After about a year's worth of discussion and consideration, my husband, Walt, had his first Deep Brain Stimulation (DBS) procedure 4 days ago. We'd like to share his journey with you – in real time, so to speak, as this ongoing process continues. Surgery #1 – Awake surgery with an electrode implanted into the left side of Walt's brain; Surgery #2 – One week later, a repeat of #1, but on the right side of his brain, and #3, two weeks later (due to the Thanksgiving holiday week), the pacemaker-like device will be implanted under his collarbone, under general anesthesia.
First – some background – Walt is 65 years old, and was diagnosed with Parkinson's Disease at Mayo in 2012, 6 years ago (gasp! I thought it was only 4 years or so…Time flies when you're having fun!) His symptoms have progressed slowly (I think), but they have indeed progressed. The symptom that led to Walt's diagnosis was a slight tremor in his left hand and then left foot.When he was diagnosed (6 months after the initial neurology appointment) his tremor had increased, and other symptoms were noted. His left arm no longer swung naturally when he walked; he had lost most or all sense of smell years earlier; his left hand no longer gripped things with the same force as his right.
Additionally, I should mention that we initially were totally stunned and befuddled by the diagnosis. We were overwhelmed with anxiety and dread, envisioning the worst kinds of rapid progression of this incurable disease. Walt has always been a fit, active, strong man – who never shied away from hard work.He has worked his whole life in the automotive body repair industry, focusing on fiberglass repair over the last 30 years.
(Yes – we have often thought that his constant exposure to fumes from solvents and other chemicals, despite taking proper safety precautions, may have played a part in his developing PD.) Whether he was helping someone move, clearing and landscaping our property, moving rocks, or chopping wood – Walt never stopped working until the job – whatever it was – was done. With PD, came increasing levels of fatigue and pain, which not only affected him physically, but added significantly to his despondency and ultimately, his increasing depression. His facial expressions decreased – a symptom we unaware of, until our son said to me that he didn't think his Dad was very interested in what they talked about. I realized then, that other people's interactions with Walt were likely affected, as well. He complained of difficulty focusing and concentrating, and of needing multiple substantial naps each day. He uses CPAP to help him get a good night's rest – not sure it helps. He wakes in the morning, feeling fatigued.
Little by little, we were able to once again appreciate the good things in life. We could see that in the greater scheme of things, Walt was still able to function independently. He could walk, work, play, drive, and enjoy gatherings of family and friends. As we watched our son and daughter thrive and succeed in the lives and families they are building and with the arrival of grandchildren, we felt joy again and were able to happily anticipate the future – a part of life we were missing for a couple of sad, lonely, dark years.
**Note that I repeatedly use the pronoun "we." Walt and I have been married 38 years this month (our anniversary is the same day the 3rd part of the DBS is scheduled), and although I do not have PD, my guy does. We are in this together, and I have found that when he is down, so am I. When he is so tired that he despairs, so do I. Life is changed – but by no means destroyed. I say this on a "good day," when I can feel that life is good. Yesterday, I felt differently, and that was not the emotion at the front of my brain. Like everyone else, well or ill, we are better on some days and not so great on others.**
About 3 years ago, Walt's neurologist mentioned DBS to Walt, who immediately responded, "No – I'm not ready for that!" We had, very early on, attended a presentation about DBS at a local PD Support Group meeting. It seemed at that time, to Walt, to be a bit of overkill. Drill into his brain? Not likely. About a year ago, Dr. Mehta mentioned it again. Over time, we had come to like, respect, and trust Dr. Mehta completely, and this time Walt was not so quick to dismiss the idea. We listened carefully as Dr. Mehta explained that not everyone would be a candidate for DBS, and that a considerable amount of testing would have to be done to find a patient eligible for this procedure. He said that there is a "window" for DBS to be helpful and for a patient to be eligible, and that there could be backup/delay in scheduling some of the tests – so it might be a good thing to get some of the tests scheduled. The DBS could be beneficial only as long as his meds helped him. Among other things, if that window closed, DBS would not be an option.
We came to understand that DBS is not, of course, a cure for PD, but as Walt's symptoms had progressed and worsened, they made daily activities more difficult and he was more easily fatigued. His tremor – on his left side – had become more pronounced and he felt weaker than ever on his left side. Luckily, Walt is right-handed, but it was easy to feel that his tremor and weakness was impacting his right-side function too. It also seemed that his increased dosage of Carbidopa-Levodopa was contributing to increasing dyskenesia and stomach upset, so the potential to decrease his medications was more and more attractive.
Last Spring we agreed that testing should be scheduled – which would allow Walt to keep his options open, and to make whichever decision he chose. The first testing scheduled, before all the others, was to be a Neuro-Psych exam. This was of concern to us due to the fact that Walt had, on several occasions over the past 3 years, had periods of confusion and disorientation. One time, he was even hospitalized at Mayo while they tried to figure out what was going on. Happily, we had been advised that Walt was not experiencing dementia, and that his confusion seemed unrelated to PD. No one on his medical team was able to pinpoint the cause of these brief periods of confusion. Walt and I thought that maybe he had not consistently taken his medications – specifically Zoloft, an SSRI – and that it was the cause I believe that if Walt had not "passed" the Neuro-Psych evaluation, no further testing for DBS would be scheduled. I have only just now read in some of the DBS literature that after taking Sinemet for a while, and/or after dosage increases, it may cause "periods of confusion."
After the Neuro-Psych testing results came in, during the summer Walt was scheduled for various tests and appointments:
• Speech evaluation and assessment;
• Swallow evaluation and testing;
• qEEG (Brain-mapping/EEG)
• DBS Profile appointment with the Nurse on Dr. Mehta's DBS Team. This extensive exam was recorded, and included various activities before, and then after Walt took his meds, as well as assessment of Walt as a candidate for DBS. This would be followed by her report at the next DBS conference, and decision by the DBS Team; and, finally,
• Meeting and consult with the nurse and neurosurgeon, Dr. Lyons.
Through the entire process, our questions were welcomed and answered, and we made the decision to ask that Walt be scheduled for bilateral DBS.
Before I go on (and on), I have to say this: Walt is not afraid of pain. Over the last 10 years he has had extensive dental work, 2 knee replacements, 2 carpal tunnel surgeries, a quadruple bypass, a pacemaker implanted, a concussion and broken collarbone after a fall from a roof-level ladder, and a hand vs table saw accident resulting in surgery. His recuperation and recovery have always appeared effortless and quick. He has never liked or needed narcotic pain meds after the first few post-surgery hours. If he required physical therapy, he was always a rock star about it, and in some cases he used his affected limb as soon as he was able – so he never even needed to go to PT. His attitude has always been, "It is what it is."
We knew – KNEW – that DBS at Mayo was going to be "awake surgery." But somehow, we were in denial, or not totally aware of how traumatic and/or painful Walt might find it to be conscious and aware while the surgeon drilled through his skull and inserted an electrode into his brain. The patient needs to be conscious in order to respond to the doctors by moving what they ask him to move, the way they ask him to move it. while the surgery is in process. This ensures that the lead is placed properly to help with the PD symptoms.
Dr. Lyons met with us while Walt was in Recovery, and told us that Walt had tolerated the surgery quite well; that Dr. Mehta was very pleased by the way Walt responded during surgery; and that they are confident the DBS will help Walt . Our daughter (a nurse at Mayo) and I were shocked when we first saw him in Recovery. He was conscious – he had not been under general anesthesia – but seemed very dazed and confused. And freaked out. He told us that when the procedure started, he actually dozed off, possibly, in part, due to whatever they gave him as light sedation or local anesthesia for the "installation" of the head apparatus, a frame, which was secured to his skull by 4 pins. He woke, apparently, as they finished positioning and pinning the frame to his head. He asked if they were finished, and they said they were. Walt says he was delighted to know that it had not been a terrible ordeal, and that he had essentially slept through the whole thing. He was taken for an MRI, and returned to the operating room, where he realized, to his dismay, that they were not done with him – and the worst was yet to come. Walt found it difficult to say much about having a burr hole drilled into the top of his skull. He said it seemed like it lasted forever, that it was painful, and that the sound of the drill was horrifying. Through the hole, an electrode was inserted into his brain, as Dr. Mehta asked Walt to make certain movements and follow some directions, which allowed him to ensure the electrode placement was correct. The incision on the left top of Walt's head had been closed with staples and was covered with a bandage.
In Recovery, Walt was distraught, complained of head pain, and he was clearly scared – all unusual reactions for him. In the hours after the surgery, once Walt was in his room, he complained continually about the pain, which was distinctly unusual for him. Depending on who we spoke with – any of the nurses or doctors who came into his room – pain was typical or severe discomfort was unusual. We could see that there was some swelling around the incision, and as the hours went by, the swelling expanded to his forehead. I didn't really understand what this all felt like, but Walt said his head felt like a bag of potato chips, about to explode. With his usual stoic manner, he refused offers of meds to help with the pain for several hours. He waited until his pain was really bad – and as a result, it took longer than it should have, to get it under control.
By the next day, Walt's constant refrain was "How am I going to do this again in one week?" We truly feared that he would refuse to return for the next part of the procedure – when the electrode would be implanted in the right side of his head. He was discharged the day after his surgery, with a prescription for pain meds.
For three days after getting home, Walt was really tired, slept a lot, took pain meds at least once each day, and was alternatively anxious and depressed, and resistant to the idea of returning as scheduled for #2. Happily, by Day 4, Walt turned the corner, found that Tylenol helped with the residual headache he had, and he no longer needed pain meds. His moods returned to normal, he still took lots of naps, and he intends to return to Mayo for Surgery #2 in 2 days (although he doesn't want to talk about it much).
I think that although we knew what the surgery entailed, we were "allowed" to minimize the expected discomfort in our minds. Maybe the amount of pain Walt experienced was, indeed, atypical, but I can't help but feel that he was blind-sided by the impact of the "awake" part of the process, and we wish someone had made sure he understood.
At this point, we trust the doctors' expectations that DBS will benefit Walt. Feel free to ask us any questions you might have, and we will keep you updated as this journey continues…..