Hello,
I am 57 and was diagnosed with PD 15 years ago. I will soon have DBS installed.
Can anyone out there, who has DBS, tell me what sort of state they were in when they were allowed home? How did you feel? Were there tasks that were unexpectedly difficult? Did you need much care?
Peter.
Thank you for your reply.
I will have the operation at Southmead Hospital in Bristol.
Peter.
I had mine done at frenchay the old hospital your in very safe hands with dr alan whone & prof gill, and their excellent team ,It takes a while to get right balance settings of dbs & meds .but its gave me my life back ,please let me know how it goes and if you need any advice you can private message me if you need to say hi to the team from keith honebon, all the best & hopefully a new lease of life !
Hi Martini,
I can't say I have had DBS, but I wish you the very best of luck I do know it a big step I only know of one .
gentleman whom has had the op other than Gus and from what I understand it is very worthwhile, let us know when you are having it done so you can be in our thought so we can send you some positive energy from all of us on this forum
Kindest regards BB
Hi Peter,
Have just come across your post, and although I may be a little late, I thought you may be interested in my story. I had the DBS operation on August 11th this year, which is 3 months ago. I was sent home after two nights in hospital with a paralysed left arm and hand. After a CT scan the consultant said he wasn't worried and it would probably rectify itself. With the help of a physio and time, it did rectify itself slowly. After quite a rough time after the op, I was eventually switched on. I don't know what I expected, a miracle perhaps! It made me feel worse than ever. The Parkinsons nurse is seeing me every 2 weeks, and is 'tweaking' the setting. I know everyone is different, but I think it's going to take a long time before I feel any benefit from it. I hope you had a better experience!
Good luck
Lilac
hi lilac
where did you have your operation done ,i was only in hospital 3 days .I do not understand the bit where you are seeing pd nurse every 2 weeks ,normally at first day of switching you ON you stay in hospital over night & they sort out settings & medication ,then you go home & if need be you can phone up parkinsons movement specialist dbs nurse & they will see you as a out patient for the day where they can adjust dbs & meds.It does take a while to get it right myself went back & fourth 8 times.And took 14months to get perfect ,i take it you have dbs control where you can adjust abit. hope it gets better
Hi Gus,
Sorry about the delay in answering you.
I'm up and down at the moment but to answer your question, I had the operation done at the RVI in Newcastle. I had to wait 4 weeks after the op while the swelling went down and the stitches dissolved, then I went back to the RVI to be switched on by The Parkinson's specialist Sister. After she switched me on I went for some lunch and a walkabout and went back to see her after an hour or so. She seemed happy enough, but I felt very strange and weak in the legs. I went home, which is an hour's drive from the hospital, without traffic, (2 hours in bad traffic).
I returned to the RVI after the most uncomfortable 2 weeks I had ever experienced, to see the Sister. She did some more tweaking of the DBS and sent me home to return 1 week later. Since then I have been to see her nearly every 2 weeks. She gave me a handset so I could increase the range myself, but so far, after 4 months of pain and discomfort of dystonia, or going the opposite way with dyskinesia, I feel no further forward. I know the DBS is working because my tremor comes back when it's turned off. In fact that's the only positive, my right hand tremor has gone! The physio I see, and everyone else who has knowledge of DBS say it can take up to a year to work. Let's hope they're right.
Regards
Jackie
hi jakie
mine took about 16 months to get right its a really weird feeling when you get the meds right & the settings of dbs ,the best time for me is when i went in to have my 1 year check ,where they switch you off 1 & also take you off meds .give it time it will work im sure .merry christmas
Hi Gus,
I'm glad your DBS is working well for you. I've just got to be more patient I know.
Have a good Christmas too.
In fact a Happy Christmas to all.
Lilac
Hi,
I had my DBS surgery at the end of August 2015 in London. As i live a distance away and it was not easy for me to keep flying back and forward, all the surgery was done in one go and i was switched on (at a very low setting) the next day. This was gradually increased over the next 10 days and the pills reduced. I was then allowed to leave hospital and spent the next week in a nearby hotel being seen daily as an outpatient before being allowed to fly home. I have had to turn the voltage up a bit every now and again but so far i am well pleased. No more wild thrashing about (the odd twitch is the worst it gets now) and no more freezing (sometimes i shuffle a wee bit) but compared to how i was the difference is amazing. It was a great early Christmas present.
So to those who are struggling a bit after their DBS - dont give up - it does work. I was fortunate to have an intensive couple of weeks with daily attention. Most dont get that and without it its got to take longer. All the best & have a Happy Christmas!
Hi Shaken but not Stirred,
Thanks for the info and the positive thoughts on DBS. I must say you have been lucky getting such intensive therapy afterwards. My meds have not changed yet, in fact they have given me extra in the way of the rescue drug, Madopar dispersible for my dystonic pain, which is a great help.
Merry Christmas to you.
Lilac
Hi Everybody.
Sorry haven't been in touch lately. Been feeling bad. Adjusted meds again which has, at last, helped.
Still waiting for an app to the surgeons for assessment. Maybe this has been a good thing as it has given me time to think about what I really want to do and I' m more sure that I would like to go ahead with DBS.
SPEAK SOON
Casie
hi casie
lets hope they see you soon & all the best . Also very happy for you shaken
Hi all
I'm still sitting here waiting for someone at the National to offer me an assessment app for DBS so I think I'll have a word with someone from the Help Desk on Monday.
Casie
Casie call them at the hospital sometimes you just have to push and push i am sure when I call Lincoln County next to my name it probably says pain in the butt but you know what I don't give a dam.
Best wishes to you and good luck BB xx
