Just noticed your post.
I'm 64, having being diagnosed in 2011. I had DBS by Medtronic inserted February last year and it took 3 months for the infection to manifest itself. I was quite seriously considering not having it re-inserted, given the side effects I was having, including: choking, restless legs, voice almost gone, inability to swim, extreme tiredness, stopped driving myself, balance and gait both rubbish, etc, in favour of reduction of major tremor in my left hand, slightly less in the right. The surgeon, in Southmead/Frenchay in Bristol, UK, out of the blue suggested a better device, from Boston Scientific, which was possible to wirelessly recharge once a week, and stimulator lasting 25 years. It has been with me since August 2014, on the opposite side of my chest, but the programming has proved no less problematic (I've lost count of number of times I've been back) although it is described as 'more sophisticated', I feel it's capabilities have not yet been explored. Maybe it is too untested, and much of the programming is little more than guesswork.
I too have had general anaesthetic, right from the start.
There have been many problems, ranging from the need to have botox injections every 3 months, (to try to stop extreme clamping of both eyes), to trauma introduced near the site of the first device,which has resulted in fistulas developing in my neck and around my collarbone.
Maybe you are right in your suggestion that it all depends on luck of the individual!
I hope that my experience has been of some use.
I am 66 years old, and had bilateral thalamic dbs (Medtronic) last August at the John Radcliffe Hospital, Oxford. I am on 2X Sinemet 125 mg three times daily (same as before the op). Having the operation whilst conscious for part of the procedure was interesting, but not as painful as I had anticipated.
Nine months on and I am very pleased with the results, which are for me: increased ‘on’ times, with less of a crash between them - at times I have even forgotten to take the tabs; both mood and mobility improved; tremor much improved – but still evident slightly when stressed. At my best I can now repair watches, write neatly and legibly, use a keyboard and phone, and carry a full glass in each hand. I have slight dysarthria as a result of the DBS, but, for me, the benefits I have experienced far outweigh this inconvenience.
I’ve been back to the JR three times for ‘tune-up’. My Nurse Practitioner has been brilliant, as were all the staff there.
just had my first dbs battery change at southmead hospital all went well till i come round ,was shaking aggressively to my astonishment my new dbs battery was switched off! nurse thought it was due to high temperature once i managed to tell her my dbs was off she phoned down to pd nurse she was there in 10mins felt like a life time ,re calibrated new dbs generator all good ! dbs i do not know what sort of place i would be in with out it ! should have seen nurse face when i got turned back on she was amazed what it dose .BIG THANKS TO ALL THE NURSES SURGEONS & STAFF AT SOUTHMEAD HOSPITAL.Just let me know next time when i be turned off lol
Don't like the sound of that, Gus - all sounds a bit scary to me!
I'm due to have my DBS (the GPi version) on 10th June also at the John Radcliffe, Oxford. I just hope I'm doing the right thing - one minute I feel confident about the op (mainly due to the positive feedback from certain contributors to this - and other - forums) and the next minute I feel hesitant.
Every day it seems something new is thrown into the equation - first it was Rytary (although there seems to be mixed results by all accounts); then I read all about mucuna pruriens but all the information seemed to come from 2 or 3 years ago and appears to have fizzled out as it couldn't be regulated (or words to that effect!); - and now, today, very positive feedback from stem cell treatment. It appears that, during the first two years of trials, no significant results were forthcoming - so the trials were abandoned - BUT, it has now been discovered that it can take several years for the cells to "bed in" and many recipients improved so dramatically after 3 or more years, that they pretty much went back to normal!!
Can anyone be sure they are taking the right option?
what do you mean gpi version never heard of it explained like that.i think if I had the chance I would be first in line for stem cell but as for the minute I settle for dbs and when other choices are on the table I could always get the dbs system taken out good luck with your opp keep me updated. gus
It took me 18 months to come to the decision to have DBS. I found the thought of having it done very scarey. I read a lot of information about it, read posts and chatted to others about the outcome of their DBS. After hearing very positive stories about DBS and considering how my quality of life could be improved, I decided to go ahead. I knew DBS would not be a cure. Three months have passed since my Stimulator was switched on and I am pleased I chose this road. I sleep better. Dyskenesias and dystonia have greatly reduced. I don't have hot sweats. The anxiety I used to have has practically disappeared. My balance has improved. Today I left the house without my stick, which I had not done for over 5 years. I still have off times and get weak at night. I have been told it takes roughly a year to get the balance right between tablets and the stimulation. I hope this is a help.
Hi Gus & Jane
You are two of the examples of positive feedback I mentioned. Sorry, I don't mean to disrespect your advice - far from it (yours' is the advice that I'm clinging to!!) - but it is such a big step and I do hear of some other, not so good experiences of DBS.
Anyway, I AM going for it - just had to persuade myself!!
it took me about 14 months to find the right balance so hang in there. you won't regret it gary it was a bit easier for me as I was totally asleep for operation had mine done at Bristol
Good luck for June 10th. I've had my DBS from the JR for nearly a year now, and am absolutely certain it was the right decision - evidence the fact that I am writing this in the morning before taking my first meds!
Thank you for your encouraging posts about DBS. I hope it continues to work well for you. Since DBS, I still find it very difficult to move in bed at night. Has PD affected your strength and has DBS helped improve it?
yeh i guess it has gave me more strength,more get up & go as i was getting a bit down almost real low thinking pd was beating me then i had a second chance at the fight ! Big guns dbs ,yeh its still a battle been ok for 14 months nice balance between settings & meds,for the last 3 months .While dbs battery getting low my walking has been rubbish resulting in many falls getting good at my comando rolls now ! thought to myself all would go back to norm when new battery was fitted on 26th this month but hey no, so going through the mind field of getting my meds right again ! i do this myself so getting abit of a pro now .as for moving in the night are you on any slow release meds at bedtime they slowly release over12hrs jane.
I take 1 tablet Sinemet cr at night. I was taken off Entacapone at night to help reduce the dyskenesia. I was hoping the DBS would give me more strength. I will have to see what the Neurologist says when I go to my check up in June. I hope you get some more benefit from your new battery soon.
are you on the 250mg cr,might need a good tune up again
Thanks for that very positive feedback.
Hi Trev & Gus
Got back last Friday after having DBS at John Radcliffe in Oxford. I must just say that the staff were all brilliant!
I felt great when temporarily "switched on" between the two stages - dyskenesias disappeared altogether, and i felt really good in myself.
But, since being home, I am not quite as good - walking is very hit & miss and I have had a couple of very "low" days. Won't be switched on until end of July so I guess I'll just have to hang on in there and hope it 's all works out ok.
yeah you will feel good because of swelling on brain due to surgery no one knows why this happens but this is good signs please let me know how you get on when your switched on ! did you have medtronics or vercise dbs fitted. just take it easy and enjoy the sun until the big turn on
I had medtronics stimulator fitted - but as I said before I had GPi DBS which is in a slightly different area of the brain to where most people have it (STD DBS).
Thanks, anyway, and will let you know the result when I finally get switched on.
Sorry, should have put STN DBS
no worries hope it works out for you ,never give up takes some time to get the balance right
I've been given an appointment at the National on Monday because things aren't going too good at the moment but I have a feeling they are going to bring up the DBS subject again!!!
I'll let you know.
All the best,