Been told I am an ideal candidate for DBS.
I still work but the side effects (dyskinesia )off the meds I am on are starting to interfere with me working. Also started getting the dystonia some mornings … I take125mg stalevo, amatadine & rasagaline first thing then 100mg stalevo 4 times a day also wear a 4mg neuro patch.
I have gone through the tests and various phone calls with the specialist / psychologist and surgeon , all so far seem happy for me to proceed.
My questions are
what are recovery times once the initial surgery has been done ?
How long realistically on average does it take to get the DBS fine tuned?
And how much can you reduce your meds by ?
Last of all , I think that from what I’ve been seeing on the web that I will go for the Boston Scientific one , is this a good choice ?
I’m sure our forum members will be along shortly to share more information on DBS as well as their personal experiences with the surgery, but in the meantime you may be interested in reading through our DBS section. It includes a comprehensive downloadable PDF that will answer many of the questions you might have. You can find the DBS section and PDF here: https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation.
Please also feel free to reach out to one of our advisors at 0808 800 0303 - they are there to support you!
No not had it yet ,I had a phone call with a psychologist first …then I had a cognitive test at the hospital with a another psychologist .
A month later a FaceTime with the consultant who would look after me during and after the Operation. All three were happy for me to proceed and said I was a good candidate for DBS . The next step is a meeting with the surgeon in May. Then I think if he’s happy he will give me a date. They have told me there is no pressure and I can back out at anytime if I want.
I am still working but struggling with the side effects of the meds. That’s why I want it. I am told it lets you cut back on them. I take 125 stalevo , ragataline , amatadine each morning. Then every 2 -3 hours another 100 stalevo. Also wear a 4mg neuropatch
Have you been offered it at the Walton centre?
You hear all kinds on the web about it. But I asked my PN and she said although it can take a bit of time getting the settings on it right NONE of the people who she looks after who have had it done , regret it !!!
Thank you for coming back to me. I have reached the maximum dosage as I take 1x 100/25 mg Madopar every 2.5 hours plus 200 mg Entacapone during the day and cr sinemet before bed and 1 x2g Rasageline. Adds up to about 800mg of levedopa a day.
I get lots of “off” time. I am under Walton but I have been very upset by the attitude of the Parkinson’s nurse and the mistakes made.
Have you tried the neuropatch. I too had lots of off periods till I tried them. They messed with my sleep at first as they wanted me to go up to 8mg (which made me very restless at night ) I found that 4mg was best for me so stuck with that …loses its effect for me around 6pm now though so maybe I need the 6mg …
If not Walton where would you get the DBS ?
Must admit my appointments could be as much as a year apart with the nurse or specialist at the Walton centre.
Was really disappointed with the way I was treated after I was given the dx …was sent away with my tablets and a leaflet and told to come back in 3 months… with no contact from them in between at the time I probably needed them the most.
Hi yes I have been referred to Walton for them to establish if I am suitable. My regular appointments have been with St. Helens Hospital, in the last year My doctor has been in touch every 6 weeks over the last year.
I will likely have to fight for it to be done at another trust but with Patient Choice I am going to try.
No not offered the patch but i did try the appo pump but had an allergic reaction.
I am sure that most patients have a good experience with Walton, they have won awards. I have been unlucky and would prefer not to have to attend there.
They just give you some cognitive tests , looking at pictures , remember names , asking about real-time situations etc…
If I go for it I am going for the Boston scientific version as I believe it has better sensitivity .
Sorry to hear you have had a bad experience at the Walton centre . I am under Dr Steiger , I was originally with another neurologist but he specialised in epilepsy . Dr Steiger specialised in PD so asked to move over to him.
Basically been adjusting my own meds over the years , taking more as and when I need it.
Had a wobble a year or so ago with off periods , so tried the neuropatch , so far it’s been working. They mess with your sleep if you are on the wrong Strength .but I wouldn’t be without them now. … have they offered them to you ? Maybe worth a try.
Hi I have had my long awaited telephone appointment with Dr Steiger. He agreed to organise the necessary tests to establish that I am a good candidate for DBS. I only hope that the wait is not a long one, as I am really struggling.
