Quote:
Originally Posted by madamlash
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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1. A bit sore but nothing Panadol couldn't fix.
2. Some time as electrode on 1 side not put in as well as it could be and consequently gait and balance were much worse.
3.My dyskinesia was awful before DBS but since (9 yrs now) it hasn't returned.
4. Yes I definitely have slept better since.
5.Dystonia has gone. It was excruciatingly painful when it happened before
DBS in my case shoulders, neck and feet were most affected by it.
6. No eyesight I don't think was affected.
7. Lots! Let me start with the fact that my suboptimally placed electrode which caused pretty severe gait and balance issues after DBS was corrected 5 months later with excellent results.
For the first few yrs I managed without ANY P.D. meds. I was on 1,200mg pre surgery.
8. Not much to hate really. My balance isn't the best but part of that is a separate issue to the whole PD DBS thing.
9. That my neurosurgeon had only performed the surgery on 2 patients!
10. I continue to be surprised and very grateful for it every day and don't want to think what life would be like without this amazing gift.
11. Yes!