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I remember so much from my brain surgery…..

Updated: Sep 18, 2018

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. On Sunday, June 24th, the day before “surgery week” began, I finally called a former former deep brain surgery patient with Parkinson’s. The NIH had given me his name so that I could talk to a someone from the former patient prospective.

I called him with James on speakerphone, 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 was seemed worse than the actual surgery. I talked about this process a little in a previous blog. By the end of the call though, we 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 that afternoon 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 in my case because I needed all the “normal” I could get. 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 might actually understand that, and I had been told to expect different reactions from people. Mostly, I was completely overwhelmed by many people, who are off the charts busy themselves, yet went above and beyond to help my family. We could not be more grateful. I hope they know how much I appreciate them, and there were 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 the night before surgery around 6pm, and I started to get ready for bed. The nurses had some things to do throughout the evening as well that took until about 10pm, but I feel asleep soon after-no insomnia!. 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 procedure at 7am. 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. I think 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 used lidocaine on my forehead. In the end, the halo placement was not that bad!

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 safe. One woman shielded a young child from seeing me as I was wheeled down the hall wearing this huge head halo. 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 the was very unhappy with this decision. She was not essential to the surgery, and those people had been “kicked out” of the OR for this procedure.

The next thing I remember is knowing that I could open my eyes, and 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. The doctors were putting a test electrode onto the first part of my Thalamus throughs the hole on the top of my head. They were listening for feedback that we all could hear from some machine. The doctors pointed the sounds out to me as I was asked to move certain body parts. It was very exciting when they found the location of the first part of the Thalamus. Unlike the part of the brain responsible for Parkinson’s, the thalamus is one lump on an MRI, not 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 final 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 a machine that was hooked up to my electrode at this point. The doctors had settings from writers cramp patients. Surgery had been done in South Korea on a handful of people for this conditions, 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 effect an immediate positive response. Focal dystonia is only evident for 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 way back to work the keys on the flute, and the flute kept slipping off of my lip. So, playing the flute was so much incredibly harder than I thought it would be.

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.

Also, I remember playing the very basic “video games” I had been shown in the two days before my surgery, although I can't remember during which part of the process I did the games. 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 useable 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 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 lady from Medtronics to turn her machine on and off so that the doctors could see if what they were seeing what wishful thinking or reality. In the end, I believe they felt quite happy with what the probably result. The electrode was moved a millimeter up, and the neurosurgeon prepared to close.

Once I was fully under anesthesia, the doctors made a “pocket” in my right chest for the Medtronic machine. 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 machine will be turned on soon, and the settings on the machine will hopefully tell the brain to do the right thing. This 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 amazing. The research they do will help 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. He was most concerned about me when he saw me in in the ICU. 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, but I couldn’t handle much physically or mentally, of course. I didn’t want to be alone that first Saturday, and I wanted to see my kids. 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 good 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. I finally ordered one that is not big and clunky. I had no idea I’d have to wear one of these all the time.

BUT—I did it!!! I have a 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 my personal “wow” moments.)

No one could have a better husband than me. He has stood by my decisions during this past year this area 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.

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