-
How has your life changed since undergoing Deep Brain Stimulation? Are you glad you had the surgery?
I recently wrote an article about my dad’s Parkinson’s journey. In it, I discussed some of the things that changed after he underwent DBS. He halved his medication doses. His off-period dyskinesia almost disappeared. And he put on about 20 pounds (which he needed to do).
If you’ve undergone DBS, I’d love to hear more about your experiences.
How has your life changed since undergoing Deep Brain Stimulation? Are you glad you had the surgery?
-
6 Replies
-
Had DBS 2014 dx 2009 I didn’t really know what I getting into my son guided me. (Husband dies 2012) this was the best thing ever I still needed a lot of c/l. (25/100. 3 every 3 hrs). Soon went to Duopa when available in states. I think I have talked/wrote to 200 + people encouraging to get DBS It’s not for everyone but I think it’s the best
ps had a reputable surgeon NO problems whatsoever
-
Just had DBS in November of 2022. For me it was Life changing, and I am so glad that I had the surgery. I was up to 2 – 25-100 c/l every 3 hours, and now I hardly feel like I need any at all. I have been gradually reducing the amount of c/l, with my Neurologist’s direction, and spreading out the times that I take them. I still have a long way to go, but I hope to reduce it to 3 or 4 times per day, plus at night. Went for a walk yesterday, and my wife noticed the difference in my pace right away. I was keeping up with her instead of lagging behind, and her having to wait for me. The tremor is almost completely gone! I still need some tuning to be done by my Neurologist, but so far I am extremely happy with my results! I highly recommend that anyone who is eligible for the surgery look in to it, and if you are a good candidate, that you would do it sooner rather than latter.
Jeff
-
Hi!
Yes, I’m very happy I had the surgery (August 2021) as I no longer have tremors in my upper body, and I think it has slowed the progression. The difference it has made in my life is astounding. There are a few things that frustrate me still, but nothing like those horrible tremors!
Sometimes I forget that I have Parkinson’s!
Before DBS, I didn’t participate very much in conversations, and any group settings – I had to forget about talking because my tremor would get so bad whenever I spoke! This made me super self-conscious. Now I’m making up for lost time, and enjoying social situations way more.
I think it is really important to have realistic expectations for the surgery though. I have a couple of friends that were very disappointed afterwards, and have not experienced much relief from their symptoms.
-
I don’t have enough good words to describe what my life has been like after the DBS. Having gone through a crisis of uncontrolled movements and dyskinesia that forced me to ask for help to my wife even with the food, I found these doctors in Colombia who, after a long exhaustive and critical analysis, with the assistance of professionals of the highest quality in the hospital, decided to propose the mentioned surgery. At first, I was quite nervous, particularly that messing with my brain wasn’t easy to accept. I had to go to a psychiatrist, who prepared me for facing without fear the issue. During the surgery I was only awakened for the calibration of the sensors introduced in my brain, but it really wasn’t scary at all. In a single session of 13 hours, they did everything to me, the placement of the two electrodes, the connection of the wiring and the fixing of the generator into my chest. Today I thank G’d, the physicians and my wife who make this miracle possible to me. Drinking a glass of water without spilling it and being in a meeting with friends and not moving uncontrollably, among other thinks that everyone gives for granted is worth everything. As today, I drink 1 ½ pills of Levodopa/Carbidopa daily and have my neurologist supervision every 4 to 6 months, where I am checked and recalibrated my pulse generator when required.
-
Your words are encouraging, friends. I had R GPi DBS almost 2 weeks ago, and the L side is scheduled later in Feb. I am still in the “honeymoon” period and have not started any programming yet. Other than a simply HIDEOUS reaction to the adhesive on the surgical drapes, I found the initial 6 hr procedure rather entertaining (except the part where they shove your head – a somewhat emotional moment…) I am anxious to complete the process and see how it works!
More later… -
Your words are encouraging, friends. I had R GPi DBS almost 2 weeks ago, and the L side is scheduled later in Feb. I am still in the “honeymoon” period and have not started any programming yet. Other than a simply HIDEOUS reaction to the adhesive on the surgical drapes, I found the initial 6 hr procedure rather entertaining (except the part where they shove your head – a somewhat emotional moment…) I am anxious to complete the process and see how it works!
More later…
Log in to reply.