A Park City woman has made a remarkable recovery after a successful surgery helped treat a debilitating medical condition known as Dystonia.
Park City resident Becky Yih was your typical active member of the community. She trained for marathons, and triathlons along with skiing in the winter and biking in the summer. She noticed decades ago that some days she wouldn’t be able to run but would simply take days off, not suspecting it was the early stages of a debilitating disease. About 10 years ago that disease started to progress more rapidly preventing her from running all together and limiting her activity even further. Yih said she looked for a diagnose for around 15-20 years.
“My doctor at the time I really liked. I thought he was working really hard. He started out trying dopamine on me which is a neurotransmitter which actually helped so we were all excited about that but then it didn’t keep helping enough. He finally decided I had full-blown Parkinson’s and then he tried drugs for that which actually just made me feel worse and worse. Then he decided since some days I seemed better and some days I seemed worse that it was a psychological disorder. That is how I got to referred to the National Institutes of Health for a study for psychogenic disorders that appear as a neurological disorder.”
When Yih went to NIH campus in Maryland she received a multitude of tests before finally receiving a different diagnosis.
“Then after all the looking at me (The doctor) came out and said you have Dystonia. At the time he called it multi-focal which means my hand, my leg, various things that seem unconnected but that were all a form of dystonia. As an easy way of describing it I call it motion-activated muscle seizure. As soon as you start to use a muscle it seizes. In my hand I didn’t even really care so much it’s like don’t write don’t pick anything up, but my leg I couldn’t bike, I couldn’t run, and it got where I couldn’t walk because my leg was so seized up.”
Yih says that her Dystonia took even greater control of her life.
“I could walk around the house but then I would realize that for days I had not gotten out of the house. Most of the time I did not go up stairs during the day. Once I came downstairs that was it. If we had something in the kitchen, I could cook I cooked dinner. Sometimes I could go to the grocery store, but I couldn’t go to the grocery store and cook on the same day. So very limiting and very isolating.”
Yih heard about deep brain stimulation implants and did her research into the procedure. The procedure had risks but after about a year she decided in September to enroll for the surgery at NIH. Yih describes the result of the operation.
“There’s a borehole in the top of my head and behind my ear and a little wire is run down to a part of my brain called the globus pallidus interna which is where movement is regulated or at least my type of movement. There’s a little wire and a little strip there with four tiny little nodes on it and that’s where they can send electrical current. Then a telephone sized cable runs under my skin, down my head into my chest where they implanted a matchbox size implant that’s a rechargeable battery. Every night now I have a charger, it’s called an antenna, that’s about the size of a small saucer that I place over that spot and then it’s connected to what you might think of as a remote charger just like you might charge your cell phone.”
A month after the surgery Yih returned to the center where they calibrated the voltage of the nodes inside her brain. The doctors told her that it would likely be months before she was able to return to some normal activities.
“Well lo and behold, just the fact that this little wire and strip were on my brain part, it’s called lesion effect, I already could walk better. Instead of barely walking two blocks and my husband essentially helping drag more or literally pulling my leg forward, we went out and walked a couple miles. Which was just astounding. After they turned the charge on not only could I walk I’ve gone back to cross-country skiing I’m regaining strength and balance and the happiness that can bring you.”
Yih will go back to NIH every four weeks for a few more months and then once every three months for adjustments. As successful as it’s been so far Yih is hopeful that future adjustments will make even greater improvements. Yih got emotional when she connected her life changing decision to this year’s Sundance Film Festival theme.
“The slogan this year is “Risk Independence”. I saw a quote yesterday by Robert Redford who said “Risk is the catalyst that propels you forward” and that spoke directly to me.”
You can listen to Becky's full interview below.
