Best place for DBS?

Hi

Apologies for the late response! I believe that Cambridge and Bristol offer asleep DBS, which indicates that they have the latest operating theatre equipment - not sure about anywhere else, I’m afraid.

Cheers,

Ian

I would personally opt for south mead hospital Bristol totally asleep for the whole operation very clean cuts and staff become like family, no problem to small & after care great also there is hardly any waiting time for re adjust settings. Big fat yes for me no brainer

Hi

Also a big YES for Southmead Bristol from me.

Gus

Wondered if I could pick your brains a little about the DBS treatment you’ve got Bristol .

What I am specifically interested in is the assessment process when you stay in the hospital for a night or possibly two. I am aware that you have a logic type test And the psychological type interview or test which between them I think indicate whether you’re in decent shape mentally and emotionally. The Main one though I believe is the OFF/ON Test.
In this you come off all Your Parkinson’s drugs levodopa,dopamine agonists etcetera by 6pm on the day of your admission to the hospital. And you don’t take any at night and presumably go through the next day till 6 o’clock when they re-administer your drugs (a High dose I recall the doctor saying).
At this point we are hoping for an improvement on symptom control To indicate that you are responsive to them which is also taken to mean you would be responsive to deep brain stimulation.
Do you know how long they leave after they have re-administered your drugs… Do they expect it to improve within an hour or a day and a night… Or somewhere in between…?
About a year ago I ran out of levadopa briefly Meaning I missed my morning and mid morning doses. And I found that I continually shook all morning without relief. And additionally had very poor movement and was pretty stiff… And it dawned on me that my Feelings of acceptance of PD and vague idea that it’s not that bad was really about PD WITH LEVODOPA and the other drugs. In a way that should be obvious But now I Think I will find it quite hard Go through that period without medication… And I have things set up at home to allow me to get around, exercise bike, various computer type devices, no rugs et cetera things that can provide valuable distraction When you don’t feel that good. And on that occasion and year ago I got very wound up by that realisation and the feeling of not being in control of myself… So when I did reintroduce the delayed levodopa it Took longer than it would normally And basically I didn’t come down until I’d had a good nights sleep.
So Although the levodopadoes work for me and I I’m always aware of End of dose dips etcetera and the lift you get when it kicks in… in that case I had got myself Very wound up and it didn’t immediately sort that out.

Suffice to say I’m concerned that if an assessment day in Bristol if the same thing happens it might look like it doesn’t work … When day in day out year in year out it does.

Did You have any feelings like this or was it quite a smooth day for you?

Thx Andy aka Ojalahey