I'm considering Deep Brain Stimulation. A... - Cure Parkinson's

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I'm considering Deep Brain Stimulation. Anyone out there have this procedure? Good results or not?

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27 Replies
compucure profile image
compucure

I had DBS in 2011. Be patient as it takes time to get the settings right. Best thing for me was to have dyskinesias eliminated and cut down on my medication. Would I recommend it ? Yes 100%!! Tony x

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shaky in reply to compucure

Thanks, Tony. The local neurosurgeon I'm seeing uses a new procedure pioneered at the University of Oregon. Do you know of this procedure?

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compucure in reply to shaky

No I have not heard about this. Tony

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shaky in reply to compucure

Thanks, Tony

IF you enter DBS in the search window on the upper right side of the home page you can review the many threads we have generated on this important issue.

Sadiesadie profile image
Sadiesadie

DBS was the best thing I have done! It takes time to get the settings right but worth it!

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shaky in reply to Sadiesadie

Many thanks, Sadie.

sunnysd profile image
sunnysd

I too had DBS in 2011. I still can't say it has benefited me greatly. I did not have much tremor and surgery is not guaranteed to help w/ gait, Of note is that I am not stiff in the morning before meds!

shaky profile image
shaky in reply to sunnysd

Thank you for the help.

Jash profile image
Jash

My DBS was last June. I had the Clear Point general anesthesia real time MRI surgery. My tremor was so bad that I couldn't button my shirt or zip my jacket, I stopped going to restaurants when I had to use a straw to eat soup. I can now function more normally. I'm still in the process of adjusting meds and stimulator. Post DBS, however, I have balance issues I didn't have before, occasional freezing that I didn't have before as well as some memory issues I didn't have before. All things considered, I still think it was worth it.

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shaky in reply to Jash

Jash: Thanks for the candor. Very helpful. Good luck.

S

mistydog1 profile image
mistydog1

I might suggest to also watch a CD that a company called Medtronic puts out for free. They manufacture the DBS device. You can go to medtronicdbs.com for a copy or call them at 877-438-3574 to discuss DBS

shaky profile image
shaky in reply to mistydog1

Thanks, Misty. I've seen the CD, Fascinating stuff but I'm still creeped out thinking about someone drilling a hole in what's left of my brain.

Kadie57 profile image
Kadie57

I had dbs April 2012, best thing I ever did, hang in there it takes awhile to set, a office visit weekly for a few weeks, but it stopped my shaking as it is intended to do.......this does not cure Parkinson, meds work better I shook 24/7 for 10 yrs. It was as if I had been given new life, just touching the effected areas in the brain I was med free for almost 4 weeks. the result is immediate and amazing. Do your reaseach, look up meditronic dbs they have info to watch, ASK QUESTIONS, It is not an easy surgery, but well worth it. Gods blessings to you. Kadie

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shaky in reply to Kadie57

Thanks, Kadie. Very encouraging. I'm grateful for your response.

s

Kadie57 profile image
Kadie57 in reply to shaky

your welcomed, we all need encouragement -- here's to better days ahead and no more rock n rolling unless we want to dance!!

driller profile image
driller

Good morning from Florida, I member of our suport group had it done he is so happy he is having the other side done.

Good luck

ERIC

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shaky in reply to driller

Which is another reason to join a support group. Thanks, Eric.

Bill Luening

driller profile image
driller in reply to shaky

Good LUCK

artist profile image
artist

I had DBS on rt side in 2010 then again on the left side in 2012,,I'm so glad I had them done. As an artist, I was unable to paint or draw anything...after my first DBS, I was able to paint again...and haven't stopped. blessings to you and I'll be praying you have success just as I did.

shaky profile image
shaky in reply to artist

Very encouraging, Artist. Thank you so much.

Bill L.

98Rob profile image
98Rob

DBS was the best thing I ever had done. I had it done i n 2007 and I am now on a very low dose of medication. I have had PD since 1995.

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shaky in reply to 98Rob

Thanks, Rob. Very helpful.

Bill L.

lanep-since03 profile image
lanep-since03

March 1st it will be a year since I had DBS surgery. Cut meds in half !! Surgeons & staff @ Wake Forest Univ. Baptist hospital in NC were great!!! Would I do it again? You bet!

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shaky in reply to lanep-since03

Thanks for the testimonial. all of these positive responses are making me feel better about the prospect of dbs surgery.

dottie profile image
dottie

I have a very rare setup; my neurologist calls it : "a nasty combination of dystonia and parkinsonism". Spent a year and a half with unsuccessful programming, but with an "on" dystonia that was progressing. We didn't know. I finally got on a plane to go cross country to a genius of a programmer which helped alot, and with my neurologist's blessing. I have a great neurologist, neurosurgeon and programmer. Yes I would do it again, it's like a trumped up dentist appointment. Everybody said I was so brave, but since I can't tolerate many meds, DBS was a good alternative. I have been on Amantadine which causes swelling of the lower limbs with diabetes-like wounds. I am now on Rimantadine for people who have this unfortunate side effect. My doc and I will probably change back to a small dose of Requip. If anyone wants to to talk further like on the phone, let me know. I went to the best of the best in Boston and am profoundly grateful to all three. GOOD LUCK! PS There is an initial period of euphoria that most people go through. Be forewarned. It doesn't last forever. Then you go to work on it. I agree with "be patient". You also have to be a squeaky wheel and advocate for yourself. Each PD patient is different.

You are in my prayers.

ive had bad and good reesults