Deep Brain Stimulation


#1

Has anyone had DBS? I am being assessed later this month but would appreciate hearing from anyone who has already experienced the surgery and how well it has worked.

Thanks for any advice/support - good and bad.


#2

Hi Lesley5677,

I had DBS installed 20th July last year, you can read about my experience in the thread,

Feel free to ask any questions arising.

Regards,

TRACTORMAN.


#3

Hi @Lesley5677,

Hope all is well.

It’s great that you’ve already received a response from @Tractorman and I’m sure you’ll receive more responses from other members soon. However, in the meantime, you should definitely check out the ‘surgical treatments’ section on our website here - https://www.parkinsons.org.uk/information-and-support/surgical-treatments

You can also download more information on dbs here - https://s3-eu-west-1.amazonaws.com/puk-live-1-d8-ie/2017-03/surgery_for_parkinsons_0.pdf

Please do discuss this first with your Parkinson’s if you’re considering DBS as an option. You can always give our helpline a call and speak to one of our advisers. Feel free to call us on 0808 800 0303.

Hope this info helps! :slightly_smiling_face:

Best wishes,
Reah


#4

I had a DBS(St Jude system) fitted almost five years ago, it certainly works even if the operation does sound scary/daunting but go with a positive and strong attitude that it will be worth it. I had my battery changed back in March(as the battery was getting towards the end of it’s life)and have gone from what I call a sensible remote controller to an ipod which needs charging every couple of weeks which is a bit of a pain. Otherwise I have come out the other side and would recommend DBS to anyone if it will help with their condition.

Les


#5

Hi Les
I’m glade every thing is going well with your DBS can I ask how long was it that you was diagnosed with PD to you getting DBS as I was diagnosed February march time with PD and I would like to get DBS if I’m able can you tell me what you went through to get DBS thank you for your time

Lee


#6

It was two years from diagnosis but would have been sooner had we not spent a year in Turkey. I had tried different medications to help with my tremors but none worked. On our return to UK I requested to be referred back to my Consultant at Peterborough hospital as the one at Cambridge I was not impressed with and it was this Consultant who recommended I be put forward as a candidate for DBS. I had to take a memory test to see what my brain was like(being a former lorry driver I didn’t have one as it was in my feet !! lol), then I went to Addenbrookes, Cambridge and was seen by a Consultant who did the operation.

Les


#7

Hi Les thank you for that I know you recommend DBS but what was the operation like and is there any downsides to having DBS ? Sorry to ask you so many questions

Lee


#8

I had DBS last year and just before l was terrified. But it turned out! that I was out for the whole procedure. It is not 100% bit for most it works .It’s the best decision I ever made. I recommend it


#9

To be honest I didn’t know a thing about the operation although I had seen it done twice on television. I was under for seven hours but I believe they do it in a shorter time these days. Whilst mine was being done I was due to take medication so someone went back to the ward and fetched it, I took it and they carried on with the operation, I knew nothing about this until afterwards !! As far as i’m aware there are no downsides only positives to take away with DBS, as i’ve said before, if you are offered it, grab it with both hands. Yes it all seems daunting at the time but once out the other side quality of life is so much better. As for asking so many questions, ask all you like and if I can answer I will, it is only peace of mind and reassurance for you. Like others on this Forum I am here to help fellow Parkinsons sufferers in any way I am able, we are, after all, in this together.

Les