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Deep Brain Stimulation alternative

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Continuing my series of columns for April on Parkinson’s Disease, this week I will address Deep Brain Stimulation (DBS) surgery.

I came to find that my symptoms were worsening, and my quality of life was not what it had been.

Dyskinisia was the main problem. A common symptom of Parkinson’s, I could barely sit in a chair. I was constantly tipping over and I even twisted right out of my office chair on several occasions.

When I saw two videos of myself, I started thinking seriously about having the DBS surgery. One video was taken of me dancing with daughter Toni at her 2010 wedding, the other was when I spoke to the local Parkinson Support Group in early 2011. I was not aware of how much my head was twisting until I saw those videos.

I was also experiencing an increasing number of Parkinson’s “spells.” The medical people call it “down time,” when your body does not respond to your medications.

When I had a “spell,” I couldn’t walk other than to shuffle from one place to the next using one or two canes. I also had a fear of falling, which was happening a lot more often.

I decided to talk with my neurologist, Dr. Gary Reese, about giving serious consideration to having the DBS procedure done. We had talked about the surgery several times over the years as an option, but he had never recommended it because of risks involved. But when I brought it up this time his attitude was quite different.

“They are having a very high success rate these days,” he said. “I can give you some names to research it.”

One doctor was at Barrows Neurological Institute in Phoenix, the other was Dr. Virgilio Evidente at Mayo Clinic. I opted for Evidente since I have Mayo insurance through my wife, Diane, who works there (Incidentally. she is celebrating 15 years with them this week.)

The goal of DBS surgery is to restore function by stimulating neural activity through surgically implanted electrodes. It was developed in the 1980s and used for treating Parkinson’s and extreme tremor patients.

Diane contacted Dr. Evidente’s office and the consult session was scheduled. He and Dr. Mark Lyons are nationally recognized specialists in DBS. They work as a team for the procedure. Lyons is the surgeon and Evidente is the “navigator,” monitoring brain activity on a computer screen as the electrodes are inserted.

To see if I was a good candidate for the procedure, I had to undergo a series of tests.

They began with being video-taped doing a series of movements such as walking, touching each of my fingers with my thumb, and standing up from a chair with my arms crossed in front of me. They took a video of me with no medication in my system and a second after being medicated. The difference was major, but not surprising to me.

Another session was with a voice therapist. Again a video was taken of me doing different vocal exercises. Next was a swallowing test where I swallowed a variety of items, both liquid and solid.

The final session was a 3-1/2-hour Neuropsychology exam. Each exercise started out simple, but became more difficult.

I was mentally drained when it was over.

My surgeries were scheduled last August. There were three in all, the first two were to open holes in my skull and put the wiring in place and the third was to install the device that creates the electrical impulse and connects everything together.

During the first two surgeries I was conscious. My skull was placed in a halo device to hold it steady. The leads are a set of thin wires covered with a protective coating. One is implanted on each side.

During the surgery the neurologist asked me to do certain movements at his command. Approximately four inches of the lead is implanted inside the brain. The rest of the lead (about 15 inches) is implanted under the skin of the scalp.

The extension is a set of thin wires covered with a protective coating that connects the lead to the neurostimulator. The extension is connected to the end of the lead, just behind the ear. The connection point is placed under the scalp. The remaining length of the extension is placed under the skin down the neck to the upper chest area and connects to the neurostimulator.

The neurostimulator contains the power source of my DBS system. It generates and controls the therapy stimulation and is implanted just under the skin in a pouch created under the clavicle.

The DBS system includes an external patient programmer, which I carry with me at all times in case the device is accidentally shut down.

After the final surgery, I had to wait another week before the programming. I couldn’t wait. That week seemed like an eternity.

But the day finally arrived. Dr. Evidente turned the device on and then started giving me the same commands he had given me in the surgery. “Tap your foot, raise your leg, wave, turn the door knob and open and close your fist.”

Then came the real test. “I want you to go out the door and walk down the hall,” he said.

I did it without hesitation.

One of the nurses sitting in the clerical area who had seen me wheeled in, said “It’s a miracle, he can walk again.”

In my next column, I will talk about my experiences since having the surgeries.