Parkinson's Patient: 'I Was Free'

Dr. Frederick Lenz, Kane's neurosurgeon, said "she's the ideal patient," even though DBS is not effective for everyone with Parkinson's. Kane is a good candidate because she has early onset Parkinson's with no complications, that has been aggressively managed with medication. The medication causes side effects, like dyskinesia, that can be treated with DBS. Aside from Parkinson's, she claims to be "healthy as a horse."

"Every advantage is purchased at a risk," Lenz reminded Kane before he listed the possible complications of the surgery. One of the risks of DBS, like any brain surgery, is a debilitating or fatal stroke. Kane was undaunted. "It's going to work" she said.

Most surgical patients are asleep, and unaware of the surgeons in the operating room, but for some brain surgeries, the patient needs to be awake in order for doctors to assess brain function.

During the procedure to implant and test the wire in her brain, Kane interacted with her doctors. They walked her through the steps as they gave her local anesthesia, drilled a hole in her skull, implanted the wire, and tested the effects of electricity. After trying different combinations of location and voltage, suddenly her tremors stopped.

"I haven't felt that way in 16 years," Kane told ABC, reflecting on the experience post-surgery. "It was like somebody dumped a bucket of hot water on me … That incredible dramatic point when I was free."

Getting "Turned On"

DBS requires multiple procedures to implant the system, and then visits with a neurologist to calibrate the settings. When Kane left Hopkins after surgery her symptoms were no better than when she first arrived. They had to wait until she healed before activating the device.

Weeks after her surgeries, Kane returned to the hospital to get "turned on." During this visit, Kane worked with Dr. Zoltan Mari, a neurologist who was in the operating room during her surgery to calibrate the settings.

After her dramatic awake brain surgery, this visit seemed pretty tame, but Kane's expectations were high and there was still a possibility the treatment would not work as she hoped.

Mari sat next to her in the exam room and used a machine that looked like a large PDA to change the settings as Kane gave him feedback.

At first the effects were unpleasant. "It feels like my hand is a concrete glove," Kane said as she held up her rigid hand. Just like in the surgery, eventually Mari adjusted the settings, and Kane's hand stopped shaking. Her eyes welled up with tears as she once again experienced the feeling of release that she remembered from her surgery.

Although Kane left with a positive result, she must return to Johns Hopkins in the coming months to "tweak" the settings again. More than a year after doctors drilled a hole in her skull, Mary Kane is thrilled she had DBS.

For some, DBS is an effective treatment. It has helped Mary Kane continue to run her small farm, but it does not stop the progression of the disease. Unfortunately there is still no cure for Parkinson's.

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