I wanted brain surgery for a long time...
Updated: Jul 27, 2018
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 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 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 others musicians and anyone else who suffers with this condition. I feel comfortable looking back at my journey now. I hope to use this blog to chronicle different time periods in my life since the onset of focal dystonia: the months not knowing what was happening to me, getting diagnosed, receiving treatment of Botox, living and working with treatment, brain surgery, and life post-surgery. Will the surgery work? That will not be known for quite awhile 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. 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 wasn’t long knowing me. It probably was later that day. I know that what I read online scared me to death. From what I read, focal dystonia ended the career of musicians.
Fast forward to 2005, and I had started having Botox treatments on my left arm for dystonia, and began working again as a musician. The road from April 2003 back to working musician was very 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 so very lucky in many senses, but there are the days when I want to throw 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 what I’ve done since my diagnosis, but nothing is the ever 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 stared 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. ME! ME! ME! 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, of course. Now, suddenly, this study was exactly what I’d always hoped might be possible happen someday. It’s ironic that before I received Botox, and I couldn’t play the flute for almost two years, thatI 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.