I remember being twenty years old, and visited the car mechanics to have a brake job done. In that time I dropped off my car, and had already settled in my mind what was wrong with my car. I knew how much I should pay for the repair, and startled at the conversation I had with the man in the office, white shirt and tie, with a mess of keys hanging from his belt. He looked down a lot, spoke fast, and wanted me to prepare for anything.
He told me as they test parts of my car's braking system, all manner of things could give out....” It could be the , um, the master cylinder.” When I came back, hours later, my simple brake job had jumped up three hundred dollars, and I felt cheated.
One thing I know: cars seem unreliable. I know also that as long as I remain unclear about the operation of my car, the people called upon to repair them would leave me feeling paranoid...
My journey continues. I went to see my neurosurgeon today.
The frustration I based on an expectation. I face my culpability here. Humans have expectations. Borne of the earth, we learn to build, share, love, thrill, and anticipate. I believe that my nature can be found in this. So, though I admit my guilt, I do not feel guilty.
My expectations involve anticipating delays. I expected no answers. I expected that delving into this investigation I would doom myself to a hell of empty answers, years of doctor visits, and limited therapies. I working limited hours at a limited wage in northern California. It is a challenge to want to address this. I would love a broken bone, a breathing problem, anaphylactic shock, scaling skin, or muscle spasms. I want anything where the problem is obvious, the cause is obvious, and the path of discovery is clear cut.
I am not dying here. Some degree of my quality of life is affected, but the fact is I do not know what the price tag is on the adventure ahead. The price tag is the sum of the money spent, the time spent, the comfort lost as it is all weighed against the possibility of improvement or full recovery. I am holding off on any such analysis, as I take the advice of people close to me in my life.
The neurosurgeon came in to see me, and she started asking me lots of questions. She did not think my problems minor, and listened carefully to all my concerns. It is amazing how familiarity bred in my heart a calm that comes from knowing the basis of my doctor's history and practice. I calmed down once I learned she trained at Stanford. I learned that she practiced in San Jose. I learned that she knows, and has worked with every neurosurgeon that has treated me since 1970.
As a part of the education process, I have shared a bit about what hydrocephalus is, and what problems have manifest in the management of my shunt in the past fifteen years. She showed me something that astounded me. In my years since my last shunt revision, my great fear had always been that it would break, and I would experience the inter cranial pressure that forced me into the emergency room over thirteen years ago. She showed me how when she applied pressure to my valve, it stayed depressed, and opened slowly.
She told me that the spaces in my brain, my ventricles, are not only not dilated, but are in fact non-existent. My shunt could drain too well, and could create less pressure than I might need in my head.
She told me calmly that I will see a neurologist first, and have some tests done before she would do the exams she would consider.... No trephaning for dollars today. She said her next investigation will come with adjusting my shunt, and that would involve surgery. From here I will have to keep you posted...
Thank you for reading.