Many of my friends and family know this but, I’ve had brain surgery in May 2016 (several months ago) for Tourette’s called Deep Brain Stimulation (DBS). It’s pretty experimental and not approved by the FDA. I was able to fight with insurance and get the $200,000 + covered by my fathers insurance, Regeance. We only paid for $500 at the end.
Honestly I was scared. I did so much research and read academic journals to make a wise choice. I’ve talked to other people with Tourette’s that went through the procedure. I pondered about the idea for the longest time (at least a few years or more). DBS is only for people with severe cases of Tourette’s and who has tried every single medication out there. It’s a last resort thing. And I was the perfect candidate. I have always been resistant toward the idea of getting brain surgery but I got to the point of hopelessness and frustration. I wanted to drive, go to movie theaters, hold a job without having tics hold me back so I took a leap of faith. The reason why I was so hesitant was because my handle who has Parkinson’s (another movement disorder) went through DBS and actually eventually died. His body deteriorated even faster after the surgery. Apparently they took a piece of his brain out I believe. My family was also hesitant and resistant of the idea for a while until my dad and neurologist brought the idea up. I was afraid of complications as death.
According to the graphs given me by New York University medical center (the place where I had my surgery) most people who went through the procedure was a success! And there are only a couple who’s Tourette’s became worse after surgery or didn’t improve at all.
It’s December, almost Christmas and how am I you ask? No improvement yet. They say it takes six months to a year to see results because I need to constantly readjust the voltage with a remote thingy.
What did the surgery entail?
What happened was they placed a few electrodes in my brain including a pacemaker on my abdomen where I charge myself every two weeks. The battery pack is where you can put the remote thingy to adjust the settings. There are different alphabetical groups within the setting that I work with for my brain. Group A, group B, group C, etc. with each group, I increase the voltage by .1 every few days to see how it affects my tics. Sometimes I get side affects such as dizziness or anger and rage.
They had to shave my entire head to do the procedure and now there’s a straight scar on my abdomen that goes horizontally.
I also have what I call speed bumps on my head where wires come out of my skull underneath the skin and goes all the way down to my neck, down across my collar bone and chest to my stomach.
I flew to New York a few different times for MRIs, tests, blood work and finally the surgery itself! I stayed there for two weeks for my surgery. It took I think a couple months or so to be fully healed. I was in so much pain, it didn’t hurt my head as much as my abdomen because they sliced across my abdomen to place a battery pack inside. They also stapled my wound sites on my head, so the day where they took out my staples it hurt like hell.
That’s basically my surgery journey so far! If you have any questions feel free to contact me or message below!