Hello I’m just looking for advice on the whole dbs process please?
I’m 44 been diagnosed just over 4 yrs and have recently been referred to the rvi for dbs as struggling with meds,
Can anyone tell me how they found the whole assessment and dbs process please and any regrets ?
Thanks
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Hi Madwife5676,
DBS is a common topic of discussion here in the forum, so you will find various testimonies scattered throughout. We recommend having a search for the term on our website for information, research, and archived forum discussions. This is a good place to start: https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation. Added to this, we encourage you to reach out to our helpline team on 0808 800 0303, as they have their own resources, including local support that may interest you. They are friendly and knowledgeable and happy to help.
With our warmest wishes,
Jason
Forum Moderation
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Hello,
My name is Balvinder, age 57 and have had a very successful DBS operation at queens square which has absolutely transformed my life… Up until the operation I was nervous and bewildered by the lack of information available on line. Even on this excellent website it can take ages to shift through all other Parkinson’s ailments before getting through to the DBS posts.
I am thinking of starting a DBS group only for people who have had DBS and are thinking about getting it done. The partners can also join…
Please let me know if this is of interest to you.
Cheers
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Hi Madwife, thank you so much for being the first to join. There are over 2000 people with DBS Neuro-pacemakers in UK, I’m hoping to get at least another 8 DBS’s to join lol
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Hi Balvinder,
I also had my DBS at Queens.
Mine was in May and am still very much in the tweaking stage!
I would love to join your group as I do not know anyone who has been on this journey.
Many thanks Annie
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Hi madwife
I know this post is a bit late but i have dbs at the RVI in newcastle my surgeon was mr jenkins he was brilliant the whole experiance was brilliant i had the op on the tuesday morning and went home the next day, i cant praise them enough i woud do it again without a doubt.
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I had dbs 10yrs ago Bristol Frenchay hospital then moved southmead outstanding a sleep the whole operation now they can put stimulator in skull halfing time of operation no wires to be seen
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Hi Balvinder
I too had DBS treatment carried out at Queens Square in March 2016 and have also found the procedure to be life changing. Had a battery replacement last year and everything is still good. I would be interested if you started a DBS group as I am about to undergo a dental procedure and am somewhat concerned.
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That’s great to hear Sue1960
I’ve just had my psychological assessment then have my levodopa challenge next month before I find out if I’m suitable. It’s starting to feel a bit real now and the nerves are kicking in ! Did you have any problems after ?
How long was recovery ? I still work so just trying to gauge time I’ll need off etc
Any tips for going through the process would be great ? X
Hi madwife
Where are you having it done, i was so nervous but i stuck with it the whole experiance was very good and recovery was quick for me all i can say is it was worth it hope you can over come your nerves, i had no probs after the recovery time depends on you good luck
Sue
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Thanks for your reply sue1960 I’m having it at the rvi in Newcastle, I’ve had all my assessments now so just waiting for the news to hear if I’m suitable although following my levodopa challenge he said he thought I was.
Have you checked out the new rechargeable small device that sits in your skull bone ,so no need for wires from your chest around your neck. This is carried out at Bristol southmead hospital sleep for the whole operation as well. Think you can chose where you go for opp not 100% but i would look into it .
Hi
I would be interested in joining a DBS group. I had the OP at Queen Square last year (a fantastic group of specialists looking after me there), and I have no regrets. It has greatly improved my quality of life.
Cheers
Hi Balvinder.
I would be interested to join your DBS group. If it’s set up how do I join please?
Can I please ask who was your consultant at Queens Square?
My mother has PD she was under Queens Square but had to transfer to Queens Romford due to closer proximity.
Hi Annie, so sorry for delay in replying as tried to do so much as felt I was bionic but would love to hear your story and tell you mine. I set up a website with forum but it needs updating. Take care
so sorry for delay in replying as tried to do so much as felt I was bionic but would love to hear your story and tell you mine. I set up a website with forum but it needs updating. Take care
Hi, I would also be interested in joining a DBS group if one is set up. I’ve just completed my initial assessments for DBS and have decided to go ahead.
Thanks
Hi,
I’m Keith and am 73.I was diagnosed in 2005 and had DBS at the London hospital, mile end in 2006.It was very unusual to have DBS so soon after diagnosis but it was unsuccessful .No damage done, it just didn’t work.Bad tremor (right arm and leg) was eliminated while I was on the operating table(yes operation was done whilst awake then)but after stitching me up and testing a couple of weeks later they could not get any effect.I transferred to queens square and finally bucked up the courage to have a second DBS operation in April 2019 .Cant report unmitigated failure or success but on balance I’m glad I
had it done.I will elaborate if anyone is interested.
Best wishes to you all
Hello
I have had the first assessment, and waiting for the next part of the journey to having the DBS fitted. I understand this second Assessment is for two days and if I get through that, the stimulator will be fitted. this is at Southmead, Bristol.
I do not like the idea of having to go off my meds, can anyone tell me what it is like?
Linda
Hi Linda,
I’ve done this at Southmead recently. On the day before the test I was not allowed to use Rotigotine patches and I had to stop my other meds in the evening.
On the day of the assessment all the off medication testing was done first thing in the morning so I wasn’t actually off for that long. Then the DBS nurse gave me some medication and we waited for this to kick in before continuing with the rest of the assessment.
I was also worried about going off meds and I can’t say it was very nice, I was very stiff and rigid and had quite bad dystonia at times, but on the plus side it wasn’t actually that long before I got back to normal. I imagine it will be very variable from person to person though.
Feel free to message me if you want to know more.
Paul