DBS for Essential Tremor: Cheryl's Story
Ever since I was 30, I had “Essential Tremor,” or ET. My mother and father both had it, too. My doctor prescribed propranolol, which helped, but over the last few years it got worse. I had trouble feeding myself and walking. I couldn’t put on jewelry. My husband had to do my makeup. All this limited my quality of life: If I was having a really bad day, I’d stay home because I didn’t feel like going out in public.
I joined the International Essential Tremor Foundation, along with a local ET support group. It helped to be with people who had ET and were coping with it daily. It was through my research and this group that I heard about deep brain stimulation (DBS) surgery.
I talked to my doctor about DBS; she had actually worked with Dr. Burchiel in her residency, and wrote up a referral for me right away. I thought it would be months before I could see him, but instead it was only a few days. Dr. Burchiel and Antonia Gragg, his physician’s assistant, thoroughly explained the operation, answering all my questions and gave me a three-ring binder full of information for me to take home and read through. I was also pleased to learn that they could do the surgery when I was under anesthesia, rather than being awake for it—which sounded grueling.
Surgery was a lot to consider, but then I thought about how it was only going to get worse. I could suffer, or I could take a chance. I decided to go ahead.
The surgery would be in two parts, first the insertion of the probes into the thalamus, which included boring through my skull. The operation took about four hours and I stayed overnight in the hospital in case there were complications, but there were none. In fact, when I woke up from this first surgery, my husband said, “Cheryl, look at your right hand.” It was so steady, and the DBS hadn’t even been turned on yet!
Five days later I had the second operation to implant the stimulator in my chest just below my collarbone. Again I was under general anesthesia and they threaded the wires from the top of my skull down through the right side of my neck to the stimulator. You really can’t see them; they look like a tendon.. They didn’t turn on the stimulator as they wanted to make sure all was well; it would be a couple of weeks before they turned it on.
When it came time to turn on the stimulator, Antonia talked me through the mechanics of the remote and then turned it on: My tremor disappeared. My body was quiet. My husband and I cried from sheer joy. When Dr. Burchiel stopped by, it was wonderful to be able to thank him personally for giving me my life back.
I went to see Antonia regularly to take care of small problems. I can carry my own coffee, put on my own eyeliner. My husband and I are preparing for a cruise to the Mediterranean, and will be doing a lot of walking: I think I will do really well. I have gotten back to painting, which has been a love of mine for a very long time. In fact, I wanted to do something special for Antonia, so I did a painting for her, called “Hope, Love and Joy” which features three women dancing. That’s how I felt when this was all done. It’s a miracle.