Knowing what I know , I don’t regret doing it. When my stimulator dies , I would replace it. Besides making my head Tender in the areas they worked on , I didn’t experience any side effects. The DBS has reduced my seizure frequency and number amout.
Now when I had the VNS implant done in the early 2000’s , I did experience side effects . Plus it didn’t work in my case. My seizures never reduce . I still had the same amount as I did before the implant. When the stimulator died , I told my Dr. that I’m not replacing it.
I first took the DBS, Day by day and month by month. I was keeping track of my seizures the best I could, since I don’t know when I have seizures . My family and friends alert me. My seizure kept reducing every month. My Dr . ( Epileptologist ) Reports from how many seizure I have from my seizure calendar .
With activities not much has change. I still ride my Mt Bike in the summer and part of Fall. I even help my mother in-law mow her lawn with her riding lawnmower. She has about an acre of land.. it’s not a flat either. There are Hilly areas.on her property.
I cook / bake on the kitchen Stove , Toaster Oven and even grill .
Keep in mind what I have
experienced, doesn’t mean he’s going to experience the same .
Randy, Thanks for responding to my post, My son (age 36) had the DBS implant with stem cells graphed to the electrodes, they went into his hippocampus. We're home and he is slowly recovering. Yesterday was 5 days post op, and it was difficult emotionally for him (and all of us) but today was better. So you three years+ post surgery. Knowing what you know now, would you do the surgery again? do you think it helped? Are there any activities that you don't do now post surgery? If there any downsides to the surgery what would they be? Thanks for your thoughts and hope you're on the road to recovery.
I had my DBS done in August of 2022.. it took about 9 or 10 months for the surgical areas of my head to nearly get solidly healed.
Before that my the areas worked on were tender and felt like Jello , when pushing down on them. I had to be gentle when washing my head.
Throught the first year with the DBS implant , my seizure decreased from one seizure a day or 30 a month, to 5 -10 seizures a month.
From what my family have seen and witnessed, my personality and behavior never changed.
Sue looks like you've had your device for over 14 years, how many battery replacements have you experienced? My neuro said it will take time for the DBS to show improvement. Would you agree with that statement?
I had the DBS device implanted in 2011. Electrodes for the DBS were placed on both sides as both sides have high seizure activity. There was a few days after the DBS device first being placed but it slowly dissolved. Next time I had any trouble is when we turned it on for the settings but it went away again shortly thereafter. Now I just feel the DBS purr in my chest every so often which lets me know it's working just fine so it's my "security blanket". I have no problem going in for the device replacement as I have gotten to know the surgical team quite well and they take wonderful care of me every time. I would go through the surgery again if given the option as I was experiencing 4 to 5 seizures a day - the DBS is what slowed down the activity of my having so many seizures at that time.