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-   -   My DBS Experience (https://www.neurotalk.org/parkinson-s-disease/234421-dbs-experience.html)

stevem53 04-07-2016 08:09 AM

Quote:

Originally Posted by TryingMyBest (Post 1207238)
During the programming when my settings were too high, my mouth would twist and my speech was terrible. With your battery turned off your batteries should last a long time!

Yes..If this continues, they will die like a battery in an old chevy thats been sitting for a long time..LOL

bluesking 04-07-2016 10:56 AM

DBS - Conscious vs. Unconscious
 
Does anyone have experience with DBS surgery done while
being unconscious vs. the conscious approach (which I presume
is how these recent postings were done)?

I'm told the 'conscious' surgery is significantly more effective than
the alternative.

stevem53 04-07-2016 01:51 PM

Quote:

Originally Posted by bluesking (Post 1207279)
Does anyone have experience with DBS surgery done while
being unconscious vs. the conscious approach (which I presume
is how these recent postings were done)?

I'm told the 'conscious' surgery is significantly more effective than
the alternative.

My fiance has Post-encephalitic Parkinsonism..She has had two DBS surgeries..One in 2003, that was removed in 2012 because of a lead that was put in the wrong place..She had a second one in 2013 for severe dyskinesia, and dystonia..The surgery was a success, however she gets a tad of dyskinesia now and then lately..She has very narrow blood vessels, and the only place they could find a place to stick the picc line in, was in her foot..So she wasn't comfortable with that , so she asked them to knock her out..I couldn't tell you if her surgery would have been more successful if she was awake, but I can tell you from my experience, that communication with the DBS team during surgery is vital in my opinion..Her first DBS was in the STN, and her 2nd surgery was in the GPI area of the brain

GerryW 04-07-2016 02:39 PM

Quote:

Originally Posted by bluesking (Post 1207279)
Does anyone have experience with DBS surgery done while
being unconscious vs. the conscious approach (which I presume
is how these recent postings were done)?

I'm told the 'conscious' surgery is significantly more effective than
the alternative.

This is what I will probably choose if it comes to that.

https://www.youtube.com/watch?v=i47FViy8dJg

eds195 04-07-2016 04:14 PM

Thanks Gerry...very informative video, worth watching.....

TryingMyBest 04-08-2016 01:15 PM

Quote:

Originally Posted by bluesking (Post 1207279)
Does anyone have experience with DBS surgery done while
being unconscious vs. the conscious approach (which I presume
is how these recent postings were done)?

I'm told the 'conscious' surgery is significantly more effective than
the alternative.


You want the most effective method. This is not the time to play it safe. It is too important. Choose the awake surgery. Then again it is a personal choice. Better asleep surgery than not at all.

TryingMyBest 04-14-2016 07:08 AM

Quote:

Originally Posted by stevem53 (Post 1207007)
Thanks Peony..I remember you too..It does feel like a miracle..I don't know what my fate is going to be but they told me that I was way past the honeymoon period..I hope this phenomenon that I am experiencing continues on, but pd is progressive, and chances are sooner or later I am going to have to have this thing turned on..But for now I am going to enjoy my new life, and see what happens

The biggest change is emotional . Never got depression but boy, did I have apathy!
Apathy is having no interest in doing anything. Very much a new lease on life!
Planning to travel again. Lined up some trips.

2nd programming took 10 min and he improved my tremors. Dr said there are literally thousands of combinations to do so he will get there 100%. I'm at 98%. Can't complain. I know someone that has DBS almost 15 yrs now and still doing well!

Dan Murphy 04-14-2016 08:22 AM

Thank You Trying My Best
 
My last visit with my Neuro he said it is time to start considering DBS. I never gave any thought about having this operation and the words hit me hard. My original thoughts were no way. I hadn't read any real positives from people that had the operation and did read there were mobility benefits but cognitive detriments. I did not want to go on as a Zombie. I have always been an optimist and lately your term "apathy" is applicable to me. That you have had success is a motivator and I am going to get a second opinion about having the operation in 2 weeks. Should I consider having the operation at the Mayo Clinic?
Thanks again for your post.

TryingMyBest 04-16-2016 06:53 AM

Quote:

Originally Posted by Dan Murphy (Post 1208013)
My last visit with my Neuro he said it is time to start considering DBS. I never gave any thought about having this operation and the words hit me hard. My original thoughts were no way. I hadn't read any real positives from people that had the operation and did read there were mobility benefits but cognitive detriments. I did not want to go on as a Zombie. I have always been an optimist and lately your term "apathy" is applicable to me. That you have had success is a motivator and I am going to get a second opinion about having the operation in 2 weeks. Should I consider having the operation at the Mayo Clinic?
Thanks again for your post.

Mayo Clinic - Yes, and good luck!

stevem53 04-18-2016 04:31 PM

I have been a fisherman for 40 years..Yesterday was my first day out since August 2014..This is what DBS did for me

I am on the left, and my good friend Kevin is on the right

https://scontent.xx.fbcdn.net/hphoto...93&oe=57AAE3D8

https://scontent.xx.fbcdn.net/hphoto...c5&oe=57BAE936

https://scontent.xx.fbcdn.net/hphoto...33&oe=57B2420D

https://scontent.xx.fbcdn.net/hphoto...8e&oe=57BB8C10


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