Dbs


#1

Hi

my husband is having DBS in two weeks time, I was wondering if anyone has experience of this. 

Many thanks

Kx

 


#2

yes they do, but don't seem to have picked up on your post yet.is there anything in articular that you want to know or are concerned with?


#3

hi there kx .i have had dbs for 2yrs changed my life can go out eating now,tremors gone ! balance & walking not so good but working on it. 


#4

Hi thank you, nothing in particular, we know quite a lot  about it in terms of the operation itself. It was just more about how successful it was. This is a last resort for my husband, he is only 32 and in the five years he has been diagnosed he has never had any success with his meds, he either can't move or he is all over the place. We have high hopes for this. 

Thank you Gus, it's good to know it has helped you. I hope you get the walking sorted soon. A week tomorrow and my hubby will have had the opp. Fingers crossed. Thanks again both x


#5

where is your husband having the opp too! don't be disappointed if at first it doesn't meet all your expectations as it took nearly a year to get it perfect right settings right amount of meds,it will blow his mine when he first gets switched on its like someone giving you a fresh start again ! good luck


#6

hows your husband doing , great i hope..


#7

Hi,

I am going to Queen Square in London for my initial DBS consultation next month.

May I ask where your husband had his surgery?

Obviously i have loads of questions but the main ones to ask are:

how did it go?

how is he now?

would you or your husband have  a strong view on whether or not to have DBS (assuming i am offered it)?

 

Thanks


#8

hi there . its like a different world for the last 2 yrs  6 months no more tremors or shakes.had mine done at bristol frenchay hospital put to sleep for the whole opperation.do they do this at queens square.only 5% are accepted for this opp.


#9

I too was (must have been one of the last before closure) operated on at Frenchay  Unlike gus mine was not the transformation that I had hoped for, as after several times returning to be reprogrammed I eventually developed an infection which made it necessary to have the pack and wiring from behind my ear removed (this time in the new facility at Southmead).  The electrodes are still in place.  My question is would the physical presence of the electrodes have any effect, even though they are disconnected?  It remains to be seen if I have the pack replaced, or everything removed - for being told it was all reversible was one of the appealing aspects. 


#10

sorry to hear that hopefully better luck next time.they do reckon swelling from the operation does make you feel better,this is why they wait for a bit before turning you on. 


#11

I waited the full 8 weeks after it was implanted for any swelling to go down.  As soon as I was programmed I started to have problems.  Before DBS my main symptom was tremor in my left hand.  After DBS I had it in both hands, although less in the left, plus just about every other PD symptom, with no reduction in medication.  The infection made it necessary to be in hospital for 11 days, while they tried to grow a culture from the swab taken from the wound.  Still feel much worse than I did pre-DBS, which begs the question is it just the advance of PD taking place (which it is known that DBS will not stop), or something else?


#12

thats funny you say that as i had bad tremor in right hand & shaking in arm, they put both wires in left & right just in case the pd symptoms spread,when they turned me on they reckon i had small tremor in left side  as well,after a while my left side got worse than my right,my medication was reduced alot ,but after a while my meds increased alot again ,i must say tho not as much as i was on before opp.as to your question i do not know but it as taken nearly two yrs to find a happy medium.