Hi,
I have been referred to Bristol hospital by my consultant for DBS. I was wondering if anyone could give me some idea of the procedure and recovery times etc.
Many thnks
Hi @stuo62
I had dbs surgery on Sept 20th and have an appointment to switch it on for Oct 22nd. I felt pretty washed out for about a week but now feel pretty well back to normal. I’m currently in the “honeymoon phase” and my symptoms are almost non existent but just beginning to return. Any more questions please ask.
Hi Stuo62, thanks for reaching out and welcome to the forum.
A few years ago we did a series called ‘DBS and Me’ which followed Jo during her DBS journey. It’s over on our YouTube page here.
We hope this might help give some insight into the journey. We also have lots of information over on our website which you might find useful, you can access it here.
Best wishes
Freya
Parkinson’s UK Moderation Team
Hi, I had DBS in Bristol in July. It took about a year from consultant first mentioning it to actually having the surgery. Recovery time was officially about 6-8 weeks but I felt pretty good well before that. Was in hospital for 1 night after surgery and there was surprisingly little pain from the surgery so hardly needed any pain medication afterwards.
Switch on was at the end of August and it made such a big difference to my symptoms.
Happy to answer any questions, so please let me know if you have any questions about the various stages e.g. assessments, planning scans, etc. or want to have a chat about it.
Hello PaulM … I am 70 years old & have Atypical Parkinson’s diagnosed in June 2023. I would be interested to hear about your experience. I have also watched a few DBS stories on youtube. Did you consider the new ultra sound method of treatment? May I ask what your symptoms were? Was it a bad tremor?
Best wishes
Steve2
Hi Steve2,
My symptoms were more rigidity and stiffness. Before surgery I was also experiencing a lot of dystonia and dyskinesia. I have never really had a tremor. I have also had problems with non motor symptoms - mainly anxiety and sleep.
I did look into focussed ultrasound a little but was put off by the fact that it is permanent and irreversible. My neurologist was also very clear that he thought DBS was the best option for me, particularly because of my age - I was diagnosed with YoPD at 32 in 2014.
One thing that surprised me was that I was given a choice between four DBS devices. I ultimately decided to go with the one which should be compatible with adaptive DBS technology if/when this is approved.
Happy to share more info - feel free to message with any questions.
Good morning Paul … Thank you for your reply & for sharing your experiences. I am obviously wondering whether there is anything out there that might help me.
I am 70 years old & have what is classed as Atypical Parkinson’s. I also have neuropathy & I have wear & tear damage to my spine in 3 areas. There is an area between my shoulder blades that feels as though someone has thrust a knife into it.
The pain doesn’t over bother me it is a sort of 6/10 on the pain scale. I have had it for about 4 years, I did take Ibuprofen for it but have been told to stop because of my age. The Amitriptyline I take for my neuropathy helps with it.
The symptoms that really trouble me are my not getting any / enough sleep, very bad nightmares & exhausting dreams. Another troubling symptom is my gait freezing. If I stand still for more than 2 minutes I freeze & struggle to move at all. Then there is my walking. After about 50 yards my legs feel so heavy I cannot walk & my lower back is very uncomfortable.
So I can’t stand still & I can’t sit down for long as this has the same effect. The only relief I get is sitting up in bed or on my settee with my legs stretched out.
My opinion is that it is my medication that are making things a lot worse for me. But how much worse? I am certain that my beta blockers cause my nightmares but I’m told this might be Parkinson’s. I can’t stop taking the beta blockers as my A-Fib symptoms return.
My GP won’t get involved in my Parkinson’s treatment & my Parkinson’s nurse won’t get involved in my other conditions.
I also get a bit anxious & sometimes annoyed that I could be living a more active life,
So much on my bucket list that can’t be achieved.
Best wishes
Steve2
Hi Steve,
Has your neurologist given you melatonin for sleep? I believe that it helps for a lot of people (although sadly it doesn’t seem to do anything for me). DBS also commonly improves sleep but unfortunately that is the one thing it hasn’t improved for me.
Personally I found that both DBS and Parkinson’s medications help with freezing and rigidity. I don’t know what Parkinson’s medication you take but it might be worth asking your neurologist or Parkinson’s nurse if it would be worth considering making some changes to get better control of your symptoms. It might also be worth trying for a referral to a neuropyshiotherapist and occupational health if you haven’t already done this as they may be able to help.
Thanks
Paul
Hello Paul … I have tried Melatonin for sleep & it does not help. I take quetiapine for sleep & my nightmares.
I am on Sinemet aka Co-careldopa. I find this has given me more stamina for my indoor bowls. I can now play every day rather than every other day. But this sometimes exhausts me.
I have completed a 6 x 1 hour neurological physiotherapy course. A number of the exercises brought on my gait freezing.
Yes, I have had a visit to the local occupational health unit & they were most helpful.
I am seeing my excellent Parkinson’s nurse on Wednesday
Best wishes
Steve2
Good luck