A Journey Through Deep Brain Stimulation Surgery
It was a little more than I had planned.
As a little girl, I had a vivid memory that stayed with me all these years. Why would this tiny memory leave a lasting imprint? Was God warning me of my future? Possibly! I don’t know.
I was sitting on a back pew in the church. I looked at the sea of heads facing the pastor listening to his words. There was one lady that was different than the rest. Her head was bobbing up and down. I remember thinking, “That is terrible to have a constantly moving head.”
Well, guess what? I am now that lady. I have a condition called cervical dystonia. My sister has it also. We receive 20–30 shots of Botox or Dysport in our necks every three months. It paralyzes the muscles to keep the head still, but downsides exist. Sometimes the paralysis causes your head to drop, and you must learn eating, drinking, and swallowing methods. It’s not a perfect fix, and the shots, deep in the taunt muscles, are painful, but it makes life bearable.
After years of successful treatment, my shots quit working several months ago. My head was bobbing up and down like a bobblehead. It made it challenging to do almost everything, not to mention the pain involved. Playing the piano, reading, writing, cooking, crocheting, walking, eating, and everyday tasks were near impossible. I was miserable because I did not know how to navigate this new way of life.
My neurologist said, “I think you have built up a tolerance to the shots, and your next step is deep brain stimulation surgery (DBS).” Just the name alone seemed so drastic. The good news was when he said, “It works!”
Although cataract surgery is common and supposedly successful, mine was not. After five additional procedures, my eye is still not perfect. A little voice went off in my head, “Would I be the exception to the rule concerning DBS surgery?” I seem to be the one who is an exception to the rule, i.e., Amiodarone Toxicity, Multaq Toxicity, gum surgery that took months to heal, which was way more than usual, and numerous reactions to medications.
I was willing to go through just about anything to have my head still and enjoy life. So, despite my track record, I said, “Yes!”
I went to see a specific neurologist specializing in this kind of surgery. I was given reading material so I would know what to expect, and the doctor took the time to explain everything to me.
I would have to get clearance from my lung doctor and my cardiologist. I would have to get an MRI of my brain, a blood test, and pre-op testing. The surgery would proceed if everything fell into place at a specific time. It would take two relatively close surgeries, so I would not have to be off my blood thinner for long.
The first operation would require an overnight stay at the hospital. They would screw my skull into a device that would stabilize my head. The doctor would make incisions on both sides of my head for two holes drilled into the skull. The doctor would feed wires in these holes into the deep part of my brain. During that specific part of the surgery, I would be awake.
When I did wake up, I felt no pain. I was asked many questions and had to follow instructions and repeat phrases. After this part, I was put back to sleep and had wires stuffed into a cavity of the skin outside my skull. The surgery took about 3.5 hours.
The time in recovery was much longer. I’m never good about coming out of anesthesia. Because of this, my daughter and husband were allowed to visit me in the recovery room. I had painkillers, so I was not feeling much discomfort. That night, however, my blood pressure dropped, so the nurses refused to give me pain medication other than Tylenol. It was like putting a bandaid on a broken arm. The night was long, and at one point, I cried.
The hospital made an indication to keep me another night. I refused. If I was going to be in pain, I wanted to do it in the comfort of my home.
These are the parts that were more than I planned:
- When the doctor told me about the two small holes through my skull where the wires would be placed deep into my brain, I did not expect the incisions to be so large. It looked like a headband across a large section of my head.
- I had a headache every day.
- My blood pressure ran so low that even PT was limited.
- I had to use a walker because my low blood pressure caused me almost to pass out every time I stood.
- From all the surgeries and illnesses before DBS, I underestimated the trauma my body was recovering from. I’m finding it difficult even to write this piece.
- My head still shakes, which I expected, but I didn’t realize how the rattling of my brain exacerbates the headaches.
Would I do it again? The verdict is still out. I won’t know anything until it’s all steps are accomplished. In my head, that little voice is cautioning me not to get my hopes up too high. But if it all works, it is a resounding yes!
I cling to this scripture:
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. (Jeremiah 29:11, ESV)
I am already four weeks past the first surgery. The second surgery story is forthcoming.
