It's nearly 2 years since my op, and I'm finally beginning to see the light. Yes it is a long, slow process! Recently I had my DBS software updated, which seems to be working better. I'm going on holiday for the first time since the op. My main problem now is my speech and balance, with a slight tremor in my left leg, which I didn't have before. My specialist nurse turned me off for a while, and boy, I didn't like that. My right hand tremor came back, my left hand started, my face started crumpling, my head started shaking, - nasty! It just showed me the DBS is working.
Good luck to you, and be patient. Where did you have your DBS op?
thanks for the reply.It's reassuring that I'm not the only one for it to be taking a long time for there to be improvement.
I've been diagnosed for 20 years and I had the op just before christmas at the Walton Centre in Liverpool.
I also have a lot of problems wth speech and balance, though bizarely, I have more problems with speech and balance on medication and my off times are worse for stiffness, rigidity and tremor.
have you tried little and often 62.5mg every 2 hrs. how did you find any more info on safsafinamide yet.was i right about it replaces entacphone. they seem to be pushing it down here Dorset
I had DBS surgery in October 2016 at the Walton centre in Liverpool. I have been disappointed with how slowly the electrodes have been adjusted to have any effect but I think this is partly because of the videos on Youtube and the like showing these miracle changes
The DBS is definitely having an effect as when they tun off the unit my tremors are much worse. My balance and mobility haven't improved since surgery but I'm hoping as time goes on this situation will improve. I do find the gaps between appointments frustrating although I appreciate they have a lot of patients and limited resources.
i must say that the best thing with southmead hospital only had to phone up and they would have me there within a couple of days for re tunning .all best mtoad your know when it's right it's like a big firework
I find if I need to re-tune bearing in mind my hospital whom preformed my DBS is 150 miles away they will do a telephone consultation with me but I can do a certain amount myself I was last reviewed on 6th July if I call and say I need to see them they make a point of fitting me in no matter how busy they are without dbs and queens sq I dread to think where I would be now.....
thats great bb , i think they ie dbs hospitals go out of there way for patients with dbs ass they know how stressfull this can be thank god for british nhs all the best bb your be coming up to your yearly assessment soon how time flys ,Had mine five yrs & 5 months now .do you know if they do 1yr-3yr & 5yr then thats it as it is to traumatizing on us and i can tell you my 5yr one was they had to finish mine the next day as i would not switch ON & came over clammy ,low bp and dystonia bad in my shoulders and calfs all fine next day apart from the pain in legs and back but fine now.
They have not told me about yearly assessment although if this is required that's fine. I know I am at stage 4 advanced pd as in June I had a post DBS op assessment at John Radcliffe hospital in oxford for a trial they are running so I know if switched off for a while it will be bad but that's how this crap goes.
Hi Mr Toad thanks for your reply. I too find the time between appointments a bit frustrating, though I find seeing different people more frustrating. I guess you just have to keep moving forward!
Hi BB and everybody, I have held off commenting until things have settled a bit. I had DBS surgery at Queens Square in September. The first thing to say is how well I was treated by Dr Zrinzo, Prof. Limousin, all the PD nurses and other staff involved. I honestly couldn't have asked for better wherever I went.
My advice to anyone considering this treatment is to go for it if you can, you will only get one go and you will obviously need it to have got this far. It is a bit of an ordeal, there are tests beforehand and operations are always scary, but put your trust in the experts.
My initial results were a great improvement, I no longer have the pain from Dystonia and the curling of my feet. My walking is much better and the episodes of freezing have virtually disappeared and I am on a low voltage with plenty of scope for improvement if necessary. It takes a while to recover from major surgery and I do get a little tired later in the day but still much better than pre-op.
Everyone's PD is different so outcomes will be different and we know this is not a cure, but this has worked for me so far and I will continue attending my appointments and improving, staying positive and upbeat as far as possible.
Thank you Queens Square.
Best wishes to you all, and look forward to meeting BB at one of our appointments
Hi - great to read the posting trail on DBS. My husband is seeing the specialist tomorrow with a view to starting down the route of potentially having DBS. Very encouraging to read the postings. It does feel very daunting at this stage but hopefully will be better than having to wear a pump 24 hours a day plus injections and a ruck of medication. We have been talking to someone recently who had the op two years ago and he had great results and no regrets
Having seen the specialist I had not appreciated that as my husband is already on apogo therapy that after DBS he may still require apogo. Has anyone else had experience of DBS having already been on apomorphine, ???
I have maggieone not the pump though I refused that I was using the epi pens.
Since my Dbs surgery I've been able to give the pens up I still keep an emergency supply however just in case but not actually had to use one since March 7th thankfully hope this helps my love.
