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Old 04-13-2013, 10:57 PM
madamlash madamlash is offline
Member
 
Join Date: Feb 2010
Location: Southern California
Posts: 167
10 yr Member
madamlash madamlash is offline
Member
 
Join Date: Feb 2010
Location: Southern California
Posts: 167
10 yr Member
Default Anyone With DBS? Please give me some feedback.

Anyone With DBS? Please give me some feedback.

I could really use some feedback.

I was diagnosed 12 years ago. I've not had good results with any meds other than Carbidopa-Levodopa 25/100 and I have to to take 1.5 tablets every 2 hours. I know that's a pretty high dose. As a result the dyskinesia has really set in lately. My balance has noticibly worsened.

I also had a nasty health downturn right after Christmas that lasted almost 3 months and put me in the hospital twice. I have never been sick, enjoying remarkable health throughout my life up until this 3 month bout. The doctors are still not sure what happened... maybe the flu but whatever it was resulted in keeping me in bed, not being able to eat, sleep... miserable. I'm finally over most of that but it has left me in weakened condition. I also have developed numbness in my fingers and toes just in the past month. My blood pressure fluctuates wildly from a low of 76/54 to a high of 190/125.

My neuro has mentioned DBS at every visit for the past year or so. I pretty much just waived that option away feeling that it would prevent me from participating in clinical trials and possibly keep me from getting some new, remarkable treatment.

After this health scare, I have opened my mind to DBS but frankly am quite frightened by it. I'd love some feedback from anyone here.

Some of my questions are:

1. How did you feel during the days right after the initial placement of the wires? Were you able to do any work (light work like on the computer)? I have a job that I love and I am hoping to not have to take too much time off of work.
2. How long was it before you could do light work?
3. How well does DBS work to get rid of dyskinesia?
4. I've read that DBS makes you sleep better. True?
5. I have nasty muscle cramps. Does DBS help?
6. Did it effect your eyesight?
7. What do you like about DBS?
8. What do you hate about it?
9. What do you wish you had known before you had it done?
10. What about it surprised you?
11. Would you do it again?

Thank you all for your input!
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