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Maxine
@maxaz1

Posts: 16
Joined: May 26, 2018

Deep Brain Stimulation (DBS)

Posted by @maxaz1, Tue, Nov 13 11:59pm

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…..

REPLY

Hello @maxaz1 and Walt,

I'll certainly be thinking and praying for Walt today. Thank you for that wonderful post about how you arrived at the decision to try DBS. We look forward to hearing more about his journey and the end results of this type of treatment!

I'd like to invite others in our PD discussion group to join you as you share this journey with us!

@chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @pjsammy7 @bobbieingeorgia @gulfer @mojo1965 @brittalisse @ruby7dnj @brittalisse @moso @retairforceman @elizabethbryant @meggotty @ruby7dnj @dianalee @oronogo @melmaury @mariemarie @sainath @susan62 @ruby7dnj @kati612 @tllaes @dianalee @david59 @lsdempsey @pammettee @alistair01 @mzpattilyn @nyparkie

Thank you so much Maxine for what you have written and posted about Walt’s and your experiences with DBS. I have wondered about it. I am 62 and was just diagnosed at the Mayo in September and am very early on in my PD. As Walt, I have always been a VERY active person. I am seeing my neurologist in December for only the second time. I am probably not a candidate for DBS, at least not now, but the Sinemet makes me nauseous and dizzy and frankly I would rather not be on it. What you write about Walt’s experience with DBS makes me wonder if taking pills, even with side effects, is better. I pray that when it is all said and done Walt is doing so much better. I really appreciate your intention to keep those of us on Mayo Connect up to date with Walt’s further progress. I can surely understand the emotions you describe that Walt and you are experiencing. I feel the same. Resolved to fight the disease, being very grateful for a good day, then depressed, fearful and hopeless. I know that I bring my husband down when I am depressed and hopeless and up when I am on the good side of things. The emotional roller coaster is hard on everyone. I wish Walt and you the VERY best. Take care.

@susan62

Thank you so much Maxine for what you have written and posted about Walt’s and your experiences with DBS. I have wondered about it. I am 62 and was just diagnosed at the Mayo in September and am very early on in my PD. As Walt, I have always been a VERY active person. I am seeing my neurologist in December for only the second time. I am probably not a candidate for DBS, at least not now, but the Sinemet makes me nauseous and dizzy and frankly I would rather not be on it. What you write about Walt’s experience with DBS makes me wonder if taking pills, even with side effects, is better. I pray that when it is all said and done Walt is doing so much better. I really appreciate your intention to keep those of us on Mayo Connect up to date with Walt’s further progress. I can surely understand the emotions you describe that Walt and you are experiencing. I feel the same. Resolved to fight the disease, being very grateful for a good day, then depressed, fearful and hopeless. I know that I bring my husband down when I am depressed and hopeless and up when I am on the good side of things. The emotional roller coaster is hard on everyone. I wish Walt and you the VERY best. Take care.

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Thank you, Susan! I don't want to scare people off – but I think being properly aware and informed is not a bad thing. It would seem that as each day passed, Walt's pain became a more distant memory – very much, as I was telling him, a woman in labor often says, "Never again!" but the outcome is good and the pain experience memory fades over time. Also – I do believe every person's experience is individual and someone else may experience this surgery very differently. As a caregiver – I want to acknowledge that what you say is true – when Walt is down, I am also in a dark place. I am always walking a fine line between being encouraging and reassuring, but not wanting to appear to dismiss his complaints or fears. It can be exhausting. I am so proud of him for being a fighter and survivor! I dearly hope and I anticipate that as we move down this road, we will be reporting a positive outcome. Best of luck to you!

@susan62

Thank you so much Maxine for what you have written and posted about Walt’s and your experiences with DBS. I have wondered about it. I am 62 and was just diagnosed at the Mayo in September and am very early on in my PD. As Walt, I have always been a VERY active person. I am seeing my neurologist in December for only the second time. I am probably not a candidate for DBS, at least not now, but the Sinemet makes me nauseous and dizzy and frankly I would rather not be on it. What you write about Walt’s experience with DBS makes me wonder if taking pills, even with side effects, is better. I pray that when it is all said and done Walt is doing so much better. I really appreciate your intention to keep those of us on Mayo Connect up to date with Walt’s further progress. I can surely understand the emotions you describe that Walt and you are experiencing. I feel the same. Resolved to fight the disease, being very grateful for a good day, then depressed, fearful and hopeless. I know that I bring my husband down when I am depressed and hopeless and up when I am on the good side of things. The emotional roller coaster is hard on everyone. I wish Walt and you the VERY best. Take care.

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Hi @susan62, I am sorry to hear that you are still dealing with nausea/dizziness problems.
Was your doctor not able to help you with these symptoms?

@susan62

Thank you so much Maxine for what you have written and posted about Walt’s and your experiences with DBS. I have wondered about it. I am 62 and was just diagnosed at the Mayo in September and am very early on in my PD. As Walt, I have always been a VERY active person. I am seeing my neurologist in December for only the second time. I am probably not a candidate for DBS, at least not now, but the Sinemet makes me nauseous and dizzy and frankly I would rather not be on it. What you write about Walt’s experience with DBS makes me wonder if taking pills, even with side effects, is better. I pray that when it is all said and done Walt is doing so much better. I really appreciate your intention to keep those of us on Mayo Connect up to date with Walt’s further progress. I can surely understand the emotions you describe that Walt and you are experiencing. I feel the same. Resolved to fight the disease, being very grateful for a good day, then depressed, fearful and hopeless. I know that I bring my husband down when I am depressed and hopeless and up when I am on the good side of things. The emotional roller coaster is hard on everyone. I wish Walt and you the VERY best. Take care.

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Maxine, yes so many thanks. We wish Walt and yourself all good luck and follow with interest. And Susan, I am a similar age, diagnosed 12 mo ago, symptoms a\re principally a shaky left arm, some twitches elsewhere, balance not quite what it was but still cycling & some tennis. I don't know if this is right but my instincts are to manage as far as I can without Levodopa etc. Principally to postpone the side effects but also perhaps if its efficacy is limited to 'a period', better for it to start later than sooner. Of course treatments may improve too.

@alistair01

Maxine, yes so many thanks. We wish Walt and yourself all good luck and follow with interest. And Susan, I am a similar age, diagnosed 12 mo ago, symptoms a\re principally a shaky left arm, some twitches elsewhere, balance not quite what it was but still cycling & some tennis. I don't know if this is right but my instincts are to manage as far as I can without Levodopa etc. Principally to postpone the side effects but also perhaps if its efficacy is limited to 'a period', better for it to start later than sooner. Of course treatments may improve too.

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Hi Alistair. Thanks for your input! As I say, my neurologist told me that I am at a very early stage of PD. He had me weekly increasing the Sinemet. Was suppose to go up to 2 Tabs three times a day. Made it to two in AM, one and a half early afternoon and one and a half in the evening. I experienced growing nausea(bad) and a LOT of dizziness. Had to sit down for at least an hour. It was not fun. Anyway, when I called him he said it seemed that the dosage was going up too fast and he brought it down to 1 Tab three times a day. I have had WAY less nausea(crackers really help), dizziness and pain in my right arm. My symptoms also have pretty much disappeared. The worse thing before I took the Sinemet was the arm pain. It could be excruciating. Burning, twisting and achy feeling. I probably could handle the symptoms, but having to endure the pain would most likely put me over the edge. It was with me most of the time. I would LOVE to go off of the medication, but I am also fearful if I do that the pain will return. What you say about taking the Sinemet too early in one’s PD is definitely a question I will ask my neurologist when I see him in December. It seems like it might be the “lesser of two evils”. Many thanks for your input.

@susan62

Hi Alistair. Thanks for your input! As I say, my neurologist told me that I am at a very early stage of PD. He had me weekly increasing the Sinemet. Was suppose to go up to 2 Tabs three times a day. Made it to two in AM, one and a half early afternoon and one and a half in the evening. I experienced growing nausea(bad) and a LOT of dizziness. Had to sit down for at least an hour. It was not fun. Anyway, when I called him he said it seemed that the dosage was going up too fast and he brought it down to 1 Tab three times a day. I have had WAY less nausea(crackers really help), dizziness and pain in my right arm. My symptoms also have pretty much disappeared. The worse thing before I took the Sinemet was the arm pain. It could be excruciating. Burning, twisting and achy feeling. I probably could handle the symptoms, but having to endure the pain would most likely put me over the edge. It was with me most of the time. I would LOVE to go off of the medication, but I am also fearful if I do that the pain will return. What you say about taking the Sinemet too early in one’s PD is definitely a question I will ask my neurologist when I see him in December. It seems like it might be the “lesser of two evils”. Many thanks for your input.

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Yes indeed, a shake & a little imbalance is one thing, pain, particularly excruciating, quite another. Pleased to hear that the (adjusted) Sinemet dose is so effective.

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request – and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway – except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

@maxaz1

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request – and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway – except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

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I'm so pleased to hear that Part 2 went so much better. I'm happy for Walt. You make such a good point, @maxaz1, on the importance of advocating for yourself and having others advocate for you as well.

There are times when a patient does have to "step up to the plate" and make their needs known and insist that they are followed. For some folks, who have never been assertive with the medical profession, that can be difficult. I'm glad that you were able to do it.

I will be praying for Walt as he enters Part 3 at the end of the month.

@maxaz1

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request – and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway – except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

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WONDEFUL NEWS Maxine!!!!!! I am thrilled that stage 2 went so well for Walt. All that he has gone through during stage 1 has been terrible. I can totally understand that he was very reticent to forgo the second stage. Very hard to agree to torture. The scariness and pain from the procedure sounds way more than awful. I have been thinking and praying for you both.
I agree with you COMPLETELY that we need to be proactive(having someone like your daughter and the anesthesiologist surely helps a great deal) in our care. I always come with my list when I see a physician. I won’t stay with the doctor unless he/she listens and treats my questions with respect. I also strongly believe that someone else should be in the room with you when you meet with a physician. You have been a GREAT advocate for Walt and a loving supportive wife. More power to you!!!!!
Thanks again for the update!! I hope all continues to improve.
Take care,
Susan

@maxaz1

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request – and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway – except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

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Hi Maxine. Been thinking about you and Walt and hoping all is going well. Happy holidays!

@maxaz1

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request – and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway – except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

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@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.

@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?

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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