I just had the surgery a little over a month. The Honeymoon only lasted a week for me. I get the DBS turned on and first programming on April 19, 2012. I can't wait.
Purposes:Parkinson's Disease and Dystonia(Started Jun 28, 2010)
Date
Dosage
Parkinson's Disease
Perceived effectiveness
Dystonia
Perceived effectiveness
Side Effects
Adherence
Burden
Jan 12, 2012
One time
Major
Major
None
Always
Not at all
Nov 18, 2010
One time
?Can't tell
?Can't tell
Mild
Always
Not at all
Side effects:
Dizziness, Neck and Shoulder muscle soreness
Date
Jan 12, 2012
Advice & Tips
My DBS Neurostimulator FINALLY kicked in after close to one year of monthly programming visits to the DBS clinic at Robert Wood Johnson medical center. I am doing MUCH better now. I have not reduced my meds but that's OK. It has brought me back to life and some days I almost feel like my old self.
Cost
$25-49 monthly
Date
Nov 18, 2010
Advice & Tips
AS OF 11/2010: Right now I am in the middle of programming sessions for the IPG battery in my chest. I go once a month to a "DBS clinic" Robert Wood Johnsohn Medical Center in New Brunswick NJ, USA. I see the DBS programmer and a neurologist. Even though I only have PD on my left side, it is quite severe. Unfortunately, the neuro has INCREASED my meds and the DBS programming has been very very slow - each time I get the voltage increased the PD seems to "compensate" It has been 5 months since the surgery and so far the benefits have been minimal. One unexpected positive effect has been reduced sense of bladder urgency. The surgery itself was not bad since they only had to install the wire lead on the right side of my brain.
Allowed me to reduce my sinemet dosage 80%, eliminated agonist and amantadine, since have restarted to reduce sinemet even further.
My balance and speech has declined but cannot say whether due to DBS or progession of disease as it's been 24 years since diagnosis.
I recommend everyone who has PD to at least be evaluated by a neurologist and neurosurgeon to see if they are candidates.
Date
Nov 17, 2008
Advice & Tips
I recently had DBS in Denver, it was the best decision concerning my health I have ever made. I can now walk, my tremors are essentially gone, I now have my balance, and do not fall any more.
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