HAPPY 8 MONTH BRAINAVERSARY!!!!!!
To celebrate 8 months, and graduating physical therapy 5 weeks ago, I met with my neurosurgeon today. Our meeting was to discuss the future of my AVM. We were waiting for me to make a full recovery before we would even begin to discuss further touching the AVM.
The doctor was running a bit late, so while we waited, my mom and I went down to the rehab floor to visit all of my physical and occupational therapists. Everyone was super excited to see me and even more excited to see me WALKING. It was so weird to be back on that floor and walking around-- but it was really nice to see everyone there again!
Now, onto the meeting. Dr. Berenstein was very pleased with my recovery and the time it took me. But, he said I still do have a real issue of an AVM in my cerebellum.
So, what are my options now? Well he does not want to repeat the same procedure as February (the embollization) because he is: a) afraid of another complication and b) feels that he maxed out the amount of damage he could do to the AVM (damage in this case is a good thing-- we want damage to the AVM, we dont want damage to the rest of the brain) using that method. So as of now, it seems that the embollization option is not an option. That leaves us with the two options of doing nothing, monitoring it and hoping it doesn't hemorrhage OR doing the gamma knife, radiation treatment.
In a perfect world, I will be able to live to be 100 without any hemorrhage or complications from the active AVM in my brain. However, it is not a perfect world, and the reality is that I am still so young and have my whole life ahead of me. With those odds, it is a fair assumption that at some point in my life it will hemorrhage if it is not taken care of now.
The second option was the gamma knife, radiation treatment. ideally this option is flawless. And, again, in a perfect world, I would get this treatment to zap away the AVM and everything would go as planned and viola, I will be AVM free........ If only it was that easy.
The risk factor is 3% (thats better odds than winning the lotto!) 3% risk factor is higher than my 1-2% risk factor that I faced in February-- but I, of course, fell into those odds.
So, what kinds of risks are there with this? Well, gamma knife is a non-invasive procedure, so theres no added risk of opening me up. The risks are with the accuracy, level, and amount of radiation that is applied to the AVM, as well as the overflow.
The procedure shoots in hundreds of laser beams targeting the AVM with different levels of radiation once they all meet at the AVM the radiation level multiplies to a level where it can deteriorate the AVM. HOWEVER, there will be overflow of the radiation. Ordinarily, that is not a bad thing; it over flows and kills a bit of the tissue surrounding the AVM. But, with my case, the AVM is so close to the brain stem that if it over flows and any amount of radiation hits the brain stem, then it is irreparable damage and I will not be able to bounce back.
One other huge negative about the radiation treatment is that it will take up to 3 years to find out if it was successful, to the same token, it would take up to 3 years to find out if there was any complications. Since we would be dealing with complications involving the brainstem, a complication can effect ANY function in my body. 15 months after the procedure, I could theoretically wake up blind one day without any heads up. 6 months after the procedure, I could theoretically not be able to walk again. The difference between this time and last time will be that I will not be able to re-learn to walk... I will not be able to re-see.
These are all huge factors to weigh in when deciding what to do next.
If I leave it alone, I fear everyday that it might hemorrhage. If I do radiation, I will fear everyday for 3 years that one day I might lose a basic function of my body. If I leave it alone, I will wonder for every headache I will ever have, if it is normal or if I should go to the hospital because its AVM related. If I do radiation, I will wait 3 years before I know if the AVM is gone or not.
Dr. Berenstein said that he will be sending my case to 3 different specialist teams to decide what they believe is the best option for my situation. He is also going to have a conference about me with his fellow neurosurgeons. He will be getting back to me within the month with their verdict.
I'm not really sure how I hoped todays meeting would have gone, but it definitely did not go as I hoped.
I don't know which way is the lesser of two evils. I was hoping to be able to go to sleep tonight, sure of what the future of my AVM has in store for me.... but I am now more confused than when I woke up this morning.
