Wednesday, April 24, 2013

Honey, I shrunk the AVM!!

So, I woke up this morning still sore from yesterday, but ready to go enjoy Sedona.
Sedona is about an hour away from the hotel we're staying at. We hit the road at about 10:30. At 10:52 my phone rings, it was a 602 area code so I knew it had to be someone from the hospital. I picked up, and it was Dr. Spetzler (my surgeon for my craniotomy) He told me that he reviewed my MRI from Monday and my angiogram pictures from yesterday. He explained that since my last scan (February 2012) my AVM has actually shrunk by nearly half. He said that based on the new scans, if he did the craniotomy as scheduled tomorrow, it is very likely that I will need intense therapy to re-learn to walk again. He said he would not put his wife or daughter through that so he does not feel comfortable doing that to me.
He then told me that gamma knife is a viable option for my AVM. This came as a complete shock for me because, first of all, I was mentally and emotionally ready for him to crack open my head and rid me of this AVM once and for all, but secondly, we have already visited and turned down the option of gamma knife earlier this year because of how risky it is and how close to the brain stem the AVM is.
Dr. Spetzler reassured me that the AVM has shrunk substantially since last year, and it shrunk away from the brain stem--so, that worry is no longer a worry; my brain stem will be totally safe. Dr. Spetzler told me to talk it over with my parents and neurologist and call him back on his cell if I want him to schedule my appointment for a consult with Dr. Nakaji (the gamma knife doctor) I tried to digest this 180° call... talked it over with my parents and called my neurologist.
After discussing the new findings with my parents we sat in mostly silence for the rest of our drive to Sedona. Our cell phones had no service as we drove through the mountains... not that it mattered, we were all looking out our windows thinking and absorbing the new fact that our cross country craniotomy adventure is now a potential cross country gamma knife adventure.
Sedona was beautiful, we took lots of pictures. But we had this big change in schedule clouding over us.
As we drove out of Sedona, and the service came back to our cell phones we were able to make phone calls again. I spoke to my neurologist who said he wanted to talk to Dr. Spetzler before he gave me any advice on the change in schedule. I called Rabbi Benny Fischer (a doctor referral service based out of Israel-- he told me about Dr. Spetzler a month ago) and then we waited. In silence. We waited for someone to give us guidance and tell us that this route, which we deemed the most dangerous approach, was in fact the right approach.
Finally, we got the call from my neurologist. He said that he spoke with Dr. Spetzler and due to this new information about the change in size and location of the AVM, they feel the gamma knife is my best option now.
I called Dr. Spetzler and gave him the go-ahead to cancel the surgery for tomorrow and set me up with a consultation for the gamma knife radiologist.
The good things bout the gamma knife are:
*Its non-invasive-- they put this helmet on me and shoot lasers into my brain and I get to leave the hospital a few hours later.
*There is no recovery time-- I can go immediately back to regular life.
*The brainstem isn't close enough to the AVM anymore to be considered at a dangerous proximity.
The downfalls to the gamma knife are:
*It's radiation-- its unforgiving. Anything goes wrong, its permanent.
*It isn't immediate. They will zap the AVM but it will take 6months-3years to know if it was even successful.
*We already spent the greater part of this last year convinced that gamma knife is not an option for me-- now we have to accept it in 24 hours.
We have the consult with Dr. Nakaji in the morning at 9:15 and we will drill him with all of our questions. Hopefully I will have good news to report tomorrow!
I guess its a blessing in disguise.... They don't need to cut open my head, and hopefully everything we feared about the gamma knife is a non-issue now with the up to date scans.

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