DBS - what's your experience?


#1

I was diagnosed with PD in 2002 when I was 45 and, until a couple of years ago (apart from a short dose of medication-induced gambling addiction & hypersexuality),  have been fairly symptom-free due to finding the prescribed medication that most suited me.
Recently, though, I seem to have gone downhill fairly rapidly - the most worrying aspect is episodes of freezing of gait combined with anxiety attacks and vicious mood swings.  Although this occurs most frequently when I am tired in the evenings, it can happen any time when I am going through an "off" period.
I have recently been assessed at The John Radcliffe Hospital in Oxford for DBS and am currently waiting to hear whether I am a suitable candidate or not.
Has anyone else had this procedure carried out there?  If so, would you recommend it and did you find it beneficial or not?


#2

DBS - The Rollercoaster

I was DXD at 45 after 7 years struggling with meds.

I had my first DBS in August 2013 and had it redone in March 2014 as the probes were too close to Optic nerve.

It has been a nightmare and only now after changing Neurologists have I found any sustainable positive results . I am on more meds than when I started and I dislike the fact that my care is now dependent on an expensive specialist.

The stress, and anxiety of the whole experience I believe has made me worse so I am don't feel at all positive about the experience.  

I did see the best in the Southern Hemisphere (the go to guru) so had a very experienced team but I found little data giving info on effectiveness of DBS.  

I found the article below very informative. 

Article
A history of deep brain stimulation: Technological innovation and the role of clinical assessment tools
John Gardner


Social Studies of Science 43(5) 707–728 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0306312713483678 sss.sagepub.com
Department of Sociology and Communications, Brunel University London, London, UK


#3

i had dbs 43yr old now had dbs approx 2 yr 6months best thing about where i had my opp you are totally asleep bristol frenchay have invested a serious amount of money in robotic theatre it took a while to get settings right & meds but its brought back my life again ,no more tremors ,shaking and dyskinesia gone my walking & balance scuff my r foot but to be able to hold  a drink & eat is great you can decide where you have  your opp.had my assesments stayed in hospital & they told me there then i could have it.have you had your test yet best thing i ever done ! i know oxford hospital is good for research but would suggest frenchay phone them and have a chat.


#4

bristol frenchay get the probes within 0.3mm to where they aim for that robots for ya!


#5
I don't know if the DBS work has moved from Frenchay but the Neuro Bot used in my GDNF surgery was at the redeveloped Southmead site and that used to be at Frenchay. I've met a few pwp and the feedback I heard was that it's like the choice of drugs, getting it done at the right stage of your PD journey and adjusting the settings and drug balance is crucial. Get it just right and I understand the benefits are great and last a few years until your PD jumps ahead again. We just have to try what we can while it still has a chance. Best wishes K

#6

yeh you could be right about frenchay to southmead move as i havent been for a while as my settings & meds  are ok !  took me about 16months to get it perfect need to go back on 5yr check up! so would think it all be moved by then.kendo ,hows it going withh gdnf is alan whone carrying it out hes a nice bloke down to earth


#7
Dr Alan Whone was a key reason I volunteered, along with the whole of the Trial team I've met.

#8

yeh there all great becca was my first nurse then had caroline (my  favourite ) there all so easy to talk too ,& very caring ! you feel calm the whole of the time your in all of the staff ! great hows it going kendo