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Questions for those with DBS

DBS

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#1 PBar

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Posted 25 September 2013 - 03:20 PM

I had a DBS installed in August and just had my second programming session on Monday and I'm wondering if I'm expecting too much or just being impatient.

 

For those of you who have one installed:

 

  1. How many sessions did it take before you saw noticeable results?
  2. How many sessions did it take before you started reducing your meds?
  3. Did it help for non-tremor issues?
  4. Do you feel tightness when you move your head certain ways as if the wires are holding you back?

My tremor has disappeared, but my walking/balance/freezing is as bad as ever and I'm still at the same med levels.

 

Thanks



#2 Rogerstar1

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Posted 25 September 2013 - 08:07 PM

I had a DBS installed in August and just had my second programming session on Monday and I'm wondering if I'm expecting too much or just being impatient.
 
For those of you who have one installed:

  • How many sessions did it take before you saw noticeable results?
  • How many sessions did it take before you started reducing your meds?
  • Did it help for non-tremor issues?
  • Do you feel tightness when you move your head certain ways as if the wires are holding you back?
My tremor has disappeared, but my walking/balance/freezing is as bad as ever and I'm still at the same med levels.
 
Thanks


My improvement was immediate...on the operating table actually. My DBS was un August of 2012.
My Sinemet dosage went from 17 to 20 25/100 pills a day to three or four taken by the half pill.
DBS eliminated my tendency to 'freeze'.
No neck tightness post surgery per se but aches and pains do persist.

regards fr. Roger

Edited by Rogerstar1, 25 September 2013 - 08:08 PM.


#3 KimAgain

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Posted 29 September 2013 - 04:50 PM

Not to be too nosey, but... do you have breasts?  I myself am of the female persuasion and, the pulling thing was definitely an issue for me for a long time (DBS surgery almost 4 years ago now)... and, I'm hardly a busty gal (B cup).  Seems to me that, in the final analysis, the surgery is only part of the battle, getting a good adjustment is the other part.

 

Good Luck!

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#4 Rogerstar1

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Posted 14 October 2013 - 02:29 PM

 

 

 Seems to me that, in the final analysis, the surgery is only part of the battle, getting a good adjustment is the other part.

 

Good Luck!

Kim

 

Could not agree with you more, achieving the the optimal adjustment is the trick.  With two wires implanted, each with four electrodes, and each electrode allowing four modulations (amperage. pulse, 'frequency/intervals' and one other, the name of which escapes me just now) follow-up is critical.  It is hardly a matter of just cranking up or down the amperes.  And it is not rocket science nor brain surgery as the saying goes, but as much an art as a science.    And one involving a moving, progressive target. And the  neuro  wants to see me less frequently rather than more so each appointment can mean a six to ten week experiment.  Now off to do my gutters, a task unthinkable pre-dbs as the world shrank. 


Edited by Rogerstar1, 14 October 2013 - 03:25 PM.






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