Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved them and If so how?
Cheers
Thank you for posting that. I too am interested in everyone’s experience.
I have my initial assessment in April, so a way to go yet! Last Saturdays movers & shakers podcast is worth a listen.
All the best
Yes, although my DBS was performed by an ego maniac who has since been fired and he has moved out of the state, it is still the best thing I’ve done for PD. No tremors just balance, stiffness and shuffling when my meds run out. I am able to combat these issues with a very aggressive physical routine which includes, Rock steady Boxing, Pickleball, golf and weight training. I still have PD, I take meds 5 times a day don’t sleep much, am stiff most of the time, I’m still giving it a good fight!
That's still lot of meds. Was it the STN area that was stimulated or GPI?
I feel my PD got worse after surgery. I’ve had big problems with balance and speech and even though my tremor is under control- it always was just by taking meds., infact I’m on the same meds I was before DBS
My life is so much better after DBS. At first it was worse and I thought what the hell did I do? But after a few months I started to improve. I had the surgery 4 years ago. One day about 3 months ago I had a very busy week and forgot to recharge. I felt horrible! My symptoms got incredibly worse. Then I realized I had forgotten to recharge in 7 days. I recharged and was good as new. It gave me a snapshot of how I would be without the DBS. Just be sure your doctor has done tons of this surgery before you. And please know, I am still on meds, 4 times a day instead of 5. And still have some symptoms, but all are less severe and I ,live a normal life for the most part, Good luck!
Hello Jebbie12,
I was wondering if I could ask. When you say "
.... busy week and forgot to recharge. I felt horrible! My symptoms got incredibly worse"
I imagine it would be horrible but what symptoms did you have? Did the worsening of these symptoms put you in a wheelchair for example?
I hope you don't find my questions intrusive, I'm just trying to figure out where I stand.
Thank you in advance.
D.
The thought of something failing some years down the line, leaving me suddenly fully symptomatic does worry me. I just imagine what would happen if I was driving or swimming 🤔.
be careful of swimming, drown cases after DBS reported.
gingerj . You are right to be a little apprehensive. See. pubmed.ncbi.nlm.nih.gov/363...
Hi gingerj! I had mine done Dec.8, have now had two calibration sessions. And the answer is YES! it helped my tremor-dominant PD immensely. Depends on what your symptoms are, most likely. I agree that the movers & shakers podcast is helpful--helped me make the decision to go ahead with dbs... Best wishes to you!
As a caregiver to someone who has PD...YES. Bilateral GPI placement for non-tremor dominant PD. Reduced the dosage of Rytary. Dyskinesias were 8/10 before, now 2/10. Much better sleep quality. Reduced dystonia and that is still undergoing adjustments with the tune up sessions. Ironically, the person themselves, due to some cognitive issues, doesn't really appreciate the huge difference it has made....they were unaware of their presentation of symptoms like dyskinesias.
Placebo effect increases as more aggressive interventions are applied. DBS is good for tremor-dominant disease but does not help with freezing and is questionable with cognition. Cynical view: DBS is overdone in late stage disease as a last ditch effort. Gotta do something??? or not
I had my Bilateral GPI DBS for non-tremor dominant PD 6 months ago and found that I had immediate noticeable improvement for the first few months and then it seemed to start not helping as much for the next couple of months but I’m happy to report that I’m back feeling the initial response with greatly reduced symptoms. I still have to take my same dose of Rytary but rarely get the OFF periods now.
Just where I want to be.👍
Me too!
I'm 66 and was diagnosed 16 years ago. I take Rytary, which gave me good results until 6 months ago when the dyskinesia started in earnest and has gotten progressively worse. Also, I've had many more off times.
I'm almost through the gauntlet of tests, scans, and interviews. Hopefully, just one CT scan and MRI scan remain and those are scheduled for this week. My first MRI wasn't clear enough due to my movement, so for this one, they're putting me under. I'm curious about anyone's experience with this part of the procedure.
Thank you, everyone, for all of your info, opinions, and encouraging words!
Jerry
My primary motor symptoms are bradykinesia and freezing. I was diagnosed 21 years ago and I've sampled every treatment option. I decided to try DBS because it was the only treat ment option I had not tried. My expectations were low going into the procedure and unfortunately my expectations were met. I feel somewhat better, but I am unresolved about whether or not I would have the procedure done now knowing what I have experienced to date. I think DBS is much more effective for tremor control. For this the electrode(s) are placed in the STI part of the brain. Results can be dramatic. My symptoms theoretically were better addressed by putting the electrodes in the GPi. It's been about 3 months since turning on my DBS. I think I do feel a little better, but the results are subtle.
DBS and it's benefits 
DBS truly reversible?
DBS and Falls
DBS and Sinemet
Dbs surgery -- if you have had dbs surgery please tell me about your experience after the electrode implant. 
