I remember it like it was yesterday—the day when my doctor told me,”Botox won’t be helpful to you much longer.” I knew it would happen—just not this soon.
My doctor mentioned I would be a good candidate for a surgery called, Deep Brain Stimulation or DBS.
As I began to listen intently to my doctor explain the procedure, questions filled my mind.
I was thinking, “I thought DBS only worked for people who had generalized Dystonia, not secondary. Has this neurosurgeon ever operated on a person with secondary Dystonia before? What are the percentages that the surgery will work?”
My doctor explained DBS is a procedure where they put electrodes in the brain, and I’d be awake during this part. Then I’d have another surgery to put 2 electrical remotes that will be on my chest to control the electrodes. “It’s really quite simple,” he proclaimed, as though he had personally had the surgery. He told me the neurosurgeon in Oklahoma City has done several of these surgeries on Parkinson’s patients, and it has helped them.
DBS could help my left hand, walking, neck and back pain, and I can stop getting 20 or so Botox shots every 3 months. Unfortunately, it probably won’t allow me to talk, and I’m fine with that. I’ve been without a physical voice for 20 years. I may as well wait till God gives me a Heavenly voice.
My doctor thinks It could possibly help 10 to 20 percent of my body. Of course, there’s always a chance the surgery might not work. If that’s the case, I could have the electrodes removed.
After that appointment in October of 2015, I began seeking the Lord. No one could make this decision for me. I get to make the hard, life-changing decisions now that I’m an adult…yippee…not! Honestly I didn’t want to think about the surgery at all for the rest of 2015. I was thinking I could have the surgery at the end of 2016, which seemed far away. But soon my plans would change.
I thought my doctor might possibly forget about DBS by my next appointment in January. Unfortunately, he remembered. I told him I was still considering it, since it’s my brain they’ll be drilling into, plus shaving my hair off. He understood that it was a big decision and would answer any questions I had.
To be honest with you this surgery could change my life in many ways if it works. I always want to see the results as soon as possible. Well, with DBS I’ll start seeing results in a year, because my doctor will have to program the remotes in my chest. This will be a time of trial and error. One of the things I’ve been wrestling with is that I might have to be awake during the surgery. My neurosurgeon told me, “It’s a very big possibility you’ll have to be awake.” He went on to explain that if I am awake there would be a better chance of the surgery working.
I remember thinking, “Seriously, I have to be awake while he’s drilling on my head?”
My neurosurgeon went on to say, “The drilling takes about a minute. It feels like your having a cavity filled, except worse. You’ll feel pressure, but it won’t be pain.” He had to explain more thoroughly, since I have never had a cavity filled.
After that appointment a few weeks ago, I did decide to go ahead and do the surgery. Living with Dystonia right now is very limiting. I’m falling more, and there aren’t very many things I can do with my left hand as it is slowly deteriorating. I’m hoping and praying that the surgery will work and will give me back some dexterity in my left hand.
Since I made the decision, I have had to keep my thoughts and emotions in check. It’s so hard not to think about DBS and worry about whether it will work or not. The first week, I cried countless times about it when I was home alone. I would be listening to encouraging music during the day, and suddenly I’d be crying about the truths I needed to remember that were being sung. When I listen to music, it helps me not to dwell on the outcome of the surgery.
Last week I wrote the paragraph below, explaining what I was facing.
“At a glimpse, circumstances may seem like a fog clouding your vision. Blinded and unable to see what’s ahead, satan slithers through your thoughts, pulling you down an undesired path. Ask the Lord to arrest your thoughts and guide them towards things above.”
As you’re reading this, you might be facing a circumstance you’re unable to control. I don’t know if it’s possible you can relate with the paragraph I wrote. If so, may I encourage you not to dwell on the outcome of the circumstance, but dwell on how you can use this trial to point others to the Lord. I know it’s easier said than done, believe me! Another thing that helps me is to look around me and focus on other people’s circumstances. I like it when others encourage me through a hard time, so why not reciprocate.
Psalm 92:4 has stuck with me through this time. It states, “For thou, LORD, hast made me glad through thy work: I will triumph in the works of thy hands.”
I hope this post has encouraged you today!
I’ll keep you updated with the surgery coming up.