This article is about the dangers of doctors not listening to their patients. It is about my own experience with a doctor who refuse to listen and treat me and how his refusal to see me, turned a very bad situation for me, into a nightmare. His neglect made me much sicker than I already was.
When I found out that I was going to need a shunt, I was anything but happy. I have a rare brain cyst, and my cerebral spinal fluid just wouldn’t drain properly without one. A shunt, to me, meant that I would no longer have the control over my body that I used to have. I would now need someone, a neurosurgeon, to permanently follow me so that he could adjust my shunt as needed to keep me feeling okay.
I lived in Albuquerque, New Mexico, and my surgeon was in Phoenix, which made having a shunt even trickier. I would now need a neurosurgeon in Albuquerque to follow me. Doctors do not always like taking on someone else’s patient, so I felt very fortunate to have found the chief of neurosurgery at one of the local University hospitals in Albuquerque who was willing to take me on as a patient. But that fortune would soon turn into a nightmare that I still live today, two years later.
I continued to have problems with my shunt months after it was surgically implanted. I continued to have problems with pressure building in my head, due to the large cyst that I had on my brain. I saw the chief of neurosurgery many times trying to get this resolved. My shunt is a programmable one, meaning that it can be adjusted to drain more or less fluid, whatever is needed. I was seeing the chief on a regular basis, never being able to get my pressure equalized so that I could live comfortably. I was concerned that despite having the shunt drain more fluid, I could still not shake the pressure building in my head. I begged the chief to get in touch with my surgeon in Phoenix, to let him know what was going on. He refused. He told me he did not need to. I believed him and continued to see him knowing that my options for finding a new neurosurgeon in such a small town were very limited.
The chief continued to lower my pressure to give me relief, all while not following the normal protocol of x-raying the valve after an adjustment, on a regular basis. Many times I left the hospital not knowing where my pressure was set. Finally, in the spring of 2006, I began to feel a little better. My pressure was set at one of the lower settings to drain quite a bit of fluid, and I felt human again, for the first time in months. The chief talked to my husband and I about too low of pressure on the brain and how it can cause brain sagging, and this could be dangerous. But I was feeling good. It was hard to imagine having problems with my brain sagging. Then, just a couple of months later, I began to have a pain on top of my head. Again, I made the trip to the office and saw the chief. He told me it was nothing, he did not order any scans, and he did nothing but touch his hand to the top of my head and send me home. Again, I believed him that everything was okay, and normal.