Playing Through Adversity: Focal Dystonia, Deep Brain Surgery, and the Flute
The Complete Set of My 2018-2019 Blogs:
Deep Brain Surgery for a Clinical Trial at the National Institue of Health for Musicians with Focal Dystonia in One Hand
In the room at the NIH, building 10, ready for surgery
A note to my readers, October 2024
I’ve spent hours on the phone with hundreds of musicians struggling with physical issues brought on by playing their instruments.
Here, I’m reposting all entries from my blog that once lived on my former website.
**Disclaimer:** This blog is rough around the edges. The writing is dense, and only minimal editing has been done. I originally wrote these entries to provide essential information for those who needed it and to help people in my life understand what I was going through. Perfecting the writing felt overwhelming, so I’m letting it remain imperfect.
This information is frequently requested, so I’m putting these words in another public spot. Here they are.
Pre-clinical trial photo
Focal dystonia changed my life entirely—from the career I was pursuing to how I felt about myself and the time I would spend working to improve my condition and support research toward a true cure.
Entry One: Before June 2019.
I have wanted brain surgery for a long time, and I’m going to get it!
I am a professional flutist, wife, and mom of two kids, but my music career was in the ultimate jeopardy in 2003. Everyone in my life knows that I teach and perform as a flutist 🎶, but I’ve also been living with what any musician considers a terrible neurological condition. Most people do not know I have this condition because the music world is not a place where one advertises the disability.
Now, I’m at a crossroads in my career as a flutist because of a clinical trial at the National Institute of Health, and I’m going to take this opportunity to “out” myself. Why? I hope my journey during the past 15 years, and going forward, helps other musicians and anyone else who suffers with this condition. I'm now comfortable reflecting on my journey. I hope to use this blog to chronicle different time periods in my life since the onset of focal dystonia: the months of not knowing what was happening 🤔, getting diagnosed, receiving Botox treatment, living and working through treatment, undergoing brain surgery, and life post-surgery. Will the surgery work? That will not be known for quite a while after the actual surgery.
Focal dystonia. I first heard those two words from the maker of my then-new flute, Lilian Burkart. All of a sudden, my left hand would not move on the keys of my flute and, for some reason, I called the flute company. I am not one to sit around when something happens. What was happening to me wasn’t making any sense. I couldn’t breathe.
Since the flute was a recent purchase, I wondered if there was a correlation between the flute and my symptoms. Lilian, after hearing my issue, mentioned that I should look into focal dystonia. She didn’t tell me what it was, and I didn’t ask, but I did feel a sense of foreboding 😟. I’m not sure when I started researching dystonia after that phone call, but it was probably later that day. I know that what I read online scared me to death. From what I read, focal dystonia ended the careers of musicians.
Fast forward to 2005, and I began receiving Botox treatments on my left arm for dystonia, and began working again as a musician 🎵. The road from April 2003 to returning to work as a musician was long, complex, and exhausting 🛤️. It’s still complex and exhausting. I beat the odds, but the treatment is not perfect. I’ve considered quitting the flute many, many times. I’ve cried a lot, in private mostly. I know I’ve been very lucky in many senses, but there are days when I want to hurl the flute out of the nearest window 😩. Sometimes I wished, and still wish, I had just quit the minute I was diagnosed. So many musicians with focal dystonia never get to do what I’ve done since my diagnosis, but nothing is ever the same with my dystonic hand. Botox is not a perfect fix for the symptoms of focal dystonia, but it’s the best option.
Back to the brain surgery part of this 15-year saga! During Winter 2017, my friend from high school, Brian Fojtasek, one of the kindest people I know, met my family for dinner 🍽️. Brian remembered my dystonia and mentioned a study he heard about for Parkinson’s at John Hopkins. Brian recalled that I had told him the conditions and wondered if something might be out there for me. I don’t leave stones unturned, as I mentioned before, so I started my Google search 🔍. Unbelievably, I found a clinical trial at the National Institute of Health for musicians with focal dystonia in one hand. I fit the exact description! The NIH is 45 minutes from my house. I emailed the study immediately.
I always joked with my doctors about having brain surgery to cure my hand, but they always laughed it off. Now, suddenly, this study was exactly what I’d always hoped might happen someday. It’s ironic that before I received Botox, and I couldn’t play the flute for almost two years, that I just wanted to be able to play this flute in some capacity. After the Botox treatment worked (mostly), I wanted more. I wanted to be able to play like me, and not be hindered by my left hand. I would hear my students play things that I simply could not. I would go to a concert and know that I could never win another audition for a full-time performing job. My heart broke so many times 💔. This surgery might be my shot at having some part of my career be better than it has for the past 15 years.
After getting my medical records to the NIH, I scheduled an appointment in July 2017. I didn’t sleep at all the night before. Who would sleep before considering brain surgery? Well, maybe my husband could sleep, but that's a whole different blog. By the end of this day-long appointment, I knew I was a prospective enrollee. I cried in the parking garage. Cried 😢. Looking back now with my vantage point in May 2018, I had no idea how difficult the journey would be over this past year. After delays of different sorts and many more appointments to determine eligibility, the surgery will go forward.
I’ve got so many feelings about the surgery, and so much to share. Next up…the first few days when my hand stopped working.
Lobby at the National Institute of Health, Building 10
Entry Two: The When, What, Where, and How of my DBS Surgery
People have asked me a lot of questions, so I’m going to take this space to answer what I’ve been asked this week. I mentioned in my first blog that I’d start at the beginning—the "My Fifteen Years Ago" beginning—but I need to answer the questions I’ve gotten.
I must say, I wondered last Monday, when I posted my first blog, how my personal story would be received. By the end of the day, I felt an unexpected and overwhelming sense of support, in a way that’s hard to explain, and in a way I hadn’t anticipated. Thank you. My main goals in writing a blog were to reach people like me and to chronicle what the fifteen-year journey has been like for me. I received many private messages from people in similar situations. Mission accomplished. 🎊
Ok, onto the details about what is coming up:
The surgery date has been set for June 27. I’ll check in to the National Institute of Health (NIH) on Monday, June 25, for some tests including blood work, an EKG, and another MRI (I had one earlier this year). I can check out on a pass that night. I'll come back Tuesday morning to meet with the anesthesiologist and undergo "computer testing." Wednesday is the BIG BRAIN SURGERY DAY! 🤯
Everything will start moving along at 7am, and I should be in recovery by 2pm. There’s a post-DBS (deep brain surgery) CT scan an hour later. Thursday morning, I’ll have another MRI and move out of the ICU. I hope their projection of a Friday discharge happens! I want to go to the kids’ swim meet on Saturday. Priorities! 🏊♂️
Right now, putting on the halo that holds my head in place during surgery is the part that scares me the most. If you could all be there to hold my hand at this point, I’d love it. I have to be awake so the halo is put on absolutely correctly. I will receive some pain killers, but apparently, you can feel the screws go into your head. Screws in my head! 😳 So, if I see you after the surgery, you will get to see some nice little holes in my forehead. You can google information about this online. I’m going to stop googling this part.
The day before surgery, I’ll learn to play some simple video games 🎮 that they want me to play again during the actual surgery. The surgery involves finding the right part of the thalamus responsible for Focal Dystonia (FD). MRI’s can show many parts of the brain, but as I understand it, the thalamus shows up as one mass, and this area has three different sections. The right section has to be accessed.
Once in the OR, I’ll be under anesthesia while two holes are drilled in my head. No, or very little, head shaving! Win, right?! 🎉 They drill small holes under hairlines, so no cute wigs need to be ordered! I made a separate phone call with a question about this back in December. You have to be prepared for hair-related concerns.
One hole is where they will do the majority of the work: identifying the three parts of the thalamus and putting in the electrode. Initially, three test electrodes (I don’t recall the exact term) are inserted by the three areas of the thalamus. By finding two areas of the thalamus that can send back signals well, the third area, and the one that malfunctions in my brain, is then hopefully identified correctly. This is what makes this surgery unique. The neurosurgeon is making a very-educated, very well-researched guess.
The second hole leads the wire from my brain, down my neck, and into the battery. That battery will be implanted in my chest. The bump from the implant will always be slightly visible. The NIH has a great page explaining the very similar Parkinson’s procedure: ninds.nih.gov
I will be the first American to have an electrode in the thalamus area of the brain. Surgeons have been implanting these electrodes and chest devices in Parkinson's and tremor patients for a couple of decades now. They can see their affected brain area well on the MRI, unlike the area the surgeon needs to find for my DBS surgery. However, I do feel better knowing this type of surgery is not new in many ways.
Risk. The risk is 1-2% for the surgery, and
Risk. The risk is 1-2% for the surgery, and that includes all the bad things you can think of that might happen. This particular neurosurgeon has a very good outcome rate, which I believe is better than that 1-2%. The greater risk will be infection around the hardware, which would have to be removed should an infection become too big of an issue at any point. Actually, the highest risk is just that the procedure doesn’t work. That will mean I’ll have done all of this, and nothing will work. The main reason for that will be if the electrode is placed in the wrong spot, and we are talking less than millimeters.
After a month passes, this electrode will be activated. The electrode has a vast number of different settings, so the doctors will meet with me each month to try and find the correct setting. With dystonia, the doctors guess the settings will take a while to “kick in,” so the doctors aren’t sure if they’ll see a change in the office when they adjust those settings that control the electrode.
In the months after the surgery, I’ll be able to update you about any changes to my left hand while playing the flute. Over the course of a year, we’ll know if this whole shebang has worked at all. I do hope that the implanted device helps me so much more than Botox treatments.
The recovery for this surgery is not bad considering it’s brain surgery. 🤯 I’ve been told I might feel like I have the flu for a couple of weeks, and not to lift anything heavy for a while.
So, the week of June 25th looks to be one of the strangest weeks of my life. I can’t believe sometimes that I’m doing this at all. At other times, I feel very peaceful about this decision. Someone is going to have this surgery done, I’m in good health, I live in the area, my FD is exactly what they are looking for, and the risk is really low. This is still BRAIN surgery. 🧠
People have asked me a lot of questions, so I’m going to take this space to answer what I’ve been asked this week. I mentioned in my first blog that I’d start at the beginning—the "My Fifteen Years Ago" beginning—but I need to answer the questions I’ve gotten.
I must say, I wondered last Monday, when I posted my first blog, how my personal story would be received. By the end of the day, I felt an unexpected and overwhelming sense of support, in a way that’s hard to explain, and in a way I hadn’t anticipated. Thank you. My main goals in writing a blog were to reach people like me and to chronicle what focal dystonia, fifteen-year journey, has been like for me. I received many private messages from people in similar situations. Mission accomplished. 🎊
Testing a "game" I might be playing in the operating room. This game allows neurologists to study the brain for other reasons than my focal dystonia.
Entry Three: A lot of Personal Feelings.
Here's the revised version of your text with grammatical, syntax, and spelling corrections, along with a few emoji insertions to break up the text visually. I'll also address the use of the word "machine" if it appears:
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A bit of a warning: Some of my posts going forward will contain difficult feelings and moments. This blog entry might be the most "difficult" one, and I won’t "pretty it up." Readers of this blog who have focal dystonia want to read the reality of my situation. Many people have been in touch with me privately, and I feel I owe them, and myself, the truth. Remembering the past and writing about it brings up some tough topics, but I still see this process as positive. 🌱
Here’s a realization I’ve had over time: My journey started in 2003, and there have been so many times I wish I could go back and walk away from the flute and my music career. In fact, if I could magically go back, I would do that and give my energy to something else. I know that’s not what a lot of people facing this condition want to hear, but what I’ve experienced in my career over these fifteen years is not what I wanted for myself. Don’t get me wrong—I do really love so much of what I do now, and I’m lucky in SO many ways. Still, I would not choose the journey or the hurdles in retrospect. The balance is just off. ⚖️
I should have talked to more friends and professionals, besides just my husband, about what I was realistically looking at moving forward. I might have been able to figure out a more satisfying future if I had found people who could have helped me move forward. But, that is not the road I took, and I am here today, going into a clinical trial for deep brain surgery for focal hand dystonia patients.
April 2003 was the beginning of this unwanted journey. James and I had just moved into our first house, and my left hand stopped moving when I attempted to play the flute. I couldn’t even play "Mary Had a Little Lamb." 🐑 I can still feel the panic from those first couple of days. Something was wrong, but it was fixable, right? After my left hand stopped working, my two-year journey to a diagnosis AND treatment began. I would barely touch the flute for almost two years.
Making things even more difficult emotionally, a few days after our move, James left with the Dallas Symphony on a three-week tour. I was alone with boxes of unpacked stuff and the inability to play the flute. I was alone, and I couldn’t sleep. 💤 I was already a very good insomniac, but this crazy situation threw that into overdrive. I kept the blinds shut all the time (the sun is very bright in Dallas), and didn’t do much besides exercising and calling my doctor and neurologists to schedule appointments.
I received a few names of musicians with focal dystonia from a couple of people I must have confided in. What I’ll never forget is calling one of those people with focal dystonia. He generously talked with me over the phone. The air was sucked out of my universe as I spoke to that flutist, who was very open about his struggles, and even his thoughts of suicide. 💔
Here we were in our first house, and I finally had a room that was supposed to be my own flute studio. Before we moved in, I was beyond excited to have this practice and teaching space. James and I would no longer be sharing a practice room or moving things around when we both needed to work. Instead, while James was on tour, I would go into the room and just stare at the walls. I felt like I couldn’t set up the room—not with what I was learning about focal dystonia.
During those days, I listened to a lot of Josh Groban, and I cried. 😢 I am not a big crier, but I got a lot of that accomplished during these first few weeks. Josh Groban is forever tied to this period in my life, so if you want to make me cry, just turn on one of his tunes. My daughter discovered him this year and asked me if I had heard of him. Well, darling, yes. Yep.
I’m not sure exactly when I saw my first neurologist, but I know James couldn’t go to the appointment. I believe he was still on tour. This first doctor thought I might be sleeping on my arm incorrectly. I really didn’t see how that could affect my flute playing so profoundly, but I diligently slept with the arm stretched out. Nothing got better, but I was literally praying this doctor was right. Now, I think he was pretty lazy. Granted, focal dystonia is a rare condition, but still.
Somewhere in this timeframe, I made an appointment with a second neurologist. This second doctor did painful electro-feedback tests. He diagnosed me with focal dystonia that day, but I don’t know why he did those tests. No other doctor that saw me needed them.
When he told me his diagnosis, I was emotionally distressed. This doctor actually said I was seeing the situation as a glass "half-empty" experience. What?! You tell me a life-changing diagnosis and immediately lecture me on how I’m seeing things? He was wrong, though. I saw the experience as the glass being totally empty, and I don’t think that was the wrong feeling at that point! That doctor didn’t give me any treatment ideas. He didn’t even explain a single thing about the condition. I have a very clear memory of him getting all "lecture-y" about the glass being "half-full." He was telling me how to feel. 🤦♀️
My brother and sister-in-law picked me up from this appointment, and I was a very upset person. They must have offered to take me to this appointment, but again, I don’t remember. I do remember how awkward it was to be upset in front of them. I kept big feelings to myself. I grieved alone. They were a very young married couple who probably didn’t know what to think. James was either gone or not free. I don’t remember. As a member of the Dallas Symphony Orchestra, he didn't have the freedom to set his own schedule. We both can’t remember when these two neurologist appointments took place. It’s very possible that I made them happen really quickly.
Also, at some point while James was on tour, my mom reached out to my uncle and his family, who lived fairly close to me in Dallas. Since my mom asked them to help me in some way, we went out to eat lunch or dinner. 🍽️ At this meal, I wasn’t feeling like myself, but I remember, clear as day, my uncle asking me why I didn’t just switch jobs. I didn’t know how to respond to this question and the way it was asked. I do know it was just very bad timing. I was still searching to understand what was happening to me. Would one ask this of a professional ball player or ballerina at a similar point? Is there more sympathy when an athlete has an issue like this? (I think the answer is yes.)
Basically, I was not ready to think of a complete life change just a couple of weeks into this unwanted journey. Being a musician is very much who one *is*, not just what one *does*.
When a person is going through a loss, even if your solution seems logical, don’t say something along those lines. Listen, don’t talk. You can probably ask hard questions if you really, really understand the situation, but I had not talked much with my relatives, nor had they asked much about the condition. No one really asked how I felt, and I wasn’t the sharing type.
I began to realize the reaction I should expect from people would be a lack of wanting to understand. They didn’t understand focal dystonia, and they didn’t want to understand what I was going through. Most of them asked very little about me, but some had their opinions, like my favorite: "Just move on. Get over it." I understood that line of thinking to an extent, actually. After all, I was a healthy person. I wasn’t dying…but part of me was actually dying. 💔 I needed more real, true confidants, and I didn’t seek them out. Focal dystonia is very isolating for most sufferers.
There’d be many more appointments and calls to doctors in the time after this initial period. I had discovered that a lot of people moved quickly to judgment. Musicians judged other musicians for having the condition, assuming, I believe, that one did something to cause it, or was a lesser musician overall. So, musicians did not tell other musicians if they had focal dystonia. Family did not understand the trauma, maybe because I looked normal. Years later in this journey, I finally did tell friends who were not in music about my focal dystonia. By then, I knew these friends were a safe group, and even if they might not fully appreciate what this condition meant to me as a musician, they were the best group for focal dystonia conversations. I could finally say to someone that I’d been to get five Botox shots in my arm, that I had a bad performance, or that my insurance was dropping my coverage again. I hadn’t said much to anyone for many years.
Performing in the lobby of the building where I would have surgery. This recital was part of a series sponsored by the National Symphony Orchestra.How funny the world is sometimes. That's my husband, James, and Sophia Cook on piano.
For year, my left hand was able to move on the flute, at about 80-90% of my normal ability, because of the regular Botox injections to my left arm. Not all Botox injections had the same response rate, and that was difficult over the years. I was grateful though for the overall effectiveness.
Entry Four: 5pm, Wednesday 1/17/2018.
Navigating Hope: The Journey Toward Clinical Trial Approval
Complete exhaustion. Never before had I experienced seven hours of medical appointments and tests in one day! That Wednesday in January was the first of two testing days to determine my inclusion in the clinical trial. Back in July 2017, I went to the NIH for my first visit as a possible patient. James and I had performed a couple of times at the NIH with pianist Sophia Cook, during which I talked with neurologists who wrote the study/protocol. My case was presented in front of many neurologists and other medical types. At the end of that day, I was told I could start the process for inclusion in the study. Once the study was approved by the safety board, I was able to have the appointments in January when the protocol was officially approved by an overseeing board. January was much later than we had originally expected for these two days of appointments, but the protocol was sent back for revisions many times.
James got sick the day before my Wednesday appointments—the terrible kind of sick where you can’t move, and no one should go near you. So, I quarantined him in the master bedroom and took over multiple kid activities. Originally, James was going to handle most of the kid activities so I could get ready for the next two days of testing. Life happened. 🤧
The extreme cold was in full force in our area that week, and I was barely awake when I finally took the dog out around 11:30 pm Tuesday night. Instead of going to bed early, I went to bed totally wiped out. 😴
Wednesday’s testing was scheduled to include hours of psychological testing in the afternoon. In the morning, we went over my medical history, the consent form, I played my flute for a video, and had a regular neurological exam.
Dr. E and I spent over an hour going over the consent form. Normally, we all sign consent forms without really reading them (don’t you? 😉). In this case, we had to cover every word in the consent. During that time, I asked a lot of questions, and James was sending in some questions via text. 📱
I went to grab some food and actually ordered a coffee. ☕ Everyone who knows me, knows I hate coffee (really, really hate coffee), but I needed real caffeine really fast. Three to four hours of psychological testing is a lot to go through when you’re really, really tired.
I never want to do all of those psychological tests again. Every possible test for IQ, depression, psychological issues, and more was pulled out of that doctor’s bag. The psychologists did warn me before the tests began that I might feel frustrated at times. Just knowing that made the frustrating questions and process more bearable.
Thursday, day two. I met with a neurologist who was not connected with the study. The protocol requires an outside doctor to agree on the risk-to-reward ratio, and my expectations were all in line. Later, I had an MRI, which I was not looking forward to because I am somewhat claustrophobic. 😨 The temperature in the MRI area is freezing, but after you put on your lovely paper outfit, the staff gives you a really, really warm blanket while you’re in the waiting area, and another one when you go into the magnet. Your head is stabilized, and you wear earplugs, headphones, and yet another blanket. So, I fell asleep. 💤
When Thursday’s testing was complete and I was driving home, I felt a huge weight lift off my shoulders because I had done the major work involved for pre-approval. However, that was a short-lived feeling. A week later, I found out they needed to re-do several parts of the tests. 😫 The protocol required that I be off my Botox treatment for three months before evaluation, and they didn’t know that before the first round of testing.
Since I’m the first patient in the trial, and the protocol is massively long, they missed that detail. I had gotten Botox just the week before my January appointment. So, while I had been hoping for a “yes” or a “no” to move forward one way or another, I had to wait until mid-April for another testing day. I was really frustrated for a couple of days. I rethought even doing the surgery at that point. I think I was worn out. The whole year had been mentally exhausting. 🧠
After the April tests, I didn’t get a surgery date as planned because of yet another kink. The neurosurgeon (the one actually doing the surgery) wanted to meet with me and James. Usually, patients meet him when they check into the hospital, but he insisted on a special meeting. He wanted us to understand that the greatest risk is that the procedure won’t work.
The neurosurgeon’s schedule was limited (no surprise!), so the earliest we could see him was mid-May. He did have the power to deny surgery, but I was told that wasn’t likely. Still, I felt like everything was completely up in the air while we waited to meet with him.
Interestingly, we learned in this meeting that this particular doctor didn’t work with musicians at all, and he admitted to not understanding why someone would go through this brain surgery to play the flute, or any other instrument. He found the protocol and the prospect of performing this rare surgery very exciting but didn’t identify with such a big surgery for what seemed to be a tiny problem. The problem was tiny to HIM. 😤 This is the exact issue I’ve faced with many people.
On the flip side, what’s fascinating to me is that any neurologist who works with dystonia-affected musicians is very understanding and empathetic. I think I’ve felt the most understood by the doctors who ended up treating me. When I first developed focal dystonia, and was trying to decide which doctor to meet with, I was able to talk to the top neurologists in the country by phone simply because they would take calls from musicians in my situation. The compassion from these doctors always makes me feel blessed. 🙏
After the meeting with the neurosurgeon, the surgery was scheduled for June 27th.
BTW—All of that neurological testing I wrote about before came with results! I am apparently very intelligent (insert jokes here 😆), have no depression, and I had a perfect MRI! (Many people have some white spots from small traumas.)
Looks like I had a cookie with that coffee...
Entry Five: Brandenburg Heartbreak
In the fall of 2003, I became pregnant with Kathryn, so doctor appointments for focal dystonia had to go on hold. 🤰 I still didn’t know what future I was looking at, but I was so sick during the whole pregnancy that part of me did not care. After she was born, I did more research into what my final steps would be for the music part of my life. More to come on that.
In the summer of 1991, I attended the Aspen Music Festival, and Gary Woodward selected me to play second flute on Bach’s Brandenburg Concerto No. 4 with the Aspen Chamber Symphony. 🎶 I had just finished my freshman year of college, so this was a huge opportunity considering the level of flute players at this festival. I was one of only a few students playing in this ensemble with the Aspen Festival faculty.
If you’ve ever seen pictures of Aspen, you know this city is amazing. Every minute I spent there was one that I loved. Performing the concerto in front of thousands in the audience changed my life. 🌟 I wasn’t sure why Gary picked me to play the piece, but I was humbled and insanely grateful. For a couple of weeks after that performance, people would stop me on Aspen’s streets to ask if I was the flutist on the stage. I was blown away. I’ll never forget that feeling.
Fast forward to 2003 in Dallas. My high school flute teacher, Megan Meisenbach, asked me to play the same Brandenburg part with her and a group from Austin, TX, for a Dallas performance. I was thrilled to play one of my favorite pieces with one of my great teachers, and my career was going really well. 🎶 That was the last piece I performed before my hand stopped working. For almost two years, I wouldn’t be able to play at all.
In 2004, after Kathryn was born and was a baby/crawler, I still had not gone back to seeing doctors or playing at all. I hoped that after she was born, I might see some improvement with my hand. I picked up my flute about a month after Kathryn was born, but I couldn’t play. That flute went back in the case really quickly. 😔
Kathryn had a lot of toys like many babies do, but one of her absolute favorites was a star that was attached to her Baby Einstein play gym. ⭐ The star played a mechanical version of the Brandenburg Concerto No. 4! Kathryn would carry it around the house in her mouth as she crawled from location to location. I was unable to play the flute, and my child’s favorite toy played a piece that was very close to my heart. Some days, the tune was a really painful reminder of my loss. Life is funny like that. 🎶
Maybe I’ll play that piece again after this surgery… 🎵
MRI fashion statement.
Entry 6: Here we go!
I remember so much from the brain surgery….
The week before surgery was literally one of the busiest weeks of my life, so I didn’t have much time to think about this upcoming brain surgery.
Sunday, June 24th, the day before “surgery week” began. I finally called a former deep brain surgery patient with Parkinson’s. The NIH had given me his name so that I could talk to someone from the former patient's perspective. I would be at the NIH for pre-op on Monday and Tuesday.
I called him with James on speaker phone, and right away the gentleman spoke about painful halo placement- the part I was having mild panic attacks about, of course. Screwing the halo onto my head while still conscious seemed worse than the actual surgery. I talked about this process a little in a previous blog. By the end of the call though, James and I both felt better about the surgery. The gentleman was beyond pleased with his outcome and with the NIH.
On Monday of “surgery week”, James and I drove to the NIH for a day of appointments. I was given a room, had blood work, an EKG, a chest X-ray, an MRI with contrast, and met the nurses on the recovery floor. I had a neuro exam with seemingly everyone who saw me. We flew through the tests with hardly any wait time in between, and I was able to check out on a pass and go home for the night. I was also able to go with my kids to their swim meet.
Going to the swim meet was great because I needed “normal”. What I was about to do was so not normal. I was able to be with my family, and around friends. So many people were supportive in many ways during the many weeks throughout surgery and recovery. Unfortunately, you do notice some people who normally a part of your life suddenly are missing. Maybe they think you’re crazy. I had been told to expect different reactions from people. Mostly, I was completely overwhelmed by many wonderful people, who were busy themselves, yet went above and beyond to help my family. I hope they know how much I appreciate them. Many times their actions got me through difficult days.
Tuesday, James and I drove back the the NIH to check in—no more passes. We met with doctors, nurses, and the anesthesiology department. Every doctor we met made feel more and more comfortable. Some were clearly excited. James and I had decided that he didn’t need to stay that night. I felt better with him checking in with the kids and animals even though my father-in-law had flown in from Florida to handle the kids. I thought we didn’t need much help. I was wrong, and we are so lucky he jumped in to be here.
James left for home the night before surgery, and I started to get ready for bed. The nurses had some small pre-surgery to do throughout the evening and that took until about 10pm. My roommate had a medical issue occur at 5am, so instead of getting up at 6am, I was up, feeling really tired, at 5am. In two hours, the surgery process was going to start. James arrived at 6:30am, and things began to happen.
I was wheeled on a bed to the second floor, from the 7th floor inpatient unit, to get ready for the 7am procedure. We went to a pre-op area where the anesthesiologists and surgeons all met, as we got ready to put on the halo. At this point, James was told to go to the waiting area. I had told everyone who asked that morning how I was doing that the halo was scaring me. The thought of four screws going into my head while I was awake was hard to imagine.
The anesthesiologists did a great job after listening to my concerns. I felt just enough “funny” with the light sedation that I was not panicking as they put the lidocaine on my forehead. In the end, the halo placement was not that bad because they screwed in all four screws at once!
Next, my neurosurgeon and the resident neurosurgeon wheeled me down to get a head CT. I remember thinking that it was interesting that some of the most important doctors in the surgery were the only ones with me. I think they might have wanted to see the CT right away, in retrospect, but even in my drugged state, I felt good having them with me.
As we went down a hall, I saw a woman shiel a young child from seeing me. That was an odd feeling. We headed to the OR after the CT, and I remember seeing a lot of people in masks waiting for me. The neurosurgeon had decided that no one “extra” was allowed intros surgery, but there were still so many faces. One neurologist I was seeing throughout my NIH stay was very unhappy with this decision. She was not essential to the surgery, and those people had been “kicked out” of the OR for my surgery.
The surreal parts began. The next thing I remembered was knowing that I could open my eyes. When I did, I saw a lot of cameras. I had been lightly sedated, but not conscious, while two holes were drilled in my head: on the right top, and one near my right ear. I don’t remember that.
I do remember the doctors discussing things as the put the test electrode into the first part of my thalamus through the hole on the top of my head. They were listening for feedback that we all could hear from some machine. The doctor pointed the sounds out to me as I was asked to move certain body parts. It was very surreal when they found the location of the first part of the thalamus. Unlike the part of the brain responsible for Parkinson’s, the thalamus shows up as just a lump on an MRI, not as three individual parts. Locating the right part of the thalamus was the hard part of this surgery, and the big risk was that the surgery would not work because the electrode might be placed incorrectly. The neurosurgeon was using the feedback from the test electrode, GPS technology, and research from other doctors, to find the right area for placement of the third electrode.
Next, I understood that they began placing the second test electrode to hear feedback from the second area of the thalamus. To me, this took a long time but later after surgery, one doctor mentioned that they found the area more quickly than they expected.
Using these two locations, and measurements sent from doctors around the world, they moved to the third area of the Thalamus, and began testing my response while I played my flute. This third area of the Thalamus doesn't send back feedback like the two other areas. A representative from Medtronics, who was in the room on my right side, was working on a machine that was hooked up to my electrode at this point. The doctors had settings from writer's cramp patients. Surgery had been done in South Korea on a handful of people for this condition, and the settings to relieve the writer's cramp were a starting place for my settings. As they tried settings, the doctors had to try for the highest usable setting. Finding that point was the worst part of the surgery because that entailed causing a painful dystonic reaction— my left arm, left leg and foot to cramp.
I was “playing” the flute throughout this part of surgery in part to see if maybe the different settings would affect an immediate positive response. I could barely get my face on the flute and I was freezing. I should have picked a slow song. Instead, I kept trying a pattern that I couldn’t play at all, even with Botox.
Focal dystonia only affects me when I played the flute, so this was an effort to help pinpoint the correct location for the permanent electrode. Both the doctors and I felt like we did see a difference at one point. I was shaking from the cold, I had to pull my right arm back to work the keys on the flute, and the flute kept slipping off of my lip.
I had brought a “junker” flute for the surgery. Taking an expensive, professional instrument into surgery, and handling it while you're all drugged up didn’t seem like a good idea. One doctor was handing this flute back and forth. He was pretty funny about the whole thing. He had to help me guide the flute under the bars of the halo. On the video, the halo doesn’t look like its in the way, but to me in surgery, I couldn’t get the flute into position.
During the next part of the surgery, I remember playing the very basic “video games” I had been shown in the two days before my surgery. A separate doctor had created these games just for my type of surgery. The brain can’t be studied in certain ways without opportunities to run tests during surgeries like mine. I’m glad more information was hopefully usable for future innovation.
All of the flute “playing”, body cramping, and games was very exhausting for me. My 14 year daughter told me that she thought the week in the hospital might be relaxing. Ha! I’m still waiting for that week, BTW. Also, I know I cried at some point during surgery, and I randomly still cry. I don’t know if that’s a surgical side-effect or just my deepest emotions catching up with me.
While trying to place the third electrode, there was a lot of conversation between Dr. E, (who is the movement disorder neurologist I’d been working with since the beginning of this process back in July 2017), the head of movement disorders department at the NIH, and the head neurosurgeon. As I wrote earlier, the incorrect placement of this electrode can cause the whole procedure not to work. I mentioned before in this blog that we all thought improvement was noticed. At this point, the doctors asked the representative from Medtronics (maker of all of the equipment) to turn her machine on and off so that the doctors could see if what they were seeing was wishful thinking or reality. In the end, I believe they felt quite happy with the probable result. The electrode was moved a millimeter up, and the neurosurgeon prepared to close.
June 27th. Surgery day. Headed down to the surgical floor.
Once I was fully under anesthesia, the doctors made a “pocket” in my right chest for the Medtronic battery. The wire from the electrode was run through my neck to my chest using the second hole behind my ear. I can feel this wire under part of my scalp, and yes, this is very strange.
If one looks for it, the small machine is visible as a small square on my right chest. This battery will be turned on soon, and the settings on the electrode will hopefully tell the brain to do the right thing. The process of getting the right settings can take many months, so I’ll need to be very patient. I think I’m experiencing some results already, but apparently they are temporary due to brain swelling. It does feel pretty amazing to play the flute differently!
I can’t explain all of the amazingness about being able to remember a lot of my deep brain surgery. I’m amazed by the doctors and nurses at the NIH. The NIH is truly unique, and unique. The research they do will helps us all, and we need to make sure funding is never cut from this unique institution.
James and I started “comparing notes” after the surgery. We both had been through a life experience in very different ways. James was called several times during the surgery and given updates. The nurse even let him hear me play. He was very concerned about me when he saw me in in the ICU after surgery because I looked very pale and very still. James was called several times during the surgery and given updates. The nurse even let him hear me play.
I didn’t realize how exhausted I would be after the surgery. I was discharged on Friday after the Wednesday surgery. I felt so terrible in the ICU Wednesday night, but relatively speaking, things improved quite quickly from Thursday to Friday.
I actually attended a swim meet on Saturday. Yep, I did that. I didn’t want to be alone that day. Again, I needed a little bit of normal. I remember Friday afternoon how fabulous it was to lay down in my own bed, and how nice it was to spend some time sitting with my father-in-law and James on the back porch.
I was, and still am, sometimes overwhelmed by too much information or too much to do. The long lasting fatigue is mostly gone at the 2 1/2 week mark, but I could probably use more naps. I get tired fast after a few hours. My neighbors provided dinners, and lots of support, which helped more than they can know.
I can’t lift more than 10 pounds until 6 weeks after surgery, nor can I swim or soak the chest incision area. I have to wear a medical alert bracelet.
BUT—I did it!!! I have at least tried what I always wanted—something that will kick focal dystonia’s butt. Maybe this type of surgery will be the beginning of the end for focal dystonia.
The whole team at the NIH and I did it. Wow. (I’m still having lots of personal “wow” moments.)
No one could have a better husband than me. He has stood by my decisions during this past year even though I’m sure it was harder than he has admitted. He has looked a little pale once or twice. He has not for one moment made me feel crazy for joining this clinical trial. Through my experience, he has watched the toll focal dystonia takes, and I know he wants me to to have it all. We all need a partner. Thank God I have him.
I know… Kind of gross. These staples were removed a couple weeks after surgery.
Entry 7: Activation! Does this make me a Cyborg?
On July 25, 2018, one month after deep brain surgery, James and I went back to the NIH for one of my first appointments as part of the clinical trial—not counting the removal of the staples from my head, which was just related to the surgery itself. I’ll have many appointments over the next 5 years, but I go in monthly for the first three months, sometimes twice in the same week, for all sorts of testing and programming.
⚙️ Prior to this appointment, the electrode, wires, and the battery were surgically implanted, but none of these were on yet. The electrode is on my thalamus, and the wires connect the electrode through my head and neck to a battery in my right chest. In these types of surgeries, swelling in the brain needs to go down enough for programming to begin, hence the one-month wait to turn this equipment on.
We went to the 5th-floor clinic, where I had been many times in the past year, and five medical personnel, including a representative from Medtronic, were in the room. Medtronic is the company that makes all the equipment I mentioned earlier. That day, their representative had new software and a new programmer that looks like an iPad. 🩺 All the doctors were excited to see the new programmer, commenting on how much of an improvement it was over the one they were currently using. So, some of my appointments were also training for them. I also learned that the battery in my chest was FDA-approved for 9 years of use but had just been extended to 15 years. We felt like we were literally watching innovation happen.
I can feel the wire in my head with my hand, and sometimes I can feel it without touching it. When I first felt the wire on my scalp, it was a surreal moment. 🧠 I can’t feel the entire length of the wire as it travels to the electrode. The electrode is about a 1.5-inch square that I can definitely feel by touch, and someone looking for it could make out its shape under my skin.
This appointment's purpose was to program the electrode in my brain. The electrode itself has four spots that can be activated. Dr. E started with the bottom spot and worked her way up. She would activate one spot at a time and gradually increase the current, noting what I felt as the current increased. At the height of my tolerance, some part of my body would cramp in a way that would hinder daily life if that setting was used. ⚡ I felt my shoulder and neck cramp during one of the electrode tests, and I felt like a balloon deflating when the current was turned off. Near the top of my tolerance level at each spot, I’d play the flute and report if anything felt easier while playing.
🎶 At the testing of the third and fourth spots, I did feel a change when playing my flute! After all four spots were tested, Dr. E chose one spot on the electrode to leave on.
So, people ask if I’ve had results. Yes!!! But we still have a lot of settings to try as needed. This type of DBS has not been done for focal dystonia before. Basically, the doctors were hoping to see some change at this appointment, with the idea that my results would improve over weeks. 🧪 At the end of August, Dr. E can continue to adjust the settings based on what is or isn’t working.
It’s so hard to explain my results at this point. I haven’t had Botox since January, so I’m sure I’d be having a lot of difficulty playing the flute by now if this setup wasn’t working. The only issue I seem to have right now is that my ring finger wants to stay down more than it should when I’m using a few crossover fingerings (high-note fingerings) at high speeds. But really, most everything else seems to be really, really good. My pinky seems to be very improved. My pinky and ring finger seem to work great together.
💪 Why am I not going crazy with excitement? I’m cautious.
The whole process has been tiring, both physically and emotionally, but I’m actually optimistic. I don’t know how to explain what the results feel like or why it’s a bit difficult to quantify. Here’s the scoop right now—on this day, I can play almost anything, and I feel stronger overall in my affected fingers. I could play you a solo recital, and you’d never know a few combinations of notes aren’t easy. 🎵 Those combinations don’t even come up in much music anyway. I really do think we will be able to get the settings to where I can do anything. I just need these next few appointments to see exactly what adjusting the settings does for my playing. The results I’m getting from the electrode feel different from the Botox results. Botox has side effects like weakness in the treated arm, and it gradually wears off. So, the peak effect from Botox doesn’t last from injection to injection. Botox treatments have peaks and valleys.
I tried for so long not to get my hopes up and to focus on moving through the process. I had to keep reminding myself that this might not work at all. Yet, now I’m playing anything I want on the flute daily.
At the end of the appointment, the other three parts of the electrode were not left on for this first month. One spot on the electrode is currently active. Throughout this three-hour appointment, James and I were really gaining a deeper understanding of everything that’s happening to make this work. 🛠️ We were blown away by medical science and these doctors. May this country continue to innovate and research. We cannot lose that as we try to implement healthcare for all.
I was given a whole bunch of equipment to take home to manage this device in my chest and brain. I have to charge myself two to three times a week. 😉 Yes, this is strange. I have a whole setup to recharge the battery.
🔧 I also have a small device that enables me to essentially adjust or completely turn the current off.
📅 Summer 2018 is definitely one for the record books. See, now I feel myself getting emotional...
An image of the electrode’s fields running in my brain. This picture is from a couple of years into programming and is very complex program, not like my initial settings.
Entry Nine: December 10, 2018
I am way behind posting on my website blog. For some reason, I find it daunting. I’m basically trying to practice enough to “feel out” what is happening with the settings I’m currently on. I’m gradually pushing the voltage up on one setting. I have four possible settings that I can switch between, but the other three don’t seem to work as well as my “A” setting.
Don’t worry -- my doctor did put an upper limit on my remote control. I can, however, get lightheaded and experience some spasms on my left side when I have pushed the “A” setting too high. I just turn the setting back down when that happened.
That said, what caused me to experience a spasm last week, isn’t causing one this week. Apparently, there’s a threshold I might reach that is optimal. Is everything optimal now? Not just yet. I am playing, performing, and teaching. I just want more perfection in my left hand! I learn more at every visit, and I’ve learned they have many possible parameters as possibilities for me.
Here’s some of the ugly,because there’s no getting away from ugly if you’re honest: focal dystonia makes me feel stupid for choosing music as a career, focal dystonia can make me feel unworthy as a person, focal dystonia makes me feel isolated, focal dystonia sucks.
Is there worse, yes. But, sometimes I don’t care. To hell with being politically correct.
I’m so far behind explaining where I am now in terms of the electrode working, and how things are going. I’m not going to catch up now, but we do know it’s working. The electricity does change my playing, but the right combination has yet to be found. I have been playing concerts, so my performing life isn’t suffering. My mental life sufferers sometimes! Figuring out the correct setting is not easy.
There’s so much nuance to explain, and I don’t seem to have the energy to explain all the nuances. There have been some bad days and some very hopeful days. All this takes up more of my life than I knew it would.
Today, and the rest of the weekend, I’ll play for the Manassas Ballet using a setting I haven’t used before this week. Every setting feels different to me in my mind and in my hands. Each one cause new issues, and helps others. I need to stay on this one for weeks, because a setting can take that long to optimize.
I have moments of great fear playing the music, but I did only get this music Sunday night, so this would be a lot for anyone.
I’m on my “B” setting: 2.4 Hz, 90 pulse width, 210 frequency.
My regular neurologist that I saw for Botox since I moved here, and who understands this treatment inside and out, says there are 22 million combinations! May the odds be in my favor.
The office where I go for apppointments.
Enry Ten: October 2024
October 2024, Today
The five-year clinical trial at the NIH ended for me in June of 2023. Each year, I saw my doctor for a set number of visits that gradually decreased over time. Occasionally, I needed extra visits when my programmed settings deteriorated to the point that I couldn't truly play. My stress levels would skyrocket. 🚀
At times, I would be using a setting with incredible results, and for some reason, the results disappeared. No one knows why. 🤷♀️
In the last couple of years, my settings have been relatively stable, bringing me as close to my natural flute-playing self as I may ever be. 🎶
Even though Botox worked well for me and I’ve had this amazing surgery, I’m no longer the new musician in town or the flutist advancing at major symphony auditions. I perform around the area and have had incredible experiences on stage over the years. I hope to continue receiving opportunities to play with orchestras and at other musical events. No one knows how much those experiences mean to me. I hold out hope that, even at my age, new opportunities will come my way after all I’ve been through. I have never slowed down. 💪
There were performances and shows that I played when my hand was not cooperating at all. The mental strain I went through was immense and not something many others could understand. But here I am! I’m still that musician who went to school with so many hopes and dreams and that love of playing the flute. 🎵
I see my regular neurologist now for check-ups. He programs for conditions like Parkinson's and now focal dystonia! He administers Botox for musicians and, in fact, was my doctor when we moved to the DC area in 2008. I've known him throughout this entire journey. A wonderful person named Helen, who works at Georgetown Neurology, has also helped me countless times with various issues. 🩺
Four other musicians had the same surgery after me, and as far as I know, they are experiencing great results. They are at different stages in the five-year trial. I spoke at length with each of them before and after the surgery. We are a small club with much in common. 🎻
Right now, I don’t know exactly what the results of this study mean for others. Last I checked, the surgery wasn't being offered beyond our group of five. I can only imagine, and hope, that the surgeries and the results will be studied broadly.
I pray for anyone affected by focal dystonia. I see you. I understand. ✨
