs.
11/2/2013- I posted a one month follow up in replies
12/18/2013- posted a three month follow up in replies
3/27/2014- posted my six month follow up in replies
