I might add a word here from NYC in that Parkinson's may also attack ,even cripple patient's such as my wife of 16 years duration since DX who have no tremors, dystonia or dyskinesia ,DBS has little hope for these patients.
In the states all the conditions must be met as Selfbuilder has so ably described usually the shaking is so bad that one cannot brush teeth nor hold a glass of water etc.& etc.
I myself have been privy to watching this operation performed on a pal on a CCTV screen ,incredible to say the least , the eventual rest of my friends muscles after DBS was worth it for her .
For those of us with "the other" type of PD that affects our loved ones we await better symptomatic treatments.
Hello I am sorry it has taken a while for me to come back to you and its now to late for me to tell you about the assessment, I have been struggling of late as now my sympoms have got worse with my distonia and the constant swaying driving me crackers.
I am glad you have got through the assessment, can I ask where are you based as if you want to whilst I am recovering in hospital you maybe could come and visit me then I can give you some in site into the actual operation. Assuming my bed does not get transferred to an emergency I will be in hospital for two weeks. My op is going to be done as two stages the first to implant the probes at the front then I will be hooked up to something for research purposes and two or three days later the rest of the op will be done.
Then I will be in London for roughly 2 months as I will be to and fro frequently so they can adjust my settings.
If we don't get to meet I wish for you the very best of luck and I will update this post so all can hear how I've got on.
that is different to how i stayed in hospital my operation took 9.5hrs had everything done in one go then i stayed in for 4 days then home think for 4-6 weeks to let swelling on brain go down as they can not switch on as for some reason you feel better swelling,then i went up for two days setting me up ! as you say back & fourth for a good yr or so as i wanted the best i could get out of it.i hope everything goes well & you start to feel some what better.keep me posted all the best.
Hi BB, sorry to hear things have got worse for you, I must say I also have some very bad days. At some time in the future I hope to be called up for the final assessment prior to the op. Sounds like you have a long journey to the hospital as do I so that is not easy to manage. Thank you Greater Anglia from who we get great service. I am glad I joined this forum and to hear from fellow sufferers like yourself and to know I am not alone. I wish you the 'Best of Luck' with your op and look forward to hearing all about it. Bye for now.
My DBS op has now been completed and to say I am happy with the results is an understatement, for me the results have been fantastic.
Op was preformed in two sets first the probes were fitted on the 7th of march then the battery on the 11th this was split because they simply did not have time to do it all in one op. I was switched on on the 13th and as soon as my right side was on my foot corrected within seconds.
I now have a new lust for life with my DBS unit being given the nick name my old man and you know what I LOVE MY OLD MAN.
And I am now home in Lincoln with Colin and my much loved fur baby my cat MrDude.
For me this op has been worth its weight in gold and I implore anyone whom is considering this to just look into it with eyes wide open it can be so beneficial for PD granted it does not always work for everyone and it is early days for me but I know it was the right choice for me. I have my life back and my marriage as well.
Thanks Sue,
It has definitely helped me so much even though it's early days the darkness at the end of the tunnel has opened up to be a lot brighter xx
Dear BB, have just read your post and I am crying with happiness for you. Wonderful news for those of us on the same path. I wish you continued progress and happiness. Branwell xx
can i ask what voltage your on bb ,when they switched it on what word would you say it was like ! for me it was like a bright light being turned on just like when they turn on flood lights football game BANG AND YOUR OFF RUNNING OR WALKING LOL NOT SHUFFLING . Had my dbs 5yr assesment and my walking is very bad now when switched off too the point i can only shuffle along with someone holding me ! thanks for dbs or else i would be in a wheel chair by now. glad you had good results
I had DBS surgery last October but as yet I have felt little if any benefit from it. My ability to walk is far worse now than it was pre op and I can only shuffle and require a wheelchair most of the time.
The hospital is turning up the voltsge very slowly and I wondered what sort of levels people were at?
My machine wasn't turned on until 2 months post op and then no voltage was put through it until 2 weeks after that and that was only after my husband intervened and pushed for them to do something..
I am so jealous of those of you who have had such good results so soon after surgery. I am delighted for you of course but just wish I could feel more positive about the experiwnce myself
hi mrtoad sorry to hear this what stimulator did you have fitted i had medtronics some people are having boston scientific they are meant to have more scope ive been told. My voltage was very high left 2.80v right 3.20v mine now is 270v left 0.80v right i do hope they sort it for you sure your get there in the end don't give up getting on to them.
I think you must have lost a decimal point somewhere, 270v would surely have your nose lighting up! ?Just love typing with parkies, ha ha.
I've been to the hospital today for a 6 month review,off and on meds. Doing it like this I can see there are some improvements off meds but not enough to have any effects on daily life. I've been upped today to 2mv on each side and have been assured that this slow rate of progress is normal. So I guess I will just have to be a patient patient.
