I’m new here

[NevJ]

Hello,

I was diagnosed in 2011, at age 39. I was able to manage my symptoms quite well until about 18 months ago using only an agonist. I started on Sinemet at the beginning of last year, but within 6 months had increased from 3 tablets a day to 9 and started experiencing wear-off in about 2 hours. In March this year I went for DBS. My tremor is almost nonexistent, but still experiencing some rigidity. My “off” times have improved substantially, but length of “on” times haven’t improved as yet. Unfortunately I haven’t been able to reduce my Sinemet yet. Anyone there who has had a longer experience with DBS?

[park_bear]

I take it you are using the immediate release version which seems to be what is prescribed by default. Try a time released version - Sinemet CR, or the generic carbidopa levodopa ER.

[ktbate]

How often are you getting reprogrammed? Maybe you need more adjustments.

I read that it takes at least 6 mo to a yr. for it to totally be just right. I would love to hear all about your DBS experience. I'm having it done next month. Did you get the Medtronic, Boston Scientific, or Abbott device? Awake or asleep surgery?Karen

[NevJ in reply to ktbate]

Hi, I got the Medtronic, done while asleep. The operation took about 7 hours, which was apparently the quickest the surgeon had done. I spent 4 nights in hospital of which 2 were in ICU. Recovery was relatively easy, not too much pain. I guess my expectations of the initial switch-on (2 weeks after the op) were probably unrealistic - I guess I was expecting a noticeable improvement, but it wasn't noticeable at all. It probably took 3 months before I could notice an improvement. Now 4 and a half months, improvement significant in "off" time but still very dependent on Sinemet.

Good luck with your DBS, please share your experience with me as and when you are able to.

[ktbate in reply to NevJ]

Thank you for responding. I am sorry you have not gotten the response that all of us hope for after going through such an ordeal as DBS. I hope you are one of those people who continue to improve as time goes by.

I have a couple more questions if you don't mind. You are the first person I have talked to that has done Asleep DBS. I was wondering why they kept you in the hospital and ICU for 4 days. I am told that I will be discharged the following morning! What hospital did you go to? Did they try to talk you into doing awake abs? What was the programming like? Did you have any side effects - speech? gait? memory? or? What did you do with your hair - (if you are a woman). Are you glad you had It done? Would you do it again?

Sorry for so many questions but have had to wait for 8 mo.to get in -- waaaay

to much time to worry and think. Your response is greatly appreciated.

[NevJ in reply to ktbate]

Hi, I live in Johannesburg, South Africa, went to Milpark hospital. I never actually discussed awake surgery with the surgeon, my understanding was that his preference was to do it while asleep. I think the length of time you spend in hospital will very much depend on you. When I went for surgery, was was really struggling to walk, which made my risk of falling high. They kept me in hospital until I could get up and walk by my self. During programming they test each lead and contact point to determine which is the best to use. Some of these affected my speech and one made my mouth pull sideways. Obviously, they don’t use those contact points that present bad side effects, so I have no lasting bad side effects. Generally, my speech and gait are substantially improved. No problem with memory. I’m a man and typically wear my hair very short, so I have two small bald patches where hair doesn’t grow on the scar. If I was to wear my hair a little longer though, they wouldn’t be noticeable. Overall, very glad I had it done, no regrets and would do the same again.

Happy to answer as many questions as you would like, so don’t hesitate to message me again if any other questions come to mind. Regards,Neville

[ktbate in reply to NevJ]

Neville, thanks for your response. Johannesburg, wow it is so nice to communicate with someone across the world -- to compare notes and hear about how other countries are doing things. I guess DBS is pretty straight forward. The wild card is the individual differences between patients. Thank you for sharing your experience. I will probably have more questions as time goes by. Karen