I had DBS installed nearly three years ago. The hope was that my medication needs would be reduced and my walking would be improved. I did not have much of a tremor. I am 60 years old.
DBS has not done much to improve my life.
My neurologist mentioned the possibility of having the operation done again.
Has anyone out there had DBS installed a second time? How did it go?
Hi Martini,
I had DBS for the second time in January this year. The first time there was a lead breakage. The first DBS was good for 6 months then it went downhill.
I feel things have gone downhill again. My walking is not as I wanted and I have trouble with Dyskenesia.
Everyone is different and I hope others have had more luck. I hope this is helpful for you.
Jem
Where did you get your dbs too
Hello. I had my DBS done at Addenbrookes nearly 3 years ago. I have to admit that it has not been particularly successful. It worked initially it worked on the left side but the right side has now has recently started to cause severe problems. Both my surgeon and my consultant are some what perplexed by my condition. I was offered for options, first option was to stay as I am, option two was to go back in and tweak what’s already there option three was to put a whole second system in thalamus area. The fourth option which they suggested is to refer me to UCHL for a second opinion. At last my husband and I feel that life might be moving in the right direction.
Since I got back from Addenbrookes on Thursday it has not been quite violent and for awhile I thought that some small miracle had taken place, how very silly of me to have such a thought. I cannot now type, write, chop veg, carry cups etc, etc!Life at the moment is pretty grim.
My faith in the national health system has not been painted and I feel that with patience And time life will become better. I am perfectly fine to the fact that I have Parkinsons and this is the way my life will develop. Many people I know suffer a great deal worse than me and for this I am very thankful.
Tweaking medication and settings can help but I reached the point now where I don’t bother anymore. The fewer drugs I take the worse my symptoms are the more I play with settings worse my dyskinesia. It becomes a case of damned if you do damned if you don’t!
I have a friend who recently had his operation unfortunately because of infection she had to have it removed. I believe that she may be offered a second chance, God bless her! I will update you when I speak to her. Bless you hopefully life will improve for you.
Hi JennyM, I had my DBS fitted at Addenbrookes too under Mr Watts and Mr Buttery four and a half years ago. Recently I had my battery changed and am now supposed to control it with an i pod as and when I can fathom out how to use said item !! Did your friend have a second chance at having one fitted ?
Les
Hi, fortunately mine needs no battery change I charge it myself. My dear friend has decided that it is not the route she wants to take. My tremor gets worse . I have been to UCLH for a second opinion, just waiting to hear what is next!!
Good luck with that JennyM, keep us posted on the outcome. I read in the National Press recently that Nuclear batteries are coming into being with a life expectancy of 100 years !! I am now in possession of a handbook for my i pod controller , all 89 pages of it, I only really need about 15 pages for what I need to know !!
Les
Update: had the second op in January and I would love to say it’s been miraculous, but it hasn’t! My tremor is back and before t seems no matter what I do nothing works. I have had a,period when it seemed to be working, but it was only toying with me! I am back with the doctors next week, wish me luck!
Sorry to hear your news Jenny you must be really deflated. I tweaked the setting up on my DBS a month ago as my tremor had got worse but there isn’t much difference. I too am waiting to get an appointment to see my Neurologist. I believe he has gone home to Australia for a month !! I wish you luck and wellbeing for next week, be sure to come back on here if you have any news.
Les
I suppose on reflection that it could be they didn’t do the settings correctly for your needs. Let’s hope there’s light at the end of the tunnel for you.
Les
I went back yesterday and saw my Prof, he set up another programme for me. Already tweaked it down, but it seems to be making my balance much worse. On the plus side my tremor is much better and my mobility has also improved. So, keep tweaking and be patient!
Hi Jenny, thanks for reporting back. At least there is some good come out of your visit in that your tremor and mobility have improved. I have minor issues with balance and don’t have any serious falls. Perhaps I need to tweak my settings more as i’ve still got a tremor when eating food we will see.
Les
