Experience experience with DBS and after

Hi Everyone,

I have Parkinson’s about 5 years and now I’m looking forward for a DBS surgery.
Is there anybody who, or had DBS operation recently or/and experience aftermath the surgery how is life, improvements with symptoms?

Kindest regards, Peter

Welcome to the forum @Matrai1 , I am sure other members will soon respond with all of their experiences with DBS surgery and life post surgery.
Have you read this article that is on our Parkinsons UK website? https://www.parkinsons.org.uk/information-and-support/your-magazine/stories/deep-brain-stimulation-christians-story
Warmest wishes
Lorna - Moderator Team

Hi @Matrai1, I had a DBS fitted in 2013 and it was the best thing that could happen to me. Before the operation I would wobble like a jelly but after it was like I was a different man. The only downside at the time was that my consultant wouldn’t believe my wife that I also had a Dystonic Tremor as well otherwise they could have sorted that out at the time. But there is a vast difference with one in and I would advise anyone thinking about it not to hesitate. I was very gung ho about it despite it being a bit daunting at the time. Where will you have it done when you go for it ? I had mine fitted at Addenbrookes, Cambridge and it was a St Jude but now I am living in Devon I now come under Southmead at Bristol who are just getting to grips with the St Jude system. Some of the DBS units are rechargeable but not so the St Jude, the batteries usually last about 5 years depending on how much power they are using and have to be changed. I had mine changed in March 2017. Anything else you want to know just give me a shout. All the best.

Les

Hi, good that you are looking forward to the op. The post-op period in hospital for my partner was mostly tolerable though long – more than 20 days on the ward. We had some difficulty getting the medication administered on time despite being in a dedicated neuro ward, which was probably the main problem of the stay in a non-surgical sense. It was most frustrating and worrying to see this happen. Any pain was mostly minor enough to be managed with paracetamol or caused by medication not being given on time.

The operation has been a limited success, assisted by remarkable and persistent efforts by numerous wonderful staff afterwards. This is not a one-off event; chances are, you will attend clinic after clinic once you’ve had the op. You might think this a curse, but we’ve found it a blessing: got a problem? They are there for you.

My partner is no longer in severe pain when meds are off, and has a certain amount of movement when off which wasn’t present before. But the fact I am still using the term “off” should tell you the op has not been the full success which was hoped for. It is an improvement but even staff have admitted the outcome has fallen a little short. Instead of taking less medication as expected, more has been prescribed.

My partner regards the limited success as making it still worth doing, and I respect that. Any improvement is something of a miracle and there’s no doubt there have been considerable benefits. But for all the worry and a certain amount of fear at the idea of seeing the one you love go through such an invasive operation, I would like to have seen a bigger improvement at the end. We have witnessed far more dramatic results with some of the other patients who were at the same hospital so it seems this may have been just bad luck.

I sincerely wish you good luck and I hope you get what you want from DBS.

Wife had hers fitted at the RVI Newcastle 4 years ago, admitted 0730 hrs Tuesday morning switched on Wednesday morning 1/2 hour later went walked to Costa’s for a coffee no ill effects. Discharged Thursday morning. Took several visits to get right settings since then system adjusted by wife and consultant and nurse as required.

Wife volunteered for the Parkinson’s Telephone Peer Service at the same time as Parkinson’s wanted first hand experience for a Peer Service to happen. But as usual for Parkinson’s UK nothing came of it, found out this week that it was because the person leading the Peer Service project left the employment of Parkinson’s UK and was not replaced.

Surely in these isolated times a Telephone Peer ServIce would be ideal practically for young onset and newly diagnosed as they have the most to lose and fear. Knowing first hand what is to come.

The best advise that someone can get is from someone who has experienced the pit falls of Parkinson’s.

I forgot to mention how long I was in hospital for, having gone in on the Sunday I was operated on the Monday and as I was coming around properly in my bed so my Consultant was doing the settings. I was discharged on the Thursday, albeit looking like something from the Mummy !! My aftercare went well though there was a problem with some of the stitches but this was soon resolved.

Les