Written July 18, 2023. At Kansas City, Missouri.
For those “tuning in” for the first time my previous posts recap what brought me to this point:
I did not come to the decision to undergo this procedure easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:
I wrote in greater detail the specifics about the DBS surgical procedure. Here is a link to that post:
The day before my scheduled surgery I wrote a post that was both a conclusion to our travels in England and my pre-surgery update. Little did I know how prophetic the title to that piece was to be:
My second surgery occurred on June 16th, but on June 7th I suffered a brain bleed with symptoms that mimicked a stroke.
July 17th was my appointment to activate the controller that had been implanted in my chest on June 16th. 3 hours were set aside in the University of Kansas neurology clinic for the Neurology DBS Coordinator to work through identifying the setting that would give maximum relief from my life-long essential tremors yet avoid needless side-effects.
On July 18th I met with the neurosurgeon, Jennifer Chang, MD for a detailed post-operative examination and discussion of my condition.
The appointment on the 17th was with Alyvia Elliott, RN, BSN, the Neurology DBS Coordinator, and took every bit of the 3 hours that had been scheduled. She methodically explored various settings. Some of the settings evoked tingling in my right hand and right side of my tongue. Others caused my speech to thicken. None seemed to impact my gait. Alyvia successfully found at least 2 settings which gave me the ability to hold a full glass of water in my right hand and bring it to my lips without shaking its contents onto the three of us. Mind you, THAT is an AMAZING accomplishment in my world and something I have not been able to do for more than 50 of my 71 years.
Unfortunately, that is not the end of that story. The physical impact of the repeated charging of the brain implant was exhausting. Moreover, the anxiety that I experienced weeks earlier was slowly building over the course of the appointment and threatened to again become “crushing”. I could feel the air slowly escape the room and leave me to figuratively suffocate.
We took a break. Ms. Elliott was concerned and suggested we suspend further efforts. At her recommendation I took a walk with Christine to regain my center. It helped, but I was shaken. She would be discussing in detail the results with my neurosurgeon and neurologists.
On July 18th Dr. Chang met with me and Christine. She allowed that a longer delay for the activation of my DBS controller had been considered due to the brain bleed, however it was thought that since the bleed had resolved and my residual symptoms were minimal it was appropriate to proceed along the original schedule.
I had remarked to Alyvia Elliott on the 17th and to Dr. Chang on the 18th that I was already experiencing a major improvement of my tremors, post-surgery and post brain bleed. The doctor posited that a “honeymoon period” of post-surgical tremor reduction is common. It is a temporary result of the minimal ablation to the thalamus that results from the insertion of the non-activated electrical stimulator in the brain. However, those benefits would have usually disappeared by now.
She further theorized that the additional impact of the brain bleed in the thalamus had extended and enhanced this effect, much as ablation through Focused Ultrasound might. She believes that the significant tremor reduction I am experiencing is still temporary. I am scheduled to see her again in September for another follow-up. For now, activation of the DBS unit is on hold pending the elimination of the last residual symptoms of the brain bleed. These consist of slight numbness on the right side of my tongue, and an occasional slurring of a word, which is barely noticeable even to my wife.
She also hypothesized that my anxiety might not relate to the brain bleed, but rather is a manifestation of my subconscious fears of the procedure and the complications that I have experienced. This is a possibility that I now recognize. She suggests that prior to an appointment to again activate the DBS controller I take a dose of the antianxiety medication prescribed on June 14th. I have not used the medication over the last 2 weeks, but I find her suggestion to be spot-on.
So… I have been so focused on the “dark cloud” of the post-surgery complications that I have failed to appreciate the “silver lining” benefits that I have already experienced, whether they are temporary or long term.
The things that I have truly come to appreciate are: The kind thoughts, words, and prayers from my many friends both here and abroad; The helpful and attentive professionalism of the physicians and staff at KU Medical Center; The love and caring of my children, grandchildren… And most of all my wife of 46 years, Christine.
Peace Everyone. Pete
PS. I am increasingly more comfortable out in public and engaging in selective social activities. I am now cleared to resume my exercise routine which consists of yoga, stationary cycling, weight training, and walking 5 miles a day on average. Communication is vastly improved, and I again appreciate in advance the thoughts, wishes, and prayers of my friends and family. I hope all will understand that I cannot directly respond to each of you. A general “Thank You” will still have to do for now. Pete