DBS effectiveness.

[cjCardio53]

Was DBS effective in treating your pain, stiffness, dyskinesias? Did it have any affect with freezing? I find myself taking more and more meds, and new treatments are taking to long to get here.

[katrinjessy]

ooh

[108Avery]

I had less stiffness after surgery. Freezing is happening now years later. And I stopped meds so no dyskinesia. It helped straighten my spine and lessen tremors. I would try ozone therapy first in hindsight.

[cjCardio53 in reply to 108Avery]

Thanks.

[Pelley in reply to 108Avery]

When I approached DBS I had been diagnosed 5 plus years and was taking as many as 32 pills a day! Requip, Sinemet, Comtan, etc and loosing ground against progressions. I was 48 when diagnosed after extensive research into (what I have isn't) at Mayo Clinic in MN. It was quite new at the time and remember talking with a Medtronics rep asking how it works and he blank face looked at me and said "We don't really know".

Due to post surgical infections it took a total of a year and five procedures (3 different units and wires moved to both sides of my chest and many sutures across my shaven head). In retrospect I'm not certain how I persevered through those times but I will tell you I'm glad I did.

I am now 68 and although I believe it has a few shortcomings, it has extended the quality of my life and slowed my consumption of many pills in my life since. I currently take 3 Sinemt every three hours around the clock and for the most part have been quite pleased. I have had two and am scheduled around Christmas for a third battery replacement and sometimes feel like they should just put a zipper in my chest.

It has helped with many progressions but not w/o trial and errors. It all boils down to the programmers input and understanding of what progression bothers you the most. It certainly isn't a "fix all" but it has extended my usefulness and enjoyment while living on this rock.

I have been through more programmers and "trained" more Neuro residents at Mayo than I care to remember, but over-all there's something reassuring about being on a first name basis with one of the best department in the world.

I have no regrets and encourage all who have the wherewithal to boldly approach the procedure for what it is. I believe someday one of our skulls will be in the case at a medical museum next to the ones with broken holes from crude lobotomies with people looking and saying "OH my..... How barbaric!"

It has lengthened my life and enjoyment but for the programmers are the key after the Neuro placement.

[cjCardio53 in reply to Pelley]

Thank you for sharing your story.

[whitdemo]

My husband had it 3 months ago. It has gotten rid of his tremor( which was constant and signifigant. and relieved stiffness and slowness . But I dont think it helps much with dyskonesia... but not sure. However , its my inderstanding and that if DBS is effective for you you can go down on meds which sometimes the side effect is dyskonesia.

we went to UCSF in San Fransisco, Dr Star was our surgeon, and one of the best in the world. We had a great experience.

[cjCardio53 in reply to whitdemo]

Thx for your input.