How many people on the forum have had the dbs operation and what do they think now
Are you having it?
Hi lilly,
I had DBS installed July 2017. For me it has been a transformation. If I hadn’t had it daily life now would be very difficult. Now I can drive any distance, likewise walk any distance, and I’m still able to work 5 full days a week. I was sitting on the redline in terms of dosage of levadopa and carbidopa before DBS. DBS has enabled me to cut the weight of pills I was taking by 80%.
Not everyone who has DBS has had the outcome we all wish for, some people report only marginal or no change at all.
Regards,
Tractorman.
May I ask, so you have a rechargeable battery and were you awake during DBS?
Hi MrsPD,
My battery is non rechargeable. Expected to last 3 to 5 years. I was under for a lot of the time but awake for the incisions into scalp, the drilling of the two holes, the installation of the electrodes and the test switch on. The Anesthetist had real fine control of my under/awake state.
Regards, Tractorman.
hi, can i ask how long did it take from your battery being switched on to feeling good, i been switched on 4-5
weeks and struggling to walk.
thanks
Hi im going dbs assessment in a couple of weeks . I was asses3 before in tbe local hospital came of my meds the nighr before as planned and the next day my tremors were on holiday but they did rear their ugly head later . Im just worried that thus will happen again and the neuro panel will not see the real tremor in real time and say no yo dbs …am i worrying over nothing x
Hi I’ve had dbs 8yrs now and without it I can honestly say I would not want to be here, I’m a total wreck if I turn off .Had mine done Bristol frenchay hospital now southmead hospital operation totally asleep from start to end, these are the best as seen on tv doing trails gdnf. It’s not a quick fix you got to get meds right with dbs settings took me a year to get to the right settings I’m still fiddle with mine. Dbs Medtronic has four contact on each wire re chargeable battery 15yr .Boston scientific seem to be the new boys on the block, 8 contacts each wire & 25yr rechargeable battery I think, if I got anything wrong about Boston scientific maybe someone good jump in.As I have Medtronic the best thing about Bristol is your totally asleep, that was the deal breaker. And the team are top of game
Hi,
I have recently successfully awcompleted DBS evaluation , I was diagnosed just over 10 years ago at 41.
My Consultant felt the time was right for me to be put forward for evaluation.
The evaluation off medication takes about 2hrs and as your get tired your Parkinson’s symptoms will rear their ugly head.
The DBS team that carry out the assessment are looking to difference in performance without and with medication .They spot things we don’t even notice.
Remember this is only part of the assessment, You would not even be ar this stage if you weren’t a strong candidate.
I took lots of videos to show how bad when I was off as my Parkies for a long time was always behaving whenever I had appointment. My Consultant found this really helpful.
I was a year from he day that DBS was first discussed with me. I am having my first operation on the 5th November.
Have you completed the pyshological assessment ?
I hope the above is helpful.Sending you very best wishes for your assessment.
Kind regards ,
Claire x
Claire
Wonder if you have had your DBS meeting as yet ? If you have perhaps you might help me understand something…
… You mention “difference in performance without and with medication” that the DBS team are looking for. Soon I am seeing a Nurse in the 1st stage of DBS referral. One of the things that you read is that the DBS team are looking to see that your cognition is not worsening and that you are not getting amnesia (ie: memory problems). My cognition isn’t much changed when I am medicated (ie:‘ON’)beyond forgetting someone’s name whilst in conversation ie: who was that actor in the original “39 steps” sort of thing.
But when I am ‘OFF’ I am not that great mentally in that (particularly if out of the house) I am so preoccupied with the fact that I am stiff/sluggish and shaking and as you will know everything is difficulty from opening my wallet (no jokes please) to drinking a cup of tea, you get quite clumsy. Thus I am so absorbed by the difficulty of physical movement that I am
distracted mentally and find it hard to concentrate on anything other than the task in hand.
This distraction isn’t a problem of cognition but it stops me thinking about anything else except the presenting issue … opening the door, finding a chair , not bumping into people whilst trying not to attract attention if it is a public situation.
So what I wonder from their testing of cognition and memory are they looking / doing this testing when you are medicated and “ON” or when you are not or both ?
regards Ojalahey