Hi bettyblue
I too am in the early stages leading to DBS surgery. I am writing a blog as I go through each stage and thought you might like to read it and compare notes!
It's certainly a scary path we're both about to take but hopefully it will make life better for us and all the anxiety will be worth it.
Regards
mrtoad
Hi BB,
I had DBS surgery at Queen Square at the end of August. I has transformed my life. Yes I was scared of the thought of brain surgery but they are experts at it (i think they do a couple a week!) It will do no harm to go and chat with them - I wouldnt want to influence your decision - everyone has there own struggle with this choice. Mine was easy - I was out of options! The neurologist i saw was Dr Foltynie & Prof Hariz lead the surgical team.
Hi Mr Toad and Shaken not stirred, Thank you for your reply's to my post Mr Toad I am interested in your blog and I hope everything work out well for you, I will keep you updated with how it all goes for me.
Shaken not stirred, funny enough as I have been on a clinical trial based at queens square and the lead researcher is Dr Foltynie, I am due to go back mid April for my final review and I will be meeting him then I will be discussing with him the pro's and con's of having this done. I will update this post as and when I have any news.
Thank you to both of you for your support it really means a lot to me.
Kind Regards BB.
Hi all
I'm sorry if I was making inappropriate conversation when I posted last time. The chance of having DBS is a very serious issue - and it is a very worrying time so I wish you and everyone else who is going through this the very best for the future.
Casie
BB
All I can wish you is all the very best. Always found your posts helpful and inspiring so wishing you well with your latest stages and look forward to hear more anytime you are ready to post.
BBlue
I read good things about DBS .
But sounds like you've thought it through, look fwd to hearing how it goes.
good luck
Andy (ojalahey)
hi bb
this will be your first consultation to see if dbs will help ! its such a great feeling at the end of consultation when they say we think dbs will help your symptoms greats news ball is now rolling wishing you all the best ! on telly next week itv miracle will be showing dbs where i had mine fitted
Hi Gus, what day is that show being screened, what channel and what time? Sounds interesting.
Thanks - Sheila
Hi.
I was going to start a thread about this and spotted that Gus had mentioned it already
Sheila - 'What will be your Miracle' will be on Thursday 5th May, ITV1 from 9 - 10pm, featuring Mac Macgregor, a retired marine, who undergoes DBS.
Best wishes,
Joanne
Thanks Joanne for that, will now be able to tune in! 
Sheila
hi BB,
To date you have put up a strong fight against the b----. Now you need to bring in the big guns, its scary, yes, and you must be very worried, but I know when it comes to it you will be strong and face your fears, and will come out the other side a winner. I will be thinking of you every day until you return on here to tell us about your journey, wishing you a heartfelt Good Luck!
Thanks JuJu,
I really appreciate your message and good thoughts, I can tell you now my Journey is not to far away now my appointment with lead surgeon is on July 1st this is just my first consultation, I done what I do and put my foot down and insisted on Queens Sq in London rather than Nottingham at the end of the day it is my brain and I decide whom and where I will agree to preform surgery on me not the Lincolnshire health authority.
I am so busy helping others dealing with dx and all the other rubbish that comes with PD that I end up forgetting about me. It would be nice to chat if you fancy it so I will private message you my mobile number.
BB xx
BB
I know you will prepare yourself for the DBS Consultation and have many questions. What are the implications of DBS on future treatments or trials? I believe Gus knows Dr Alan Whone at Bristol Southmead Hospital and he may be able to help on this point as he runs the GDNF trial I'm on and I recall DBS is still an option down the line for me, but would have made me unsuitable for the trial I'm on had it been done already. That's not to say that any future expansion of GDNF won't include DBS pwp if it happens, or STEM cell studies for that matter.
DBS provides the potential for real improvements in your daily life right now. Research into alternatives is more of a gamble.
BTW my avatar is MY head with GDNF infusion port and operation line that goes across the back of my head for the 4 sub-dermal infusion lines into the Putamen. I keep my remaining hair a bit longer now but have considered asking for a full size Matrix port at the base of the neck. I couldn't go as far as a full Terminator look like you [hehe].
hi
can i ask the reason you did not choose nottingham for the surgery ? it will be offered to me at nottingham at a future date and all information is much appreciated
Hi I decided on London as I have bee on a clinical trial there for the last year so as I know that hospital and the Lead researcher from the trial is the neuro surgeon it is more a comfort thing for me. I have always thought since dx there is more than enough going wrong in side my brain so the thought of someone fiddling about in there does not really do a lot for me.
I changed my mind as one morning when I had an appointment with my PD nurse I had three Distonia attacks in 15 hours. I am very much in control of my condition so untimely I will decide who where and when i go to for treatment. Plus my sister lives in London so I can stay with her if necessary after the operation.
BB
well my friends what did you think of that. itv miracle emma willis .caroline williams my pd nurse i was her first patient she started learning on ! she was the kindness person i have ever known she was & still is my miracle, and all the doctors & nurses .The great thing about bristol is your totally asleep for the whole opperation.