Which studies are here?
278-005
& Jon (Zoomclub) in the same study? University hospital of Leuven?
Which devices are used in the Leuven study? As the Europeans may have
noticed, the study we are in sucks. They are '80-90%' sure they have
a contact in MY Broadman area, so they aren't even trying the other
contacts. I've asked a Canadian who follows my blog to ask her doctor
if he would run me through the paces of all the contacfts. My
handlers of course said that would put me out of the study. (Um, and
if he finds a sweet spot I would care?)
Anybody hear from any of the Medtronic guinea pigs?
Here's an interesting bit - I asked my #2 research doc about the 4
lead study. She hadn't heard of it but made the comment she wasn't
sure she'd want that approach because of the 'high end real estate
they're dealing with'. I said - you haven't been here - felt this way
for 12 years - or you wouldn't CARE - as long as there is a chance it
will lift the depression. 2 leads, 4 leads, wire me up, but get it
done.
I still haven't gotten the courage to finish out my 1 year check up on
my blog. I get angry and don't really want to write what I feel.
After all, it has worked for some. (Yes Rich there are 4 out of
Dallas that the researchers say got relief.... note I am 278-005...
005 yuppers. To be fair, I am in a better place than last year, but
now have the agitation/anxiety side effect.
Hang in there guys..... we are the pioneers....
Jan
Hi you all,
I don't have much time to answer your questions right now but they
seem important enough to go into the details later. I must say I was
flabbergasted by all the negative messages on this forum, because my
experience is completely different. I am patient number four of the
Leuven study and I'm extremely grateful to my medical team (a.o. Prof.
dr. Nuttin, neurosurgeon, and especially Prof. Dr. Gabriels,
psychiatrist) for the very scientific and humane way they have treated
me, also and especially when things went wrong. My psychiatrist, who
takes care of the fine-tuning, even gave me her cell phone number in
case of emergency. One day when I called her on a Sunday (I did this
only once, but I was in a real panic), she remained friendly and
compassionate and took her time to listen to me, comfort me and
discuss the possibilities. I have four leads (none in Brodman Area 25)
and she took her time to meticulously test out each and every
electrode on all leads one by one. That took over a year, but it was
worth it. And after that I was subjected to a six month double blind
study, which was again extremely difficult for me, but perfectly
acceptable from a scientific point of view. I just cannot comprehend
why anyone would perform this expensive, risky and terrifying surgery
on patients and then leave them to their own devices. Maybe I’m
exaggerating, but it kind of reminds me of a certain dr. Mengele… You
just cannot mess with people’s emotions like that! I don’t know what
the heck is going on in the US DBS research centers, but from what
I’ve read, this is completely immoral and inhumane.
Carry on, folks! More later.
Jan
Rich
interesting that the first implantation was done at Catholic
University of Leuven in Belgium. Here is a link to their TRD study
which didn't get going until Feb. 2009.
http://www.clinicaltrials.gov/ct2/show/NCT00837486?term=major+depression&cond=treatment+resistant+depression&rank=20
I also found another study being conducted at Emory University by Dr.
Mayberg that is quite a bit farther along than our St. Jude study. The
link for that is
http://www.clinicaltrials.gov/ct2/show/NCT00367003?term=major+depression&cond=treatment+resistant+depression&rank=8.
There are quite a lot of studies out there for TRD and since I'm not
currently working, maybe I'll become a full-time lab rat??
Regards...