Dbs

About Parkinson's and health Treatments and therapies
1

Hi,

i'm hoping for some information about DBS from someone who has first hand experience of it.

My consultant has referred me to the national neurology center in london as thinks i am a suitable patient and that i need dbs.

it will involve a flight every time i have to go there.

if anyone can has had dbs there can you tell me the pratical things that might be useful to me. for example

how many visits you made before surgery?

how long did they last?

what was the timescale between initial referral and surgery?

do they do the surgery all at once or in stages?

whats it like on the ward?

how long were you in hospital?

how long until you can drive/work after surgery?

did it hurt??

did it work?

if you had to decide over again knowing what you know now would you still have dbs?

 

basically any tips/advice appreciated

 

thanks

sbns

 

 

2

Hi shaken but not stirred

Last year forum member 007 shared his experience of DBS stimulation. Do take a look at the topic and see if it offers you any help. 

Thanks,

Ezinda

3

i had dbs surgery at bristol frenchay hospital and as i know this is the only hospital where your totally put a sleep for the whole operation, they are very advanced at this hospital,doing new trials at moment gdnf its called.if you put into website about dbs at frenchay it takes you through whole process,are you from ireland as i know they have operated on alot of people from there.as for telling you what happens every hospital is different.but i can tell you now it was fantastic for me,took a lot of tweaking for a year but good now.lol

4

FORGOT TO SAY YOU DONT FEEL A THING ,YOUR BRAIN DOES NOT FEEL PAIN, AND IF YOU CAN,T PUT UP WITH YOUR  SYMPTOMS  ANY MORE THEN GO FOR IT.NO REGRETS

5

Hi Gus,

thanks for your replies. You say that it took a year of tweaking -how were you during that year? Were you better than before the surgery or worse?

6

It was fantastic all the way,stoped tremors and dyskinesea, carried on working and i think i was pushing myself to hard,so had to keep messing around with meds and fine tuneing dbs monitor.Gave up work christmas 2012 feel alot better now not so  stressed i was a plumbing & gas fitter .Could not hold a cup, eat soup,had to jam hand  under headboard to go to sleep.Now i can eat,drink & sleep with a little help from some zopiclone sleeping tabletsbig grinthe only scarrey bit was the next day after opp,when i went to the bathroom on my zimmer looked in mirror thought i was ET ! .You feel better straight after opp ,,they say this is because swelling of brain due to opp.I would say if your suffering and get the chance to have dbs take it.All depends how  bad you are.its not  a cure i still have walking, balance issues but everyones different have a good talk with your consultant & pd movement nurse.Hope this helped. I am 42 got pd when i was 34 yrs old. Have alot of problems with nerve pain,and back pain aswell .This is why i say everybody is different and im very senstive to my meds aswell. Might not take so much twikking with you but, dont be scarred if you dont feel better the first time you get switched on. There get it right for you, they dont spend £30,000 plus for nothing ! BE PREPAIRD TO GET SHOCKED YOU WONT STOP STAYING THANK YOU

7

forgot to ask are you from ireland.