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.

44 thoughts on “My DBS Surgery, A Stroke of Bad Luck.

    • Julie Baliva says:

      Pete, believe it or not, we were just talking about you again earlier in the week. I told Dom that since we hadn’t heard I thought I would message you today. So sorry to hear of your set back. Praying
      for healing and recovery! You are a strong and determine man and have the greatest wife/warrior by your side. You will make it!

    • Karen Plax says:

      Pete, I read your description of your ordeal struck by your efforts to share this troubling experience with all of us. Your ability to communicate this difficult set of circumstances reminds us of so much of life you have shared. Hopefully as the days pass your body will continue healing and the disturbing effects will disappear. You will be in my thoughts. Karen

  1. Pete and Christine….I had a suspicion that something wasn’t quite right as I was anxiously awaiting an update from you. So as I waited I spoke prayers nealrly every day. Thank you for your words of transparency. Hope my friends and continue to heal.❤️

  2. Dear Pete, Thanks for sharing your thoughts. We’ve faced health challenges, both of us almost died, at least it was at different times. Like you & Christine, it strengthens your bond & love. We are fortunate that we’ve both found our special solemate! Wishing you improved health as your body heals. Love always, Deena & David

  3. Pete, I have full faith in your continued recovery. This unexpected setback will be overcome and you be “right as rain” in no time. Sue and Nickie are praying for you, and I know their prayers have always worked for me.
    It also helps that your married to a saint.

  4. Andre Lieber says:

    I thought about you and your surgery a lot these last couple of weeks. Wish you a swift recovery! Please say hi to everyone around and hope to see you soon. Asuka and the kids will join me in DC on July 25th. Hope we can all meet up in Kansas City later this year. Do good, have fun and be safe!

  5. Good grief, Pete! I thought something was up, but this wasn’t on my list. Glad it’s all done with, and hoping for a full recovery.
    PS we already knew Christine was special❤️

  6. John Gerstle says:

    Pete, the older we get, the more our mortal life is challenged. The beauty is having a myriad of friends all pulling for a warrior in life. Count on me, friend.

  7. Pete, I had been eagerly awaiting your report about the surgery but didn’t anticipate this plot twist. I hope you continue to improve — the brain is a remarkable mystery, isn’t it? Do take care!

  8. Susan B Ross says:

    Oh my goodness Pete! You have had quite the experience. I know it is humbling when one loses some of their functionality! You and Christine are rocks that will surely make the difference while you travel this recovery journey! Patience, love and faith are yours! Hugs and best wishes from John Kirby and me in Bay City Oregon.

  9. Pete, you and Christine remain in my prayers. She’s been so kind to reply to my texts and I truly didn’t suspect that you had this complication! Take care and many wishes for a full recovery.

  10. Lynn Johnson says:

    Pete…..so glad it wasn’t a stroke. You will get through this with your will and determination! I just went through a total hip replacement and developed a blood clot and severe swelling. Like you things that are a low percentage of happening, happened. I have some one who has been there helping me too, I can imagine how grateful you are for Christine. Wishing you all the best and know you are in my prayers!

  11. I probably understand more deeply what Christina has been and is going through after the two and a half decades of dealing with the vagaries of Mary Ann’s Parkinson’s disease. As I have told you before, she refused to even consider the Deep Brain Stimulation surgery. Mary Ann had a stroke, so I have had intimate contact with the recovery process. Christina has much wisdom in allowing time for you to process things for as long as it takes you to complete the task. She is respecting your dignity.

  12. Mary A Day says:

    Thank you for letting all of us peripherals, but concerned, folks know how you are doing. You’ve inspired me to go forward with my own recovery. You are walking miles a day! Wahoo! We have our personal caminos, eh?

  13. Pam Roberts says:

    Wow! Who would ever think that situation would happen. Glad to hear that at least you are out walking around and your speech has improved. Hope good things are in the future for you.

  14. Dear Pete, we humans can be such fragile beings. May God hold you in the palm of his hand. We think of you and Christine often. ❤️ from myself and your lifelong friend.

  15. Connie Jean Johnmeyer says:

    Wow, what an experience you have been having. Best wishes for a successful procedure in July, for no set-backs, and for a rapid recovery. It is so true that we learn and grow so much during/after difficult challenges, but, like you, I’d rather learn some other way or perhaps just not with such an intense challenge.

  16. Jim Strasser says:

    Pete and Christine, I don’t have the words to truly express my best wishes for the two of you, but I do wish you the best. Life is fragile and we all must appreciate what is before us and I believe that you two understand that. Calm and peace to you

  17. Oh my gosh… I have been wondering how you are doing and was going to try to figure out how to contact you…and your FB came up with how it has been…. Sounds like they are going ahead with everything, anyway… The body really is miraculous and be assured many friends and family are praying for your complete recovery from both the “stroke” and the tremor surgery!! Love to you both!!

  18. Wow. I am confident that you will beat this down like it was a wet walk along a long wall. Steady, keep at it. The sun also rises.

  19. I haven’t talked to you in so long but I am so glad to hear that even though you went through something your still ok and doing good.

  20. I’m so sorry you had a rough time. Physical pain we have learned to deal with, but there is no true description for individual anxiety. It is horrible and scary. Thank you for allowing me to tag along on all your journeys. Good Health and Good Cheer to you!

  21. Stuart D. Wieland says:

    Pete, hoping for your speedy recovery from this ordeal. “This too shall pass.” You’ll be back in action soon.

  22. Ruth Harrison says:

    Thank you for sharing this with us. I know now that I will endure not being able to write, spill food and do what I can to live alone and get by with the annoying part of ET. you will get better and I wish you a long and healthy life. Thank you again.

  23. Larry Gulley says:

    Standing by in Clark, Pete. I hope your trajectory towards health continues despite your setback. Your courage will be rewarded, I trust!

  24. Pete Schloss says:

    I wish that I could thank each and every one of you separately for your kind thoughts, words, and prayers. Unfortunately, I cannot, and I trust to your understanding. To all of you, thank you from the bottom of my heart and on behalf of Christine as well. I have read every comment and I am aware of every reaction to my post.
    It is remarkable to me that in the two days that it has been visible to the public. It has been read by over 1500 folks in at least 20 countries. I’m amazed and gratified.
    Pete Schloss

  25. Diane Richardson says:

    Pete, I’m so glad to hear that you’re on the mend. You and Christine have been in my thoughts all month! Prayers, always! 🫶🏻

  26. Morning Pete…Glad you are getting better ,.Enjoyed talking to you and Christine at the grocery store a few days ago . Recovery looks good on you. Keep on Rockin.

What Do You Think?