UK DBS Study - Just finished 1st phase
Zoomclub
the group and esp' those who've been able to give some experiences for
others to read up on.
I've been implanted in the UK study - which has actually implanted 2
separate sites - Both the Brodman Area 25 (BA25) - also known as the
Subgenual Cingulate, as well as the Nuclues Acumbens.
I had my op' in June 2009 and the 1st site (don't know which as we are
blinded) was switched on soon after - pretty soon after this I began
to feel worse, and ended up pretty much never leaving my flat - except
when absolutely necessary - to see Dr's, get meds etc. I then
had several adjustments over the next few months to see if they
changed the parameters - voltage, amplitude and wave length - I think
- Please anyone feel free to correct me if you know better!
Unfortunately none of these adjustments made any positive difference -
infact they made me worse - to the point of seriously considereing
suicide as the only way out of the hell I was existing in - Can''t say
the "life I was living" - 'cos I simply have not had a life - just
sleeping, eating and praying that the day was going to come when this
treatment worked as well for me, as I've read about it doing for some
of the patients in ~Canada and the USA etc.
Anyways, about 10 Nov this year they switched the 1st site OFF and the
2nd site ON - with one slightly weired difference compared to when
they'd switched the 1st site on - before actually deciding the
settings they spend several hours "optimising and testing each of the
electrodes to make sure they'll all working as they should, and that
you don't get any immediated adverse effects.
When going through this procedure for the 1st site, I never really
felt any differences - or had any particular thoughts etc - & think
my responses to all the difference rating scales which I had to fill
in after each set of adjustments were pretty much all the same.
However in Nov part way through this process the Dr hit a combination
of settings which gave me an immediate - pretty much "panic attack"
response - it was def' caused by the ~DBS settings and was pretty
scarey - anxiety and fear etc - this mostly susbsided when he stopped
the stimulation. This at least made me think "Well the DBS can
obviously have a pretty immediate effect on the brain - now just need
to find the right settings for it to work positively."
It wasn't until 28 Nov - notably, after some of the worst weeks I can
remember for a long time - & I've suffered severe trd episodes since
age 20 - the 28th was a Saturday, and I can actually remember going to
bed the night before thinking "If I feel like this tomorrow I really
doubt I'm gonna be able to carry on living on my own - Am going to
have to go into hospital etc.
Then on Sat am after waking up early and not being able to get back to
sleep I got up and kinda felt a strange sort of feeling - it was truly
as if the "pain, fear, and anxiety" had at least lifted - if not
completely gone. It was pretty amazing - I could actually stand up and
do things - without having to really "psych" myself up - just to get
out of bed / the chair - I actually had some energy, much better
concentration,and could sit and watch a rugby match and know what was
going on and enjoy it - as opposed to just sitting, starting at it.
For the 1st time in years I actually starated thinking about the
future and what possible ways there might be for me to actually start
some kind of live again - All that was pretty scarey, but instead of
just wanting to run back to bed and hide from it all, I could actually
at least think about it.
Anyway, long story short this major improvement didn't completely
carry through till the next day - back to everything being a real
effort and more fear and anxiety - but, not as bad as pre Sat 28th.
This has now been pretty constant and I've just had one more small
adjustment - to see if that can help bring back the progress and get
things going again.
Hope this does give some hope to anyone who's had the op' but not the
desperately needed results yet - it does show that yes, it can work -
but also that they need time to work out the best settings for each
person.
I'll update this again when any further changes / adjustments are made
- Good Luck All & I hope we can get some more people posting here soon.