“Whatever you do, don’t have any more surgery done.”
“But I’m progressing, and rapidly losing my ability to balance and control my extremities.”
Dr. Mokri at the Mayo Clinic said that my MRI was fine, my vestibular nerve testing was fine, therefore I was fine, and recommended that I go to “Pain Camp”. I wanted to hurt him. He also said that he believed there was a strong psychological component to my symptoms. I wasn’t sure if his conclusions were based on the atypical presentation of my ailments, or because I had a pink ukulele dangling from my walker next to a handpuppet of a pheonix. Crazy people get sick too.
All we had to go on was a bubble. A bubble of mystery fluid that was hanging out behind my brain on an MRI. Ever since my fusion was redone so that I could open my mouth again I had felt like there was a thumb pushing into my brain, like a hitchhiker trying to take a ride into my mind. Always there….it pressed on my sanity. Every step I took…push….push…push….every movement of my head….even when I wasn’t moving it was there pressing on my patience. It hurt immensely, but not in the typical way we feel pain…it was that nails on a chalkboard sensation of “Dear god make it stop”. I am an atheist, and it takes an awful lot to get one of us to cry that in our heads.
They called it a “pseudomeningocele”. They said they were common after chiari surgery, and that nature would take its course and it would absorb within the year. A year and a half after its debut appearance on my MRI, the bubble was slightly bigger. In that time I lost the ability to walk up stairs, bend down, balance without difficulty, open jars, or lift anything heavier than 3 lbs. None of these were symptoms of a pseudomenigocele, nor were they symptoms of chiari, or even ehlers danlos syndrome for that matter. They were however symptoms of a cerebral spinal fluid leak. Supposedly most CSF leaks heal on their own, so I was advised not to seek treatment for it, and refused diagnostic gadolinium testing by the Mayo Clinic. The headaches had become debilitating, and pain medication was not successful in treating them. Caffeine however had a pronounced analgesic effect, so I began to swallow espresso beans like pills to treat the pain, fatigue, and blood pressure irregularities. The spinning was drilling me into the ground. It felt like I was getting weaker by the week:
“Common after most Chiari surgery maybe” Dr. Bolognese spoke in a thick Italian accent. His name means “sauce” in Italian and in America sounds like the hybrid of bologna with mayonnaise.
“But I have never had a pseudomeningeoceole happen before with my surgeries…so this is…very disappointing.”
I smiled at him with the mouth he had given back to me
“Better luck next time”
He agreed to open up my brain exploratorily to see just what demons were hiding in there. I knew what demons could be unleashed from such a thing. He could find nothing, he could find something, he could make something worse, he could make it better, her could kill me, he could save my life. Life is the ultimate thrill to gamble.
The night before the surgery I recorded a song with Jesse in our glitzy New York hotel room. He held me as I cried, and sung me Freddie Mercury’s “Love of My Life” until my nerves settled down into Nirvana. Sedated and sublime, I then told him:
“You are not the love of my life, for I met you after it ended, but you are the love of my death, and all that is thereafter.”
http://www.youtube.com/greatneckband#p/u/1/HesVlGhrdmY and that’s how that was made. It’s a quick-slippery slop-job recording, because we were holding onto the belief we’d be able to re-record it better someday. We would make it through.
Jesse had written an acoustic ballad called “Wake-up” that he wanted to play for me as soon as I came down off the anesthesia. I told him I might not even remember the first day after brain surgery, so he had my mother videotape him playing it for me instead. Unfortunately I do remember waking up, I was alone, and had a intubation tube in my mouth stealing away my voluntary breath. My jaw was snakelike dislodged and I kept gagging on the plastic edges of the device. I was like that for three hours, so that entire time I played his song in my head. Finally a nurse realized that I was awake and told me to nod my head if I understood her (she did not know my head was fused solid into place.) I tried to show her with my hands but they were strapped down to the bed (so you can’t pull the tube out yourself) When they eventually pulled it out, I vomited mucus and smiled…sideways.
My head felt like Athena and Chuck Norris had sado-masochisticly fucked their way out of my skull. My left leg was throbbing as well, and I wondered what kind of phantom nerve phenomenon that was from. I looked at the clock, it was 3 PM. Either the surgery had lasted an hour, or it was the next day, and judging by my exploded head I concluded the latter. Finally I saw a familiar face, I was almost as happy to see Doctor Bolognese. as I was my own mother.
“It was…complicated. But anatomically…I’m happy now.”
I found out later that the bony “struts” they had put in to hold in my revised cranio-cervical fusion had overgrown…causing the fake bone to grow and calcify directly over and into my brain. Taking a titanium hardware wire with it, about the size of a thumb, it was piercing into my cerebellum scratching at the surrounding dura and causing leak after leak to occur. Dr. Bolognese removed the frankenmess: scraped off my brain, drilled my skull from the inside out to reshape it correctly, and put on a new dura patch using a muscle-graft from my left thigh. Thus the bubble was burst: it was pooling spinal fluid from a tattered dura, caused by a fusion fix-it surgery, caused by a fusion fucked-job. BAD PUN ALERT…it had gone “totally haywire”. The best part is- none of this EVER showed up on my MRI. If I had listened to the experts at the Mayo Clinic, I’d would most certainly be facing inevitable paralysis and possible death. Like my friend Steve said
“Mayo is for sandwiches, not for medical advice”
Currently I’m in recovery, my symptoms are still all present, but brains don’t heal as fast as we need them to.
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