Deep Brain Stimulation (DBS) for Parkinson's

Posted by Maxine @maxaz1, Nov 13, 2018

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;
• MRI
• qEEG (Brain-mapping/EEG)
• ECG,
• 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…..

@hopeful33250

@maxaz1
Hello Maxine,
I was thinking about Walt and wondering how Stage 3 went. I hope all went well and his battery pack is in place without causing too much discomfort.

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@hopeful33250 – Thank you, Teresa. I meant to post an update sooner. All went well. The third photo is the last incision, where they went in to pull down the wires attached to the electrodes in his brain, through his neck, around to the battery pack they implanted under his collarbone. He was under general anesthesia for this procedure – done as outpatient surgery. There are 17 staples holding the incision closed. The first 2 incisions – through his skull – are barely visible now. Although these photos look (to me, anyway) significantly disruptive, they don't seem to bother Walt. Right now Walt is down in his shop doing metal work for the holiday gifts he is making this year. His appointments for programming and activating the electrodes in his brain are set for 12/17 and 12/19 at Mayo. A little side note – his gifts to family and friends this year are identical home decor items. He is cutting letters from metal and welding them together to say:"HOPE."

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@maxaz1

@hopeful33250 – Thank you, Teresa. I meant to post an update sooner. All went well. The third photo is the last incision, where they went in to pull down the wires attached to the electrodes in his brain, through his neck, around to the battery pack they implanted under his collarbone. He was under general anesthesia for this procedure – done as outpatient surgery. There are 17 staples holding the incision closed. The first 2 incisions – through his skull – are barely visible now. Although these photos look (to me, anyway) significantly disruptive, they don't seem to bother Walt. Right now Walt is down in his shop doing metal work for the holiday gifts he is making this year. His appointments for programming and activating the electrodes in his brain are set for 12/17 and 12/19 at Mayo. A little side note – his gifts to family and friends this year are identical home decor items. He is cutting letters from metal and welding them together to say:"HOPE."

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Hello Maxine,

Love the idea of giving gifts of "Hope." I'm glad to hear that Walt is comfortable and doing so well. I have known of many people with DBS and the activating and programming of the electrodes are where the results of the procedures display their worth.

Until the electrodes have been activated and programmed, does Walt still take the oral PD meds?

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Yes. No change in meds yet. It's interesting, though….Although he's been told not to anticipate any changes before this is all activated, I see a difference in him. His energy level has increased, his level of confidence is more apparent, he is much more talkative and expressive than he was a month ago.

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@maxaz1 That is interesting, Maxine, wonder if the aspect of hope has anything to do with the improvement?

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Hello @maxaz1 and Walt,

I was just thinking about Walt's activating and programming appointments this month. How did that go? Is he noticing any change in his symptoms yet?

Best wishes to you both as you look forward to Christmas and a new year bright with Hope!

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Thank you for your good wishes – and Happy New Year to all! Walt was, indeed, scheduled for DBS activation and programming mid-December. But when he showed up for the appointment, he had zero symptoms. None. He was moving and talking and smiling like he never had PD, despite the fact that he had stopped taking PD meds about a week earlier.. The DBS Team and Dr Mehta agreed that there was no point/no way to program his DBS when he had no baseline symptoms. They called it a "honeymoon period" and/or a "meds washout period," and said that it's not unheard of – and that he should go home, not take meds until symptoms returned, and enjoy the symptom-free time. After about 1-2 weeks, symptoms began returning, so Walt was instructed to re-start his meds to control symptoms, and that he would be activated on 1/14 and 16. Since his symptoms returned at a lower level than prior tot he surgery, Walt chose to take his Carbidopa-Levodopa dosage only once in the day, rather than 5-6 times per day. So now, it's done. And it's unbelievable. Monday and Wednesday this week, the DBS Team at Mayo activated and programmed his hardware (the pacemaker-like controller and electrodes in the left and right sides of his brain). He had stopped taking Parkinson's medications, so it was exciting and magical to see his tremors disappear! We are so very grateful to the doctors who suggested and encouraged DBS, and to the medical professionals who made it happen and helped along the way. Walt's neurologist was delighted with the results, and said "This may be the best DBS result I have ever seen!" We are grateful to all who supported him with love, good wishes, prayers, and encouragement during what was, at times, difficult. And – of course – Kudos to Walt – his determination, courage, hope and strength carried him through.

Walt knows that this is not a cure – but more like a "re-set," and that eventually, symptoms will reappear and progress. But for now, knowing that the DBS can be bumped up to address emerging symptoms, and that he would be able to begin taking medications again, he plans to enjoy his life, day by day, to the fullest.

Despite the fear he felt, the pain he experienced, and the difficulties that challenged him – Walt says "Would I do it again? In a heartbeat!" (The picture is Walt and our daughter – who was at the appointments with us – in the parking lot as we left Mayo on Wednesday. Happy campers!)

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@maxaz1

Thank you for your good wishes – and Happy New Year to all! Walt was, indeed, scheduled for DBS activation and programming mid-December. But when he showed up for the appointment, he had zero symptoms. None. He was moving and talking and smiling like he never had PD, despite the fact that he had stopped taking PD meds about a week earlier.. The DBS Team and Dr Mehta agreed that there was no point/no way to program his DBS when he had no baseline symptoms. They called it a "honeymoon period" and/or a "meds washout period," and said that it's not unheard of – and that he should go home, not take meds until symptoms returned, and enjoy the symptom-free time. After about 1-2 weeks, symptoms began returning, so Walt was instructed to re-start his meds to control symptoms, and that he would be activated on 1/14 and 16. Since his symptoms returned at a lower level than prior tot he surgery, Walt chose to take his Carbidopa-Levodopa dosage only once in the day, rather than 5-6 times per day. So now, it's done. And it's unbelievable. Monday and Wednesday this week, the DBS Team at Mayo activated and programmed his hardware (the pacemaker-like controller and electrodes in the left and right sides of his brain). He had stopped taking Parkinson's medications, so it was exciting and magical to see his tremors disappear! We are so very grateful to the doctors who suggested and encouraged DBS, and to the medical professionals who made it happen and helped along the way. Walt's neurologist was delighted with the results, and said "This may be the best DBS result I have ever seen!" We are grateful to all who supported him with love, good wishes, prayers, and encouragement during what was, at times, difficult. And – of course – Kudos to Walt – his determination, courage, hope and strength carried him through.

Walt knows that this is not a cure – but more like a "re-set," and that eventually, symptoms will reappear and progress. But for now, knowing that the DBS can be bumped up to address emerging symptoms, and that he would be able to begin taking medications again, he plans to enjoy his life, day by day, to the fullest.

Despite the fear he felt, the pain he experienced, and the difficulties that challenged him – Walt says "Would I do it again? In a heartbeat!" (The picture is Walt and our daughter – who was at the appointments with us – in the parking lot as we left Mayo on Wednesday. Happy campers!)

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Hello @maxaz1 and Walt,

What great news and what a great picture. This sounds like a happy ending to your DBS story. Wishing you all well!

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Maxine @maxaz1, I just read your account of Walt's DBS experience. I am wondering how the programming is going for him, how many times he's needed adjustments and how he is doing. Love the way you tell the "real story" I am scheduled for my DBS at Mayo in Sept. — asleep with the newer Boston Scientific.

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@leftylucy

Maxine @maxaz1, I just read your account of Walt's DBS experience. I am wondering how the programming is going for him, how many times he's needed adjustments and how he is doing. Love the way you tell the "real story" I am scheduled for my DBS at Mayo in Sept. — asleep with the newer Boston Scientific.

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Hello @leftylucy and welcome to Mayo Connect. I'm so pleased that you joined our Parkinson's discussion group. Could you share with us, as you are comfortable doing so, a little about your PD history? For example: how long ago were you diagnosed and what symptoms have led you to consider DBS?

I see that you are planning your procedure at Mayo in Sept. Could you explain more about the "Boston Scientific?"

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@leftylucy

Maxine @maxaz1, I just read your account of Walt's DBS experience. I am wondering how the programming is going for him, how many times he's needed adjustments and how he is doing. Love the way you tell the "real story" I am scheduled for my DBS at Mayo in Sept. — asleep with the newer Boston Scientific.

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Hello @leftylucy! Just saw your question about Walt's DBS. Funny you should ask…..I had not updated or added to his DBS story – but I think this is a good time to do that.

Good news and bad news…. First of all – Walt did amazing with the DBS. The DBS gave him a lot of himself back, and he was feeling pretty good about it. He had a couple of adjustments as his tremors increased, but he was only taking 2 carbidopa levodopa one time a day (as opposed to 2-3 tabs 5-6 times a day), and he loved being off the meds! Although he never let the PD stop him from doing things (he cut wood, carried things, loaded trailers, worked on cars, played with his grandchildren), after DBS surgery, he was willing to do a lot more physically demanding things – Our son took him to Montana for a ski-mobiling trip, he took the grandkids sledding when it snowed here in the mountains, he was more social, he did more driving.

The bad news…..One day in February we were sitting around the table talking with dinner guests, and he bent over. I thought I saw a glint of metal on his head – when I looked more closely, I could see a teeny bit of metal peeking through the recently healed incision where one of the wires had been passed over his skull. I called the neurosurgeon's office, and they said that he should take antibiotics they prescribed, and they would make an appointment for Walt to come in. Since there were no signs of infection, it was not considered an emergency. A few days later, there was more exposed wire, and we called again. The surgeon said it was likely skin erosion – a rare, unexpected development, but not unheard of. We sent photos, and they called to make an appointment. We thought the appointment would be to see the surgeon – or for him to see Walt. When we spoke to the surgeon's nurse, she tried to schedule surgery to "remove the DBS System." That was a shock! She was very matter of fact about it – like it was already decided, and like we already knew that it would all have to be explanted. I refused to schedule surgery until we spoke to the surgeon, and he called a couple of days later. He apologized for his nurse, acknowledging that he should have spoken with us first, rather than the way the nurse told us,, but he said everything had to come out. Once the wire, which was attached to the lead in his brain was exposed, the entire system needed to be removed. After 3 months of healing, Walt could ask about having it re-implanted if he wished. By the time we actually made it in for an appointment a couple of weeks later, there were about 2 inches of wire curving out of Walt's head, and back in. The other side of his head was fine – no sign of erosion – so they did not think there was an allergic reaction involved.There was no pain or discomfort.

On March 21st (his birthday!), at Mayo, he was put under anesthesia, and both leads, wires, and the battery pack were taken out. His tremors and other symptoms returned within a few days, and – frankly – were worse than we remembered seeing them in the past. It was sad. Very sad. Walt is currently back on meds – taking 3 tabs 5-6 times each day, to control his symptoms. The good news is that just this week, Walt saw Dr. Shill, a neurologist at Barrow's Institute of Neurology, the chair of the Dept. After an extensive exam and review of all Walt's DBS-related records, she told us that she would recommend that they implant a DBS system again – that he is a good candidate, and that because they use a different system, and perhaps different techniques, she believes it will work out well for him. They do the surgery as an asleep surgery, for which Walt is very grateful! Their DBS Team will review the case, and put it before Dr. Ponce, the neurosurgeon, and it should be scheduled a few weeks from now.

This whole thing was a complete shock – totally unexpected. So anyone having DBS should know that something like this is a possibility. I am sure it was one of the "risks" of which we were informed, but nonetheless, it was totally unexpected. The reason – for anyone who wonders – for our appointment at Barrow's is not that we fault the Mayo surgeon, but because Mayo does not accept Medicare assignment, and we are billed at 15% over the Medicare accepted rates. The paperwork and record keeping is killing me. Too confusing, and too expensive. Also – the incident with the Mayo surgeon's nurse was not the first time we clashed with her, and I do not wish to deal with her again.

@leftylucy – Best of luck to you. I know you are in good hands, and that the surgery will be amazing for you! Let us know how it all goes!
Maxine

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Hello @maxaz1,

I am so sorry to hear of Walt's problems with the DBS, especially after everything was working so well at first. It sounds like you have both been through a lot of trauma over this. I've known many people who have had DBS and never heard of this erosion problem, it must be rare.

I am very glad that you have found another neurosurgeon who is willing to try again with another method. I hope that all goes well for Walt with this second procedure. Will you let us know when the next DBS attempt is scheduled?

My thoughts and prayers are with you both. I so admire your persistence to find a better quality of life for Walt!

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@hopeful33250

Hello @maxaz1,

I am so sorry to hear of Walt's problems with the DBS, especially after everything was working so well at first. It sounds like you have both been through a lot of trauma over this. I've known many people who have had DBS and never heard of this erosion problem, it must be rare.

I am very glad that you have found another neurosurgeon who is willing to try again with another method. I hope that all goes well for Walt with this second procedure. Will you let us know when the next DBS attempt is scheduled?

My thoughts and prayers are with you both. I so admire your persistence to find a better quality of life for Walt!

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Oh Maxine, I am so sorry to hear about all Walt and you have been through. You two are truly strong and amazing people. You persevere regardless of the situation. I send my thoughts and prayers to you both that Walt’s surgery goes well. Sounds like you have found a great doctor. Take care.

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