"Looking Back", After 6 Years, I Would Have DBS Again-- "The Dance"

When I consider the alternatives, and the gains that resulted, I would do it all again.  Deep Brain Stimulation Surgery was risky and you could argue, ill-advised.  Let me rephrase.  It was generally thought to be not recommended for a Parkinson's Plus Syndrome, such as Multiple System Atrophy.  However, I had the best neurosurgeon on earth.  I really believe that.  I trusted him and understood his ability and experience level.  He explained the risk of a bleed and possible death, but also told me that I had the chance of extending my life and giving myself a better quality of life to share with my most important and priority above all priorities-- my wonderful wife, Karrie, my fantastic sons, their wonderful spouses and these beautiful grandkids!  Wow, am I a wealthy man in all the right ways-- the people in my life.  I am a simple man with simple values.  My brain disease has changed all of the superficial and practical abilities and access to my career and mobility.  I miss driving, working, leading, teaching and organizing people.  However, what really counts is the quality of life.

Deep brain stimulation surgery put implants in my brain and chest, along with cables in my neck which enabled me to move bigger and keep moving better than I would have, for a much longer time.  I have already gotten my money's worth.  It has helped me six years and it didn't do what the naysayers said it would-- it didn't kill me in a year, as had occurred in the case of two individuals I read about who had Parkinson's Plus Syndrome and died within the first year of surgery.  I learned while earning my Educational Doctorate that statistical significance goes up with the number of subjects and the controlling of variables.  This was too small a sample size and over generalized, as far as I can determine.

My surgeon knows the brain and knew that I had an unusual case with a great deal of abnormal involuntary movement issues.  This surgery didn't cure my disease.  I still have a degenerative process progressing, and now have more specifics about my diagnosis.  I have Corticobasal Syndrome and Multiple System Atrophy. I am confident in my movement disorder specialist who has done such a thorough job of assessing my symptoms and provided the best possible treatment. What a great Doc!  Also, going back, I originally had such a wonderful neurologist who took care of me for 10 year and recommended that I be evaluated for DBS.  My PC physician is wonderful and manages my case and all the variables.  The specialists I have that treat me for swallowing, speech, cardiac, urinary and digestive troubles all play a big roll.

I am blessed.  I am here and my family surrounds me.  We have a great church, and loving friends all over.  I would do it again.  As Garth Brooks says in The Dance,

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance.

-- Patient-Online