Hi All,
I am four weeks post surgery, and have been living the high life. Ohh, Thank God for second chances. Only weeks ago I sat catatonic for hours, only able to blink, wondering when was going to be the moment the paralysis would become permanent. Now I wake up each day better than the last. I waited to post my results because I had read so many postings that the first two weeks are so good, but that the real benefit comes with time. OK, I just can't wait any longer to say how great it is to be on this side of all of this.
If you are thinking about whether or not the surgery makes the difference, think on this: before the surgery, every day I woke up wondering what new symptom woould I encounter that day, and how much closer to permenant damage was I getting. You may know the feeling. Now, thanks to God and the extraordinary work of Dr. Capocelli and his team, I wake up everyday wondering what new sensation will I get back today that I haven't had in years, and how much closer to really living again will I be today. That's the difference.
As it turned out, my brain was not only an 8mm decent from the skull, it had tangled in my C1 vertebrae and wrapped itself around my sppinal cord. My brain was as dry of spinal fluid as the Mojavi Desert, and the dura was hard and callused. It took twice as long as expected for the surgeon to "unwind" my brain, but when he went to caurtorize the tip, it retracted into my head! Now they have patched my dura and applied a new type of plate that will absorb in about two years as my skull grows back over it. I will have a custom shaped head for my big ol brain. AMAZING!
Since I have been home from the hospital, I have planted two gardens, had a crawfish boil and hosted two parties. I should take it easy -- but it is so hard to lie down when I am finally living again. I promise to be good. I have learned that I am not ready to walk up steep hills, and I limit my exhertions. But I don't have an exploding head. It doesn't hurt. I can see without a visual echo. I can stand without falling. I can walk from a cold building into the warm sun without getting dizzy. I KNOW MY WORDS! I haven't lost anything since I have been home. A storm rolled in, and I laughed at it, it didn't take me down. Chiari isn't running my life. That is my miracle.