Each person’s experience with DBS is unique, and in this posting today, I’m reporting on my own personal experience.
Perhaps I’ve given Deep Brain Stimulation (DBS) surgery a bad rap. I had high expectations and was disappointed with the outcome (see Uneventful Brain Surgery in my blog).
My primary symptom was tremor before I had DBS surgery in May 2005. I was diagnosed with Parkinson’s Disease (PD) in May 1996. It seems like everything happens in May.
With the two year anniversary of my DBS rapidly approaching, I’ve tried to analyze the outcome from my perspective.
What’s Better?
I definitely have less tremor and sometimes no tremor at all.
When my medication is working, I now have an expressive face, whereas before I had a blank PD mask.
What’s About the Same?
My PD voice/speech is often about the same as before surgery—hoarse and low volume. But people don’t ask me to repeat myself as often as before DBS, either because DBS helped my PD voice or they are getting used to it.
On the downside, since DBS, I sometimes slur my words.
What’s Worse?
The worsening of my PD symptoms was not necessarily due to DBS but possibly resulting from the progression of PD. DBS does not halt the progression of PD.
The wires from the DBS were caught in the scar tissue. This entailed returning for another surgery in November 2005 to untangle the wires in the scar tissue. More scar tissue developed with this surgery. This resulted in a painful pulling of my neck to the right.
Dyskinesia, those involuntary leg and arm movements, have appeared since DBS. I never experienced them before surgery.
I’ve stopped playing my accordion because of dyskinesia, with arms and legs flailing and squirming on the chair, and poor finger dexterity.
My handwriting has worsened, and sometimes it’s difficult to hold a pen, even to sign my name. I am grateful that I can continue to type.
While my tremor has fortunately disappeared, my stiffness and rigidity has appeared in its place.
I’m taking the same amount of medication or more since DBS.
I had to leave my beloved employment as coordinator of volunteers at a large local hospital because of PD in May of 2006 (another one of those May days). I was hoping that DBS might help me to continue work for five years, but unfortunately I was only able to continue work for nine months after DBS.
Why I’m Still Hopeful?
It appears that some of my DBS-related problems are because of not being optimally programmed (although I participated in about half a dozen post DBS programming sessions). I am hopeful that when I am optimally programmed that my quality of life will improve (see Put to the Test and Perhaps I’ve Got My Wires Crossed in my blog).
Yoga stretches have greatly improved the neck pain and pulling of the wires caught in the scar tissue caused by DBS. I only wish I knew this before the DBS surgeries. When I asked about stretches that might be helpful, the only advice that I was given was “stay away from there.”
While I personally would not have DBS again, I would encourage those with advanced PD to consider it since DBS appears to be the only option currently available. I believe that we should be informed of the potential benefits and risks of DBS. We all deserve to make informed choices and have hope for positive outcomes.
Each person’s experience with DBS is unique, and in this posting today, I’m reporting on my own personal experience.
Perhaps I’ve given Deep Brain Stimulation (DBS) surgery a bad rap. I had high expectations and was disappointed with the outcome (see Uneventful Brain Surgery in my blog).
My primary symptom was tremor before I had DBS surgery in May 2005. I was diagnosed with Parkinson’s Disease (PD) in May 1996. It seems like everything happens in May.
With the two year anniversary of my DBS rapidly approaching, I’ve tried to analyze the outcome from my perspective.
What’s Better?
I definitely have less tremor and sometimes no tremor at all.
When my medication is working, I now have an expressive face, whereas before I had a blank PD mask.
What’s About the Same?
My PD voice/speech is often about the same as before surgery—hoarse and low volume. But people don’t ask me to repeat myself as often as before DBS, either because DBS helped my PD voice or they are getting used to it.
On the downside, since DBS, I sometimes slur my words.
What’s Worse?
The worsening of my PD symptoms was not necessarily due to DBS but possibly resulting from the progression of PD. DBS does not halt the progression of PD.
The wires from the DBS were caught in the scar tissue. This entailed returning for another surgery in November 2005 to untangle the wires in the scar tissue. More scar tissue developed with this surgery. This resulted in a painful pulling of my neck to the right.
Dyskinesia, those involuntary leg and arm movements, have appeared since DBS. I never experienced them before surgery.
I’ve stopped playing my accordion because of dyskinesia, with arms and legs flailing and squirming on the chair, and poor finger dexterity.
My handwriting has worsened, and sometimes it’s difficult to hold a pen, even to sign my name. I am grateful that I can continue to type.
While my tremor has fortunately disappeared, my stiffness and rigidity has appeared in its place.
I’m taking the same amount of medication or more since DBS.
I had to leave my beloved employment as coordinator of volunteers at a large local hospital because of PD in May of 2006 (another one of those May days). I was hoping that DBS might help me to continue work for five years, but unfortunately I was only able to continue work for nine months after DBS.
Why I’m Still Hopeful?
It appears that some of my DBS-related problems are because of not being optimally programmed (although I participated in about half a dozen post DBS programming sessions). I am hopeful that when I am optimally programmed that my quality of life will improve (see Put to the Test and Perhaps I’ve Got My Wires Crossed in my blog).
Yoga stretches have greatly improved the neck pain and pulling of the wires caught in the scar tissue caused by DBS. I only wish I knew this before the DBS surgeries. When I asked about stretches that might be helpful, the only advice that I was given was “stay away from there.”
While I personally would not have DBS again, I would encourage those with advanced PD to consider it since DBS appears to be the only option currently available. I believe that we should be informed of the potential benefits and risks of DBS. We all deserve to make informed choices and have hope for positive outcomes.