UPDATE: West Seattle tremor patient's successful treatment: "I can eat out, read books, type"
On Friday Drs. Ron Young and Ryder Gwinn, surgeons from the Swedish Neuroscience Institute, hosted a livestream on the affects of Essential Tremor (ET), the Deep Brain Stimulation (DBS) surgical procedure used to treat ET and the other innovative treatment options for ET available at Swedish and throughout the country. ET is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. It is often confused with Parkinson’s disease and is often un-diagnosed.
A West Seattle patient, Matthew Miller, 43, of Delridge, had a severe case of ET and was successfully treated by the doctors with this procedure. He appeared in the livestream broadcast. He explained his DBS device, like a pacemaker for the brain. During the surgery, a tiny wire is implanted in the area of the brain that controls abnormal movement. This wire modifies the brain’s electrical signals to help control tremors and other abnormal movements.
Miller told the West Seattle Herald how this procedure changed his life and granted him more freedom. He said that Dr. Gwen is brilliant, a genius.
"My surgery was done September, 2005," Miller told the West Seattle Herald. "I was one of the first people in Seattle to get it done. It started when I was about 8 years old and it didn't even have a name. I wasn't diagnosed until I was about 22. I didn't even realize what it was when I was young. I was accused of being an alcoholic, a drug addict, because of the shakiness. I grew up in Alaska and so it was kind easy to hide because 'nothing's wrong with me. I'm just cold.' But when I moved to Seattle that's when it really started progressing and becoming noticeable, in 1992. That's what makes my case not typical. It's usually not this far advanced when you are that young. By the time I was in my 30's it was very difficult to even feed myself so that's when I started seeking treatment.
"I avoided going out to restaurants," he said. "The food would be flying everywhere. I stayed home a lot. Thankfully all the jobs I had were at a keyboard in a cubicle where I was not seen. Eight hours a day when I was keyboarding for a corporate travel agent and you have to deal with people staring right at you, and for an essential tremor patient, anything that makes your adrenaline go up is going to make you shake. I stilll feel it inside me. It just doesn't shake anymore.
"There is no pain with the condition itself," he said. "But let me say though that although there is no pain it takes a tremendous amount of energy to try to remain still and to not shake when you are trying to do activities. It is very exhausting so by the end of the day your muscles are just aching because you spent so much effort trying to remain still.
"There is a period with most patients, a honeymoon phase after the surgery, when the electrodes are implanted into your brain and a period of time where the tremors are completely gone while the brain is repairing itself. So for the first 10 days after the surgery I had no tremor at all. I remember the moment it returned, and it returned just like it was before.
"That was very discouraging because you can think that maybe the surgery didn't work. I didn't get rid of the tremor again until I went back to Swedish and was 'programed' by the neurologist.
"I have two batteries in my chest, power sources to the electrodes in the brain. They have to hit the right combination between the pulse, bandwidth, and voltage. There are over 65,000 combinations to hit the right setting. It took months. I have a remote, like a television remote, but much smaller. I turn off the battery when I go to sleep to save the battery power, which lasts about five to seven years before I go back to the hospital for another surgery. When I relax I'm not shaking. That is where essential tremors are different from Parkinson's.
"I can turn the remote off to show people and it's the best party trick ever," he laughed. "Seriously, I will demonstrate it to those interested in the disease. Maybe they have a family member with it.
"All my family has it. Both sets of grandparents, both parents, both brothers. Mine is to a degree that is unmanageable without surgery. I'm the only one who had the surgery so far. I don't know if it is anything heroic. I had to do what I had to do. And for some people it doesn't work at all. For others it helps to varying degrees. I say why not take the chance?
"I work at Children's Hospital, two different jobs. One is float work. My main job is doing triage for the consulting nurses. It's been a really nice career change. It's nice to work with patients in the neurology clinic. I identify. I know what they're going through. Brain surgery is brain surgery. It's scary to go through. But I have no regrets and would do it all over again."