For the entire time I’ve been diagnosed the five neurologists that I’ve seen have tried to persuade me to think about having DBS surgery done. I’ve been hesitant with the hopes that all the different medications would ease my symptoms. After 4.5 years of being on c/l as well as a handful of medications that supposedly helped maintain and aid in the c/l, I had to stop following this course because I never really had a good symptom free day. The constant increase in c/l was causing me more symptoms than relief. The craziest thing about it is that I was being prescribed medication to treat symptoms that c/l was causing. I had enough and the doctor told me to try dopamine agonists. It has helped with my stiffness some but my tremors are quite severe. I’ve been staying very active and have increased my mobility but when I’m not the stiffness creeps in. So now I’m being increased again to 12mg the doctor doesn’t want to increase it anymore. The biggest side effect is anxiety, that keeps me up, so again another medication to counteract a medication was prescribed. So basically I have to take it for what it is or I do something that absolutely scares me. The referral is in and now I wait for the consultation. At this point I’m just throwing my hands up in disbelief that I have to think about brain surgery. The doctor said that I shouldn’t wait because at this point I’m very healthy and most likely a good candidate. I know that this is probably my best chance to get relief from my symptoms and my wife has been on board with it from day one. She just wants me to get out and enjoy the world again. So my new mind set is let’s get this done so I can get some kind of relief so I can get as much as myself back.
All the positive DBS stories I have read here and witnessed have helped me get through the first step. To actually say “Yes I want DBS”. I will continue updating this thread as I move forward with this process. Hoping for the best and symptom free🤞living for a bit. It’s been to long.
I’m right there with you brother. It’s been 5 1/2 years for me and I can feel myself progressively getting worse. I’m nervous about the surgery but I figure that it’s my best choice at this time so I am going to do it.
I’m coming up on six years as well and my left side started to hiccup occasionally. The neurologist spotted it. They scheduled my consultation for 12/11. Hopefully they will consider me as a good candidate because I’m running out of options and we all know the future isn’t going to be better. It has definitely been an interesting journey so far.
Hey there! I had DBS in April 2021, and woud do it again in a heartbeat. Right now I’m taking pretty much no meds - just the occasional Rytary if going into a social situation. It was to the point of taking 30 pills a day of sinemet, agonists, etc. None of it really worked, I might get 30% relief. I’d recommend the procedure to anyone who qualifies - sooner rather than later! I wish you all the best on your DBS journey!
Thank you for your input. Sounds like you had a similar experience with the medications. This is my last option for a better solution. I’m hoping that I qualify. After five years it would be nice to experience a day without symptoms.
I’m on the road to dbs. I actually have my last appointment tomorrow before the schedule the surgery date.
Best wishes for your surgery and recovery. I’m looking forward to seeing if I qualify.
what are your symptoms? What device will you be getting? did you go for a rechargeable battery?
The tremors are the thing that they are going to treat with the DBS. Yes, I decided to go for the rechargeable one just because it has a longer life and I have early onset so being so young I don’t wanna have that many surgeries.
Oh, OK. DBS seems to be pretty effective for tremors. I haven’t met too many people that have my flavor of PD (Dystonia, bradykinesia) that have had DBS. I’ll be meeting my neurosurgeon next week and getting my MRI.
I’ve gone through all the testing and had my date for DBS surgery. My surgery was scheduled for Tuesday only to receive a call from the hospital. The call absolutely devastated me. I’ve been on such an emotional roller coaster about this surgery. I received a call two days ago that the surgeon “ is no longer with us”. The news left me speechless. Not sure what is going on. Is she dead or did she get fired? I was just in the office the day before have pre op labs done. I was to be operated on in the hospitals new facility and she was the lead of the department. Hospital not ready to give answers yet. Anyway now I’m on hold and I have no date or knowledge of what when and where.
This is an absolute disaster and nightmare. I even shaved my head in anticipation. I guess it’s just par for my journey with PD. So for now I am in a holding pattern and I’m definitely emotionally crushed. Hopefully I will get answers soon. Going through all of this again with a new surgeon is not how I expected my DBS to go. This is absolutely awful and I’m so over the bs one needs to go through to just get some relief from this. Fuck You Parkinson’s can’t anything go easy.
Nothing like having a life changing moment ripped away from you.
Feeling absolutely defeated 
Back on track with a new surgical team. Now to get into the or schedule. Could be two months but at least we are moving forward again.