I have heard from several of you concerning the posts I did on the deep brain stimulation procedure I had done to address a benign essential tremor. A lot of you passed this link on to friends or family who have a tremor disorder and I have heard from several who actually have tremors. So, I think an update is in order.
First and most importantly, my hair is growing back at an astounding rate. This leaves some of my friends perturbed. They rejoiced in my hairless state (you know who you are) and are miffed it didn’t last longer. I am inviting you to rejoice with those who rejoice.
Second, my neurologist, who is great, is still in the process of setting my batteries. We started out at 2 volts and 1.8 volts, but I had side effects; notably muscle twitches in my right leg and a resulting walk that would have made Monty Python’s “ministry of silly walks.” So, we took both sides down to 1 volt and have been working our way back up.
I’m currently at 1.8 volts on both batteries. At this level, my tremors are greatly reduced, but not totally gone. I have a persistent, tremor in my left hand, about the level of tremor I would say I had about 10 years ago. Some days my right hand has no noticeable tremor, though some days I can see a slight tremor. What is gone is the overall feeling of shakiness that seemed to run through me.
So, that’s pretty good, but I expect some diminishing results because that happened the last time my battery levels were raised. I have also noticed some slight side effects, some that have been with me since the surgery and some that are new since the last adjustment. My sense of smell and taste has been different, typically more acute, since the surgery. Bad smells seem stronger. And coffee tastes stronger. That kind of thing. And I’ve had balance issues. Not bad and I haven’t fallen or anything, but definitely different. I hope and expect these things to change and get better. They already have some.
I’ve had some minor, but persistent side effects since my batteries were boosted to 1.8. Most days my speech is slightly effected. I can feel a tiny pull on the left corner of my mouth and have even felt my lips numb or tingly a few times. And my left leg doesn’t work the same when I walk. It’s not perceptible to anyone but me and I couldn’t tell you exactly how my gait is different, but it feels different.
Besides my hands, the places where I am most likely to feel the current is in my mouth and legs. So, this isn’t that surprising and the neurologist says that adjusting to the voltage increase is like any any medication increase. My body will learn to tolerate it.
But I also have just a weird feeling throughout my body. I swear that I can feel the current run through the wires that run along my skull and I have this kind of weird feeling in my torso, which is hard to explain. But I just don’t feel normal most days. This is new since the current went up. Yesterday, I felt completely normal and my hands were very solid. I want more days like that. Today, the weird sensation is back, but not as strong. So, again, I anticipate that my body is getting used to the change.
My life is improved in a hundred little ways. I can take notes, sign my name, hold a cup of coffee without splashing it on me (though I still can’t eat salsa without getting it on my shirt, but I don’t think that has anything to do with the tremor), pull down a computer menu, hit the right letter when I’m texting, drink water while I’m lecturing, get the key in the lock easier, sign a credit card receipt and leave a tip on it that is readable, keep things on my fork, take communion, etc. I hide my hands less and am more at ease in social settings, knowing that I can handle things that I used to worry about. At this point, even with the slight tremor and slight side effects, the procedure is definitely worth it. I’ll update this in a few months and tell you if its worth it then.
Praying for your continued progress and complete healing. Thank you for sharing your journey. So humbling. We are all in our Lord’s hands. May His mercies to you be great and your spirit strong as you patiently wait. You are a blessing to many. Galatians 1:24 is true, not only of Paul.
I’ve followed these posts with great interest. My wife has neuropathy and some tremors. It’s not the same as yours, but some of the social issues are parallel and I do appreciate your going public with your struggles.
I had a benign brain tumor removed in 2007. Some of the nerves have never reconnected properly, and I feel some tingling down the side of my head and neck. I’ve learned to simply accept that as part of me, and most of the time I don’t even think about it. I’m amazed our ability to adapt to circumstances beyond our control. I know you don’t like the word “control,” and I think there are some growth opportunities in being able to adapt to circumstances beyond one’s control.
I was interested in your comments about your Dad’s struggle with the same condition. Your Dad and I used to work for the maintenance department at ACC in another lifetime. I have a great deal of respect for him.
Grace and Peace,
Glad to hear that there is some level of improvement for you. Very saddened that your hair has grown back and you haven’t joined the hairless club yet (I’ve been a member for 11+ yrs now. It is by no means an exclusive club, but new members are welcome). Really enjoy reading your thought provoking articles. You are an inspiration to me my friend.
Thanks and blessings to you.
I suddenly realised I never thanked you for allowing me to share your story as part of my class presentation on deep brain stimulation. I had a classmate approach me afterwards and thank me for including your story, as it made what we had been learning a lot more real and personal – and (for her) interesting! In that particular class we tended to skip over the “human” side of what we were learning in favour of the neurobiology and cellular processes (and thank God I’m almost done with it – I have my final exam this afternoon).
Bless you, and I hope the wonderful improvements are permanent. I continue to follow your blog with interest.
thanks for the update. glad my story helped.
Sara Faye and I enjoyed reading about your surgical adventures to help control the tremors, and are eager for an update. As you know, I have been living with Parkinson’s disease for 12 years, first noticed when the right foot — the one with which you control the accelerator when driving — developed a distinct tremor that became visible when communicated through the gas pedal to the “jumping” vehicle. During the past 18 months I have had three spinal surgeries (hopefully the third one worked) and have learned much about hospitals, rehab facilities, nurses, PCA’s and so on. The first surgeon I had pushed the Deep Brain Stimulation for my tremors but my Parkinson’s doc said that is way premature. Besides, tremors are not all bad — I can bounce babies on my knee without doing anything; and I have an automatic diet, just eat whatever I can get to my mouth. Think I’ll wait on doing the brain thing. Sure hope your path gets smooth soon and results outweigh difficulties.