We came to Arizona emotionally and mentally prepared for the craniotomy. After Dr. Spetzler reviewed my scans from Tuesday and called me with the update of: "No craniotomy. Let's do gamma knife instead" my stomach turned because of the horrible potential outcomes we had learned about gamma knife earlier this year when we were researching this option.
I knew I trusted Dr. Spetzler, but I also knew I didn't trust gamma knife. What a weird feeling.
Dr. Spetzler set up a consultation for me and Dr. Nakaji (the neurosurgeon/radiologist) to meet and discuss the gamma knife option first thing this morning.
We came armed with questions to interrogate the radio-surgeon with. Surprisingly, we didn't have to. The second Dr. Nakaji walked in the room we instantly, unanimously, felt a sigh of relief in the room. Dr. Nakaji was very knowledgeable and walked us through the newest findings of my AVM. He discussed why surgery is not really the best option anymore in light of the new scans-- the risks of surgery outweigh the risks of the gamma knife.
The biggest risk with the gamma knife was that the brain stem was really close to the AVM. If the brain stem got hit, it could be detrimental, and we wouldn't even know necessarily for up to 10 years. Based on my new scans, Dr. Nakaji and Dr. Spetzler can say almost definitely that the brain stem is miles away in term of radiation so the brain stem will not be touched at all.
Our next biggest concern was the waiting period to find a complication due to radiation spillover. Dr. Nakaji discussed our concerns with us at length. He explained that my AVM was small for the gamma knife scale, therefore, requiring a smaller dose of radiation. Because of the smaller dose, the spillover rate is not a big concern for the procedure. He said the wait to find out the success of the procedure would be an MRI once a year for the next 3 years (maximum) and after the 3rd year we do an angiogram to make sure it's gone.
Dr. Nakaji felt very confident that the gamma knife is the best option for my AVM. What is very unique about Dr. Nakaji and his opinion is that he is both as a neurosurgeon, as well as a gamma knife radiologist. So, he really has a grasp on which option would be best for each patient. He said without a doubt I would have less likelihood of complications with the gamma knife.
We asked, literally, every question we could think of; after and hour and a half of talking to the doctor, unanimously, we felt really comfortable with the gamma knife option, and with Dr. Nakaji administering the treatment.
He sent us to meet with his partner, Dr. McBride. She was just as pleasant as he was. She spoke to us at length, further explaining gamma knife and reiterating the low risks for my case.
While the gamma knife is seemingly a god sent, there is still one thing that troubles me still with it; I was looking forward to finishing surgery and knowing once and for all that the AVM is gone. With gamma knife, I will not know right away and am therefore still at risk of hemorrhaging until its totally obliterated.
Dr. Spetzler cleared all of the schedules of each doctor that would take part in my gamma knife procedure. So, once we were comfortable, the gamma knife was booked and ready for me for first thing tomorrow morning.
Tomorrow will be a long day. I get there at 5am, they bolt a cage type thing to my head and then I go for another angiogram. They use the angiogram along with the cage measurements on my head to accurately plan a radiation administration route. After the scans, I wait for the longest part--the planning. Dr. Nakaji, Dr. McBride and the rest of the gamma knife team assess the best approach with the radiation; the best level of radiation to administer to minimize spillover and maximize results; and the best way to protect surrounding tissue. Once they finish making all these decisions, and planning, they double and triple check their work. I then go into the gamma machine and lay down and they press a button which administers the radiation. I don't feel anything and I am awake for procedure. It will take about an hour, depending on the planning. After we finish I stay in the hospital for a few hours for observation and then back to the hotel. They feel it is unlikely for me, but the doctors say that within the first 24-48 hours I could have cerebellar swelling. If that happens, they would give me steroids and the swelling will go down. I am supposed to take it easy for 2 weeks after the surgery to make sure that there is no residual delayed swelling. After that, I can resume life as normal and wont worry about my AVM until next year for my MRI.
While this comes like a curveball to us, I think its for the best. I don't have to go through the lengthy recovery time and I don't run the risk of needing to re-learn to walk, again.
I am in the hands of the best doctors in the world for this... if that isn't comforting, I don't know what is.
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