Deep brain stimulation - I'm scared stiff


#1

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?


#2

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.

 


#3

Hi Christo,

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.

Regards,

Tractorman.


#4

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.


#5

Hi Christo

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!


#6

Hi Christo

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!


#7

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.