Deep brain stimulation - I'm scared stiff


I had my op in October 2017 in St George’s Tooting. I must admit I was bricking it! I was in for 3 nights the 1st was because I was being done early next day, the most painful bit was when had the frame fitted, the op itself was weird as you’re awake but painless I came round after being put out for the second part of the op where they fit the device wondering what I was put out for lol! The 2nd night was spent in icu & not pleasant as I was wired up to monitors & had to ask a nurse for help to pee into a container which was embarrassing & the nurse wasn’t very helpful to the extent I ended up lying in a wet bed most of the night. The third night was great as it was all over & I was going home the next day. I had great support from my daughter and family thankfully. A year on & I’m on half the tablets I used to be still, I do need the occasional tweak which can be done over the phone but life is much better. The pros outweigh the cons (well they did for me)


Can I ask dd you all have control of your meds or did you have to ask forvthem?


I did have control of my meds but had to tell them which ones I took and at which times. Hope that helps?


Yes the scary part is over now waiting for the exciting part. Very tired still but head stitches out back tomorrow for chest stitches to be removed. Good luck with assessment- it’s not nice coming off medication but they really look after you


I feel sick at the thought of it! Next week DBS for me! They are doing brain first, got to stay in hospital for a week then another op to put battery in. I cannot wait till it is done and I am back home. So scared though. Good luck with switch on.


Where are you having it done?


Kings, London


Hi MrsPD, I had DBS done in St George’s Tooting on October 3rd 2017. You wouldn’t be human if you weren’t scared. Yes the thought of someone operating on my brain was to say the least out of my comfort zone. I’m not sure why you have to stay in for so long to have the second part of the op done as mine was done on the same day but they did say if they didn’t have time they’d do it the following day but I guess different surgeons do things different ways. I hope you have family &/or friends for support? They make things so much easier. Since I had DBS life is so much better so try & be brave. Yes there are risks but compared to other procedures they are minimal. The only part I felt uncomfortable was having the frame fitted before the op other than that there wasn’t a problem. Wishing you a Happy New Year & a great post DBS future nufcash…


Well it seems like you are going to the best place possible! They have a fantastic reputation, and you don’t become a centre of excellence for nothing …

Still daunting and worrying I know but you will be looking back at all this in a couple of weeks and on your way to better times I’m sure. Good luck anyway. I’m having my initial meting with the team at Southmead in Bristol next week so a long way to go for me yet!



Thank you so much for your support. Happy New Year to you all.


Hi I am due for a first meeting at southmead in march , I was diagnosed in 2011 , I would go for anything that helps and is beneficial to me now rather than later in life I don’t know how old you are but I am in my early fifties and would like to be more mobile and without the tremor’s that come with pd even if the are greatly reduced anyway I wish you well and hope for the best outcome you can ever get Jay


Good luck with op x


Thank you very much. For anyone who is interested I had DBS and all went well, had it on Wednesday and came home yesterday, and feeling ok.


Fantastic when do you get switched on? X


Had my dbs at Bristol hospital I got switch on think 4 wks, but all hospitals are different, wish you all the best for the future, remember it does take time to get meds & dbs perfect


Haven’t got a date yet.


Hi all
Had dbs done in September 2018 at the rvi Newcastle had it done on the Tuesday and was home on Wednesday, the whole op was done in one go by Mr Alister Jenkins and his marvellous team, I have the Boston scientific equipment and a rechargeable battery which has a 25 year life so all i need do is charge it every week, on the down side it is taking sometime to get it right and at the moment it is still controlling my life but onward and upwards, but still glad I had it done good luck to anyone going for the surgery Newcastle have the best team and the best pd nurse in Una brechaney.


Hello Lilly; how are you getting on with DBS?