Since my last posting nearly 3 weeks ago, I have been struggling with a lot of different feelings that I couldn't name. Next Wednesday, 11/24/10, I will have the lead that goes into the left side of my brain removed and replaced. My neurosurgeon says she does about one of these procedures per year. Today I decided the word that works best to describe my feelings is "trepidation."
| trepidation (ˌtrɛpɪˈdeɪʃən) | |
| — n | |
| 1. | a state of fear or anxiety |
| 2. | a condition of quaking or palpitation, esp one caused by anxiety |
Until I checked the dicionary to confirm the definition, I had not made the association with quaking and palpitations, two sensations that are quite common to us Parkies. I'm not sure if I'm trembling, but I do know that I am definitely anxious. Not about my neurosurgeon, but about what she cannot control.
Data that are available to the average consumer or patient are few and far between so I haven't been able to find concrete info on the incidence of bleeding in the brain (intracranial hemorrhage) during or after removal of a DBS lead from the brain. I am anxious about the lack of patient-oriented info, but much more so about its actual occurrence during my surgery. When there is a bleed deep in the brain where the subthalamic nucleus is, it is my understanding that all the surgical team can do is make the patient do all the usual neuro "party tricks" to check for signs that might indicate bleeding. If they need to, they can do some imaging, but there is really nothing they can do to stop the bleeding. The surgery would stop and the patient would hopefully recover quickly and want to schedule the completion of the surgery at a later time.
The sheer number of journal abstracts (383 hits on scholar.google.com when searching "deep brain stimulation surgery hardware-related complications") about hardware-related complications of DBS has not done much to calm my fears. These types of complications are probably much more common than we know. Perhaps it is best that nearly all of these articles are available by subscription only. After all, if we patients become informed, then we start demanding things like surgical guidelines and comprehensible information about surgical complications and infection rates and a publicly accessible database of adverse events. Then, to paraphrase Judd Nelson in the movie "The Breakfast Club," "I'll speak up ... we'll all speak up ... it'll be anarchy!" (Did I mention that I'm feeling more sarcastic than usual and a little cynical, too?)
I know that I need to spend the next six days changing my attitude to one that is hopeful, upbeat and joyful with the knowledge that I am blessed with so many family members and friends who care for me. And I need to accept help when they offer it.
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