I am being assessed for deep bran stimulation and I don't mind admitting that I find the prospect of having a hole drilled in my skull pretty terrifying. Would like some words of encouragement from others who have undergone the procedure. Was it not as bad as you expected? Was it worthwhile?
Hi Christo, I had deep brain stimulation in February of this year, for the second time at John Radcliffe in Oxford. When I had DBS the first time, I did not like having the frame taken off. I told the Anaesthetist when I had the operation in February and he made sure I had enough anaesthetic so I would not have any pain.
Since having DBS, I no longer freeze, dystonia has greatly reduced and I am less stiff. I can get off a chair in one go, when I am feeling good. I have cut down the dose of Sinemet I was on by half and I am sleeping better. I hope this is a help.
I went through DBS surgery 6 weeks ago today. In terms of holes being drilled I did not feel a thing, NOTHING. I've just updated a thread I started at the beginning of the whole DBS process in the spring here on the forum,
If you want to ask me any questions and I do mean ANY questions, on the entire DBS process from the recipients side of things feel free to send a personal message through here.
Thanks folks. Nine years since diagnosis and my symptoms have worsened considerably in the last couple of years. I get severe off periods during which I am virtually unable to walk. These come on with very little warning thus I have had to surrender my driving licence. I have just about run out of options as far as the medication is concerned and the apomorphine , which I have been on for the last four years, is now getting a bit hit and miss and I have trouble sleeping. In short, if I don't have the DBS my future doesn't bear thinking about. Anyway, thanks for your words of encouragement Jem, And Tractorman, I will keep your offer in mind.
I had dbs in December 16 and like you, i had been reluctant to have the op. I found the local anaesthetic quite painful, but can honestly say that the op itself was not a problem. They keep you semi sedated and it does not feel like you are fully alert and conscious. The time passed quickly and the staff were wonderful in their support. Wish you all the best and don't worry too much, I'm sure it will go ok!
How the DBS operation is carried out seems to depend on the hospital where the procedure is performed. My surgery was carried out at the National Hospital for Neurology and Neurosurgery, Queen Square, London in 2011 under general anaesthetic throughout, so obviously I didn't feel a thing.!
My personal experience of DBS since then has been overwhelmingly positive.
If you'd like to speak to someone who has been through DBS , may I suggest that you get in touch with the Peer Support Service via the Parkinson's UK helpline. Several of the volunteers, including myself, have had DBS and will be happy to share their personal experiences.
All the best!
Thanks poorna and parklife. I'm feeling a bit more positive now. My op (if I am offered it) will be at Queen's Medical Centre, Nottingham. I am undergoing seemingly endless tests at present and the whole process is frustratingly slow. I will consider the Peer Support Service parklife.
Wear your courage like a suit of armour. You will surely feel much calmer.
My husband is having his assessment in 2 weeks at Queens sq, how long after did anyone have the actual op and what was the recovery time
can i ask how long your initial recovery took - from the actual op itself ? I am booked in on 12th December
They normally get you out of bed the next day ,if ok then normally let you go home 3 to 4 days .Then you go back to get switched on about 5 to 6 wks ,to let swelling go down on brain, for some unknown reason you feel really good after operation ie swelling on the brain. Hope this helps
Thank you Gus really helpful. I’m going into Southmead in Bristol. I’ve had so many sleepless nights - more than normal .
Your in the best hands at southmead hospital, i had mine done at frenchay hospital now knock down who’s your nurse, i had Caroline but they are all amazing, and try not to worry think about all the positives and how it’s going to bring your life back .kendo just had his done not so long ago.Myself about 6yrs ago keep fighting all the best Gus, Keith is my real name.
Your message has made me feel much more positive this morning - I was having a very large wobble! My nurse is Lucy - she was really lovely at assessment. I’ve got two children 15 & 16 and i think i’m so worried what they are going through it’s making me more nervous. I am however going to focus on all the positive things! thanks again
No problem all the best
Wife had DBS fitted may 2018 RVI Newcastle, switched on day after then took her for a walk down to Costa,s for a coffee. Came home day after. It’s been a success.
Op done got to wait until January for the big switch on fingers crossed it has all been worth it
That’s great news ,let me know how you get on.merry Christmas
Hope all goes well with switch on. I am due to have DBS January, can I ask how long you were in hospital, where you awake, any useful hints would be greatly appreciated.
I was in 2 nights. I know there is quite a divide across the country on how things happen but Southmead was completely under general anaesthetic. I walked into the theatre spoke to anaesthetist and found myself back in recovery 5 hours later. I’m extremely tired and sore but I focused on the positive and why I wanted this in first place and that’s for a better life.
i am due for an initial consultation at Southmead in January to assess if I’m suitaable for DBS. All the best for your ‘switch on’! No doubt you have read up as much as any of us about the procedure and all the positive comments and experiences. You’re through the scariest part already and it will all be worthwhile soon I’m sure. All the best!