First dbs appt


#1
Hi all @ the fotum .On Monday the 10th i had my first meeting with Prof Tipu Azziz and his underlings about DBS and learnt a few things .They are going to experiment with my meds routine where by i take them 1 hour before food and more regulary through the day as i seem to go along time without meds from 6 pm til 8 am (im on Stalevo 250 3 daily 125 sinemette 1 daily) .They hope it will give me 2 more yrs b4 surgury but they are applying for funding now .Have anyone ever meet this Prof b4 or had any experiance with DBS?

#2
Hi where was your app with the prof,what did they say about DBSive been to KCH seen a nuero cons ,and they sort of said its a bit hit and miss if the op would help me so not sure to go ahead any more .lee

#3
Hi I have had DBS by Prof Aziz and his team at Oxford in April of this year and the results have been very good for me but don't forget everyone is different.any questions about my experience I will happy to ansewer.

#4
thx jb has it been worth it tho is the op as bad as it sounds do they sedate you at all thro the op??do you have a better life from it thx lee

#5
Yes it was worth it, my tremor was so bad I'd had enough it was driving me nuts. They wake you up part way through the op to monitor the tremor but you don't feel anything just someone calling your name and you hold your hand up so they can watch how the tremor is. No one could be more frightened than I was. Its not a cure or 100% better I take sinemet plus but less than half the amount I used too. For me I'm glad I had it done JB

#6
Hello Jellybean,

I am so pleased that you are having a good result from your DBS operation, my husband had a Palidotomy operation back in 1997 after having pd for 15 years with 11 of those struggling with dyskinsia and it was so nice to be able to get five hours sleep or so we thought as it soon went back to 2-3 hours. I must say it has made a great difference to his quality of life as he didn't suffer from dyskinsia ever again. He managed to do a lot of things he wanted to do until the last couple of years but, he has now had pd for 30 years. He still likes to play scrabble or any quiz and likes making cakes in the nursing home where sadly he has to live now but what a huge example he is to many people that he has achieved so much while coping the this really difficult condition. YOU are all amazing and so are your spouses and that's from someone who has had really chronic pain for the last almost 40 years.
One thing that my husband said when he first went to a respite unit was that it made him realise that there are so many people much worse off than him.
Good luck in your continued recovery.
best wishes
vivian

#7
Hi JB and thanks for your reply that really helps , both my hands shake and drives me nuts to and get diskisea at times which is terrible , i cant do alot now and live on my own and gets very depressing looking at a wall all day long as i dont go out alot now thanks again .lee

#8
hi vivian
your poor husband has had a tough time and you to dealing with it to sorry to be ignorant but what was that op he had not heard of that before
thx lee