• Julianna

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 trail, 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 machine 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 machine in my right chest. In these types of surgeries, swelling in the brain needs to go down enough for programming to begin, hence the reason for the one month wait to turn this equipment on.


We went to the 5th floor clinic, where I have been many times in the past year, and five medical personnel, including a representative from Medtronics, were in the room. Medtronic is the company that makes all of the equipment I talked about previously. That day, their representative had new software and a new programmer that looks like an iPad. All of the doctors were really into seeing the programmer, commenting a lot on how much improvement it was over the one they were currently using. So, some of my appointment was training for them. I also found out 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 just feel it without touching it. When I first felt the wire on my scalp, that was a crazy moment. I can’t feel the entire length of the wire as it travels to the machine. The machine 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 purpose was to program the electrode in my brain. The electrode itself has four spots that can be activated. Dr. E started with bottom spot, and worked up to the top. She would activate one spot at a time, and gradually turn up 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 third and fourth spot, I did feel change when playing my flute! After all four spots were tested, Dr. E picked one spot on the electrode to leave on. So, people ask if I’ve had results. Yes!!! But, we have a lot of settings still to try as needed. Also, people with dystonia that affects their daily life and larger body parts have experienced that the current can take several weeks to convince the brain to change - or at least that’s the best way I can describe it. 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 is so hard to explain my results at this point in many ways. 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 set up was not 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 cross-over fingerings (high note fingerings) at high rates of speed, but really, most everything else seems to be really, really good. My pinky seems to be very improved. My pinky and my ring finger seem to be great when moving together.


Why am I not going crazy with excitement? I’m very cautious.

The whole process has been tiring physically and emotionally, but I’m actually optimistic I may have not symptoms at all soon. I don’t know how to explain what the results feel like, or why it’s a bit difficult to quantify. Here’s the skinny—on this day, I can play most 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 couple appointments to see exactly what adjusting does for my playing. The results I’m getting from the electrode feel different than the Botox results. Botox has side effects like weakness in the treated arm, and it gradually wears off. So, a peak effect from Botox doesn’t last from injection to injection. It just feels different!


I’ve tried for so long not to get my hopes up, and just keep moving through the process. I was always thinking that this might not work at all. Yet, daily now I’m playing anything I want on the flute. I know these doctors wouldn’t have started this trial if this surgery didn’t have a great chance at working.


Back to the appointment, the other three parts of the electrode were not left on for this first month. One point on the electrode is currently active. Throughout this three hour appointment, James and I were really gaining a deeper understanding of everything that’s really going on to make this work. We felt 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 handle this device in my chest and brain. I have to charge myself two to three times a week. ;) Yes, this is strange. I have one remote-like device that enables me to essentially turn the current off. I might need to do that if I feel strange all of a sudden, or I needed an MRI due to an emergency. I can also turn my settings down with this remote. To recharge the battery in my chest, I attach a round disk to my chest. I can use stickers to attach the disk, or an over the shoulder harness that holds the round disk and its own charger. I watch the disk’s charger to make sure it’s got a good connection to the machine in my chest, and the charger indicates when my battery is fully charged.


The device I use to re-charge my implant also has to be re-charged by another device that plugs into the wall. Imagine the round disk and its set-up as an iPhone, and the wall charger as an iPhone charger.


I technically don’t have to recharge if I want to take a break. I’m only affected by dystonia when I play the flute, so if I’m not going to be playing, I could technically stop charging up my battery. However, since, my brain is getting used to the current, and I want to get the best setting at these appointments coming up, I foresee myself staying consistent with recharging. Just a bit of techno information - the battery of the machine in my chest would have to be surgically changed if I let it completely die three times, but to completely die it would take about 50 days. After dying three times, I’d have to have the battery surgically changed. I won’t be letting that happen!


Summer 2018 is definitely one for the record books. See, now I feel myself getting emotional…




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