Hi hope I can jump right in with a question or advice I am new to this forum and found you while trying to look for help. Basically I am 60 and had Parkinson’s since I was 47 but last year on the 31st of July I had DBs and switched on September 3rd. Things have improved on the whole, except for my walking. I can walk but the distance is not worth putting my coat on it’s stiff and very uncomfortable. I’ve looked online and Medtronic the people who supply the DBs say after the initial set up you should see some one on a monthly basis for at least the first 3 to 6 months to iron out any problems. Well after the initial set up on the 3rd of September l have only had one appointment with a DBs nurse and she didn’t know how to work the sensor. I’ve rung them on numerous occasions about problems but I don’t get anywhere. I need to see some one who has knowledge in the DBs function but have no appointments in the near future. So I was just wondering if anyone out there who has had DBs can tell me how they got on, how often they saw someone etc . I don’t want to complain but the amount of money it’s cost to do the operation is now feeling a waste of they don’t do the follow up. Thanks
Hi Bev65, thank you for your post and welcome to the forum. We’re sorry to hear that you feel you’re not getting the support you need following DBS.
If you need us, we’re here for you. Our free, confidential helpline is available to anyone affected by Parkinson’s. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses: 0808 800 0303.
We also have some information about DBS on our website here, including experiences from others who have had the surgery: Deep brain stimulation | Parkinson's UK
We hope that you’re able to access the support you need.
The Parkinson’s UK Moderation Team 
It does sound as if you haven’t had as much support as you should. I haven’t had appointments monthly but have had several over the last 18 months (see below) and can always contact the DBS nurse if I feel I need to see someone.
I had DBS surgery on 20/9/24 and the switch on appointment on 22/10/24. I initially found that it was very helpful at eliminating tremor but didn’t improve my walking - in fact , if anything it made it worse. I had a follow up call from the DBS nurse asking how I was getting on a few weeks later on 20/12/24. As a result of my comments on my walking she arranged another appointment a day later to change some of the settings and again phoned to see how things were going a few weeks later (19/2/25). They then arranged a major retuning appointment for 19/3/25 but I still didn’t feel my walking was as food as it could be so at my next regular appointment (30/9/25) they did some more retuning which did improve things. I’ve just had my latest routine appointment and feel that things are more stable now.
I agree, it doesn’t sound as if you have had as much support as you should expect. I had initial switch on in August 2024 with my DBS nurse, then had a few appointments over the next few months. I was also given a hotline number to contact a DBS nurse at any time in case I had issues with the system. Luckily everything worked quite well with the initial settings so only needed minor tweaks. If the system isn’t working well for you I’m surprised they haven’t offered to see you again. Could it also be worth trying to see your neurologist to see if any medication changes made when the DBS was switched on weren’t too large?
In January 2025 I agreed to be one of the first in the country to be moved onto adaptive DBS. As this is new I had a lot of appointments in a short period and since then have been seen at least once every 6 months.
I think a lot depends on where you had the surgery. I help to run a DBS support group for people with DBS or going through assessment within Parkinson’s UK. (If anyone wants the link to the Google form you need to complete to join please let me know - we have a Medtronic rep coming to the next meeting). All the different centres that offer DBS seem to have their own approach to surgery and aftercare which seems a bit odd. I had my surgery in Bristol and have been very happy with the aftercare provided so far.