“Baby, why are you laying in the grass?” Those are the words I heard when my husband, Stuart found me passed out in the front yard with my faithful companion sitting beside me. Nana, my ‘ole girl, is a 14 year old Yorkie that Stuart got me for Valentines Day in 2004. She is still alive and kicking, barely but none the less still be my side. That ‘ole girl has been through it all with me.
Passing out began to happen regularly several times a day as was vertigo. My left ear sounded like it had a helicopter in it 24-7. The pressure I felt in my ears, head and throat scared me to death. Gradually, I started stuttering and walking like I had a stroke that affected the right side of my body. The headaches were horrendous.
I had an MRI and my neurologist quickly sent me to see a Neurosurgeon, as my old friend Chiari was back with a vengeance. Enter, Dr. Duckworth, a highly esteemed Neurosurgeon at Baylor College of Medicine. Remember that God-complex I referred to in “Just A Little Bit of Skull?” Well, Doc Duckworth truly thought that he was God. He had the worst bedside manner of any neurologists or neurosurgeon I’d come in contact with. Upon entering the room, he played on his cellphone the entire time. Not once did he make eye contact until the very end of the visit. His demeanor was that of someone who had been interrupted from watching a big game or their favorite show. He fielded our questions though not looking up once. He explained that I had a syrnix in my spinal column that was causing a blockage of my spinal fluid flow. Spinal fluid bathes the brain. My brain was not getting bathed. Very curt, he explained that I needed to be decompressed again. He did take the time to point out that my previous surgeon did not remove enough skull in 2004. He told me that I was in bad shape and then finally looked at Stuart and I for the first time. He told us that he honestly didn’t know if the decompression would take away any symptoms. He exact words upon leaving,” I’ll see what I can do, don’t expect much.”
I don’t need to describe the moments that followed. You can only imagine. I had asked him how much knowledge he had regarding Chiari. He told me “enough.” When I asked how many decompression’s he had performed he said, “about 20 but I have never had to redo one.” I knew I didn’t have much of a choice. He had the most experience of anyone in the Kelsey-Seybold Network (cult) and I was backed into a corner. My day to day, my life was in the hands of a man whom I didn’t trust or like. I filed request after request to get out the the Kelsey-Seybold network to seek a second opinion. I begged and cried with case manager after case manager. The response given was if there was a “specialist” in the Kelsey-Seybold network, an out-of-network referral would not be given. I’m sorry folks, but 20 some-odd decompression’s under ones belt with “enough” knowledge does not a specialist make. I fought for a month or so as my health deteriorated daily. I knew permanent damage had been done and the longer I waited, the harder the surgery was going to be. I decided to go ahead and schedule the surgery. It was to be in the summer of 2014. I was desperate.
This pain after this surgery was horrid. Doc said it was because he had to remove more skull than he thought he was going to have to. He also burned the tonsils at the base of my cerebellum, and cleaned up scar tissue that had formed. I was ten years older and bouncing back quickly would prove to be more difficult. Good news, as soon as I woke up I knew that the stuttering was completely gone. I spent 24 hours in the Neuro ICU, two days on the regular floor and then home.
The pain I felt once I got home was extreme. I am tough and it took me to a place I had not been. I had experienced the “disruption” of my normal day to day prior to the surgery. I could not drive because of the constant passing out. I didn’t leave the couch much because of the vertigo. I hurt all of the time: head and spine.
Once home, I took pain medication every four hours. I don’t do medication well. It kept me awake, or maybe it was the part of my brain that had been fiddled with per Doc Duckworth. I started having aural hallucinations. I had no idea there was such a thing but there is and they are very real. I heard the door bell ring all day long when no one was at the door. I heard people talking to me when no one else was in the house. I had visual hallucinations. These entertained my family daily. These hallucinations occurred like clockwork after I took my pain medication. They were worse after the third surgery so I will save the embarrassing stories for that entry.
Four weeks went by before I could lift my head off the pillow. I stayed nauseous all day every day. Again, Doc Duckworth attributed that to the part of the brain that was manipulated.
Week six, I started feeling a little better. I noticed that I was walking normal, well my normal. I still had balance issues. I hadn’t experienced vertigo as I had before the surgery. The stuttering was still gone. I was hopeful. Gradually I was getting stronger. I still hurt but it was doable.
Eventually, I was strong enough to drive. I started work the following August and life continued, until it didn’t…