Deep Brain Stimulation: The Sequel

Very few sequels are as successful as the original. Whether it is because they added new characters, a darker villain or the situation has changed, revisiting a story that has already been told, usually sucks the big one. But I have high hopes for my Deep Brain Stimulation (DBS) Part 2.

My Story began on March 2010, when I went into a Neurosurgeon, Dr. Christopher Duma, at Hoag Hospital in Newport Beach, CA. I had felt hopeless, as the Parkinson’s was gaining strength and speed within my body. He detailed the medical procedure, “We break the surgery up into three operations with one week intervals. We make a small incision on your hairline, and place the lead. You will be awake so we can make sure that we have the correct location to give you the best results with few side effects.” I felt nauseous. He continued explaining as the big screen behind him turned on and began playing a video. His words began meshing together and my vision got blurry as I began to cry.

I could not process the probability that this surgery was going to happen. I had been through hell and now this. I was bitter and resentful. I had made a new life for myself, and once again, my health was my greatest demon. I cannot remember my response to Dr. Duma, I just remember putting my sunglasses on and grabbing a handful of tootsie rolls off a desk as I walked through the waiting room. I reached for the door, feeling the cold metal of the handle; I glanced back at the receptionist who was on the phone. I was annoyed that she could not feel my pain. I was once again, alone.

I got through my brain surgeries like I did with every other medical drama that had been thrown at me…. with dedication and determination… and yet utterly fashionable… never underestimate the power of a sassy hat or scarf.  DBS changed the path of my disease completely and I finally felt a little more in control of my life. Other than occasional battery replacements, I believed that this part of my life was complete. No need to waste any more energy by worrying about it. Until today, I realized my story would have a turn, one that I didn’t plan or anticipate. A DBS sequel was in the works…. *Tense music interlude.

The week before I went to Europe I was having trouble controlling my Parkinson’s symptoms on the right side of my body. My neurologist decided to raise the voltage of my stimulators to see if I could get some relief. An hour after the adjustment, I was sitting at my desk when I feel an electrical shock run through my body. It was so disruptive that it made me jump. Ouch! Then a moment later, another jolt. I grabbed my phone and tried to dial the number of a Nurse Practioner who was working in the room next to me. I could barely think straight, let alone work my fingers.

After detailing my experience, it was decided that one of my wires might be kinked, which is not allowing the electricity to go from the stimulator in my chest leading up to my brain. An x-ray would confirm this theory, but there was one problem, I was leaving for Europe the following day. We decided that since I was not going to postpone my trip, there was no need to get the scan done until I returned home. We lowered the voltage in my Neurostimulator until the shocks were manageable, and I hopped on a plane heading to London.

The next 2 weeks were interesting, to say the least. Imagine trying to pretend that you were not getting shocked as you met the crew from the Parkinson’s UK office, that you didn’t just lick a battery as you talked to people you met while on vacation, or try to stay focused as you applied make-up while attempting to avoid biting your lip as the electrical current made you grit your teeth.   By the end of my trip, I couldn’t take it anymore… I turned off my DBS system. Although my body had a break from my electroshock adventure, my Parkinson’s symptoms came back with a damn diva attitude.

As the Perky Parkie, I tried to take this misfortune in stride…. to find a silver lining. After my adventures to the Parkinson’s UK office, I have realized how truly blessed I am to have the options and the access to various Parkinson’s treatments available. In one day, I was able to get an x-ray done, had a radiologist review it, received a copy of the scan, met with my Neurologist, had one of the amazing Medtronic representatives confirm the diagnosis and scheduled a consult with my Neurosurgeon for the following week. Now if that isn’t as cool as finding an uneaten gummi bear at the bottom of your purse, then I don’t know what is!

What happened you asked? The lovely x-ray picture seen above not only reveals my awesomazing skeletal structure… which rivals that of a Greek Goddess… but it also flaunts a break in my left side wire… that explains the throw-your-blow-dryer-in-a-tub-of-water like shocks. The bad news: The break is above my connector, so in order to fix it, my old DBS unit will need to be pulled and a new system placed…meaning more brain surgery. The silver lining: I didn’t break my wire due to an injury or blunt force. I broke it because of my active lifestyle! Doesn’t matter that I have Parkinson’s disease…. I am still loving life and I have the wire to prove it. So get that popcorn ready, because a Deep Brain Stimulation sequel is coming to a blog near you. Thank you for all the love and support I have been receiving! I will keep you all posted.