5pm, Wednesday 1/17/2018. In The Middle of Getting Approved for a Clinical Trial.
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 into 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 times at the NIH with pianist Sophia Cook during which I talked with neurologists who wrote the study/protocol, and my case was presented in front of many neurologists and other medical types. At the end of that day, I was told I was could start the process for inclusion into 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 expected originally 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 when you can’t move, and no one should go near you. So, I quarantined him in the master bedroom, and took over picking up Kathryn from her middle school musical rehearsal, preparing dinner, driving to and from basketball, and driving to and from dance. I made lunches for the three of us for Thursday at about 10:30 on Tuesday night. Originally James was going to handle all most of the kid activities so I could get ready for the next two days of testing.
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. Since she was only a few weeks out from her own surgery--the third surgery for her patella (knee) she was only allowed out on short leash walks. 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 did what It we did a medical history, the consent form, I played my flute for a video, and had a regular neurological exam. Dr. E and I took 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 some questions in via text.
I went to grab some food, and I actually ordered a coffee. Everyone I know, 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 got 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. I had to put a shape together from the choices below, complete a symbol pattern, listen to a story and try to re-tell it exactly, and then re-tell that story 5 minutes later. I answered all sorts of basic history questions, had to remember different pairs of words, drew a copy of a picture that was put in front of me, and then was asked to draw it again fifteen minutes later from memory, and on and on…. and on. The psychologists did tell me before the tests began that I might feel frustrated at times. Just knowing that made the frustrating question bearable.
Thursday, I went back for day 2 of tests. I met with a neurologist that is not connected with the study. The protocol requires an outside doctor to agree the risk to reward ration, and my exceptions, were all in line. I also 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 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 another blanket--which allowed me to fall asleep during the test!
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. I had finished my part of trying to get approved for the study, 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 prior evaluation.
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” in order 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 days. I re-thought the entire surgery idea at that point. I think I was a little worn out. The whole year had been mentally exhausting for many reasons.
After April tests, I didn’t get a surgery date as planned because the neurosurgeon (the one actually doing the surgery, not creating the protocol) wanted to meet with me and James. He wanted us to understand that the greatest risk is that the procedure won't work. Usually patients meet him when they check into the hospital. So, I had another delay waiting for a final answer.
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, but I still felt like everything was completely up in the air. That’s an unsettling feeling to live with over many months.
Interestingly, we learned in this meeting that this particular doctor doesn’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, better. He found the protocol very exciting, but didn’t identify with such a big surgery for what seemed to be a tiny problem. This is the exact issue I have face with many people about why focal dystonia is so difficult in and of itself.
I told him we need to introduce him to the world of musicians. What’s fascinating is that any neurologist (not neurosurgeon) who works with dystonia affected musicians is very understanding and empathetic of musician struggles. I think I’ve felt the most understood by the doctors who ended up treating me, not the ones I mentioned that I initially saw. I haven’t yet blogged about the doctors who would end up providing a treatment. When I first developed focal dystonia, and was trying to decide which doctor to meet with, I was able to talk the top neurologists in the country by phone simply because they would take calls from musicians in my situation. One of my current neurologists at the NIH worked with the top doctor in the field in NYC. I mentioned that I had called this NYC doctor and spoken with him fifteen years ago. I had been so surprised that I could just call up talk to him. She said he was reachable that easily only by musicians like me. The compassion from these doctors always makes me feel blessed.
We really enjoyed talking with the neurosurgeon, but I needed to know one thing after hearing his take on doing the surgery. Since he was surprised someone like me would go do this surgical path, I asked if he was still going to do his very best job to get it done right. He was going to be THE person dealing with MY brain. He has promised. (smiley face) The surgery was then scheduled for June 27th.
BTW—all of that neurological testing 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), which they don’t see very often. So there!