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:

“The Decision”

I wrote in greater detail the specifics about the DBS surgical procedure. Here is a link to that post:

“My DBS Surgery”

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:

“Shake, Rattle, and Roll (the dice) Surgery”

My second surgery occurred on June 16^th, but on June 7^th I suffered a brain bleed with symptoms that mimicked a stroke.

“My DBS Surgery, A Stroke of Bad Luck.”

July 17^th was my appointment to activate the controller that had been implanted in my chest on June 16^th. 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 18^th I met with the neurosurgeon, Jennifer Chang, MD for a detailed post-operative examination and discussion of my condition.

The appointment on the 17^th 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 18^th 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 17^th and to Dr. Chang on the 18^th 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 14^th. 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

 

Written July 1, 2023. At Kansas City, Missouri.

On June 2nd, I underwent DBS surgery at the University of Kansas Medical Center. My recovery went amazingly well, until it didn’t. On June 7th Christine was rushing me back to the hospital. I was suffering all the classic symptoms of a stroke.

But I’m getting ahead of myself.

For those “tuning in” for the first time here is a recap of 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:

“The Decision”

I wrote in greater detail the specifics about the DBS surgical procedure. Here is a link to that post:

“My DBS Surgery”

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:

“Shake, Rattle, and Roll (the dice) Surgery”

The big event began the morning of June 2nd when I reported at 5:45 a.m. for Deep Brain Stimulation surgery (DBS). Neurosurgeon, Jennifer Chang, MD, would bore a small hole (about the size of coin) through the left upper area of my skull. My head would be immobilized while she inserts a tiny electrical implant into the left thalamus of my brain.

All was quiet in the pre surgery waiting room. Pre surgical prep went smoothly. I was relaxed and perhaps even confident. Some brief testing established a baseline against which my tremors could be judged during the surgery. I attempted to draw a straight line, a spiral, and legibly sign my name. “Attempt” aptly describes the effort.

Under anesthesia my head was securely immobilized, and the actual insertion of the DBS device was under way. At a point in the process I was brought to consciousness. I briefly struggled against my head restraint until my thoughts cleared and I drew focus upon the surgical staff. The tiny emitter which was now centered in the thalamus of my brain was activated.  

Various settings were tried until the doctor was satisfied. I was asked to again draw some straight lines, a spiral, and legibly sign my name. Even in the foggy state of my recollection I was amazed that there were no tremors! The doctor reported to my wife and daughter that I had every reason to anticipate an excellent, tremor free, outcome. Post-Op recovery was made all the more tolerable by my nurse.

I spent the night in the hospital for observation. Pain was manageable. The surgical site was not pretty, but hair does grow back. I was discharged from the hospital the following day.

With the doctor’s instructions that I was to significantly limit my activities, I began the process of recuperation. Tylenol was all that I needed to manage the pain. The most inconvenient thing was being unable to wash my hair for the first five days. All was going remarkably well, or so I thought.

On the afternoon of June 7th, I began experiencing confusion, numbness and tingling on the right side of my face, and an inability to make my right hand respond to my intentions. I was rapidly losing the ability to speak. I did not need words to communicate my distress to Christine. In a few minutes I was in the car and she was rushing me back to the hospital. Fortunately, it’s only about a 10-minute drive. It would have taken longer for us to wait for an ambulance.

The emergency room appeared at capacity; however, staff quickly assessed my need for immediate attention. I was admitted quickly, and shortly thereafter I underwent a CAT scan. I was not suffering from a stroke, although the symptoms mimicked one. Instead, I was experiencing a brain bleed. This is a rare complication and more so in that it occurred days after the surgery. I remained in the hospital overnight and a second CAT scan confirmed that I was stable. The prognosis for complete recovery was excellent, but it would be a matter of weeks for that to occur. In the meantime, the second surgery remained scheduled for June 16th.

Whether a byproduct of the brain bleed or acute situational anxiety, I was in a panic. I have never suffered anxiety at such a level as this. I was prescribed Xanax which did bring some relief from the overwhelming feeling of doom that surrounded me.

On June 16th the controller was inserted into my chest and wires were routed from the original surgical site down my neck to the controller. This was an outpatient procedure. The controller is scheduled to be activated on July 17th.

My speech has mostly returned. I still have some difficulty finding words and clearly articulating those words. There is some residual slurring. Initially, it was a challenge to walk around the block. I am up to about two miles every morning and I no longer drag my right foot. Hiking across England just a few months ago seems like a distant dream.

I am still prone to the occasional moments of anxiety. Fortunately, it is nothing like what I initially experienced. I am no longer dependent upon Xanax for relief. I have lost 12 pounds as the result of a loss of appetite. I would have much rather lost that weight through healthy eating and exercise!

If there is a “silver lining” to the storm clouds of this experience it is a deeper appreciation for the assistance and patience of my wife, Christine. I cannot imagine these last few weeks without her care.

A second silver lining can perhaps be found in the realization of how fragile our abilities are. Writing this post has taken at least twice as long as it would have in the past. I have a newfound appreciation and empathy for those who suffer from anxiety and stroke. The anxiety is not related to rational considerations. It is vague, undefinable, and yet crushing.

A couple of years ago a lifelong friend suffered a stroke. He tried to explain how his thoughts could not be brought into words. In this too I have a newfound appreciation. For days after I suffered the brain bleed, I could think concepts, I could see the concepts, and understand the concepts. Try as I might, I could not communicate the concepts. It is a feeling both frustrating and helpless. Here again my wife Christine displayed a gift of understanding. Rather than put words into my mouth, she would patiently wait for me to do my best to explain what it was that I was trying to say.

As I said in my prior post: “The likelihood of the “unthinkable” occurring is less than 1%. However, this is major surgery and unlike my arm, which is an arm, or my leg, which is a leg, my brain is the essence of me.”

Christine and I have had a real wake up call. We have experienced a glimpse into disability that we were not prepared for.

Peace Everyone. Pete

PS. I am not yet entirely comfortable out in public or engaging in social activities. Communication continues to be difficult, but nothing like it was a couple of weeks ago. I appreciate in advance the thoughts, wishes, and prayers of my friends and family. I hope all will understand that I cannot yet engage in deep conversations. “Thank You” will just have to do for now.