Hey im 39. Diagnosed in August 2024 at 37… im currently on 125mg Stalevo every 3hrs along with the normal cocktail lol…
My main symptoms are muscle stiffness, weakness and fatigue… some slight confusion / concentration issues and a very slight tremor when “off”…
Iv been referred fkr for DBS and seen the surgeon yesterday… my question is. Who has had it? Was it worth it? Any regrets? Any thought’s.. ? Even of you haven’t had it is it something you would want? Or wouldn’t want??
Thank you for sharing your experience and questions. DBS is a topic that comes up quite often, and many people find it helpful to hear from others who have been through the assessment process or had the procedure themselves.
Everyone’s experience is different, and whether DBS is suitable depends on a range of factors, but it sounds like you’ve already had some detailed discussions with your healthcare team. We also have some information about DBS on our website which you may find useful.
Hopefully some members who have had DBS will be along soon to share their experiences.
Wishing you all the best as you consider your options, and we look forward to hearing how you get on
I work with a neurosurgery team and have seen many patients around your age go through DBS. The ones with stiffness-dominant symptoms often see the most dramatic improvement — it’s like a switch flips. Fatigue and concentration can also improve when you’re not fighting your own muscles all day. The surgery itself is not easy, but most say they’d do it again without hesitation. At 39, you’re actually in a good window: young enough to recover fast, symptomatic enough to benefit. Wishing you clarity on your decision.
Hi Azer, I had DBS fitted but mine was tremor related, it is worth having it done as Geoff has said, it is instant !! You will feel like a new person. I believe they do the operation differently these days with modern technology practices. I had mine done over ten years ago, it sounds scary but you won’t remember a thing. I have written on this subject quite a few times before so it might be worth your while looking them up !!
If you have any specific questions that aren’t answered by our web page, please do call our helpline on 0808 800 0303 and our specialists will be happy to offer you the advice you need.
We hope this helps. Please do let us know if there is anything we can do.
Thanks for sharing this information. Deep Brain Stimulation is an interesting treatment approach, and it’s encouraging to see how it may help improve symptoms and quality of life for some patients. Very informative discussion.
Hi, I had DBS surgery two years ago when I was 42 and it has improved life hugely for me.
It has reduced the amount of medication I need so dyskinesia has gone down a lot. I never had a tremor but suffered a lot with stiffness, slowness and dystonia which have all reduced considerably. In fact dystonia has disappeared altogether so far.
I agree that the best thing is to speak to others who have had it, as people’s experiences vary and the approach used seems to vary quite a lot between hospitals. I’m happy to have a chat, but there is also an online group for people who have had DBS or are going through assessment. You can find the details here on the Parkinson’s UK homepage.
I had PD nurse today and one of the conclusions was they are going to contact the specialist at QMC to assess me.
I have movement and shake issues but not yet freeze which they said is a good time to be considered.
we shall see… For PD I am now on 6 x 150 Stanek, 1 x Safinamide 2 x slow release a day and still having problems so if its available to me I should consider it.
Hi, @strumjough. Thanks for sharing this update with us.
It’s good to hear that you’ve had a helpful conversation with your Parkinson’s nurse. Being referred for an assessment is a positive step, especially if you’re still having difficulties despite your current medication.
Hopefully the specialist will be able to answer your questions and help you decide whether DBS is something that could work for you. Keep us posted on how you get on, if you’d like to. Wishing you all the best with the next steps
