WOA!! ONE YEAR!!!!!
Weird to think about how much has happened in this year. But I want to thank my friends who helped me along, my unbelievable physical therapists who helped me recover and my family who have been so supportive this year!!!!!
I wish I could say, after the crazy year I had, that I'm done, cured, no more AVM! But, that's not the case.
The surgery knocked my AVM from two feeders to one, and from 2.5 cm down to 1.5 cm. In the last few months I started seeing doctors again to figure out how to get rid of the residual AVM. All the doctors I spoke with at Roosevelt were telling me that my best shot was with gamma knife with Dr. Lundsford in Pittsburg. I spoke with him and basically he told me that I have to rush to Pittsburg to get gamma knife and I shouldn't have waited this long. He said that I have 10% chance of something going wrong-- that's a gigantic percent!! But, he tried to lighten it by saying, "well, that 10% is smaller than your cumulative percent of bleeding out and dying." While I appreciated his input, his bluntness was a bit much.
In the meanwhile, we also sent my case to this other neurosurgeon in Arizona, Dr. Spetzler. He is super famous and saved Brett Michaels' life after the Tonys set fell on his face; he invented these techniques to stop patients hearts during surgery to avoid AVM hemorrhages during the surgery. He has performed well over 5000 procedures and is one of the founding fathers of the scale universally used to rate and measure an AVM-- The Spetzler Martin Scale.
This week, he reviewed my case and called my neurologist to tell him I need to have a craniotomy (shave my hair, crack open my skull, hands on brain, surgery) sooner than later and he feels confident to perform it.... in Arizona.
This news came as a shock to me and my family because we thought that was not an option for me.
Now, it seems its the only option.
This Tuesday I am meeting with my neurologist to discuss my questions and concerns about having a craniotomy. The risks are what would be expected-- paralysis, blindness, the loss of ability to do basically anything, or worst case, death.
After having a few days to process this and research the doctor and talk a bit with my family, I think I feel confident with Dr. Spetzler's experience and knowledge to let him perform the craniotomy on me. I still do have more questions and am still quite nervous about it, but I will be talking to my neurologist this week and hopefully have a better idea and feel 100% confident with my decision.
As per usual, I will keep yall updated as I get more info this week.
Thank you again for such a supportive year!! I couldn't have done it without YOU!
