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!
While walking around the mall, I had a tic. Two older couples stared at me and I politely bowed and quickly said, “I have Tourette’s”. The woman turned back at me in confusion, smiled and asked, “You want to arrest me?”. I responded, “No, no. I have Tourette’s Syndrome.” It took her a second to understand what I just said and then I added, “. . .but if you want me too I could”. She ended up laughing and said, “You’re funny. I love you”. I smiled.
(Thats me taking a nap on campus in the picture above lol. Someone caught me red-handed!)
If you want to know how to cope, you can skip the first paragraph and read the second one.
I never realized how many people don’t know that I have Tourette’s. Being at Bellevue College (former community college) for four years, I just assume people know! But that’s not good to assume. One time, I was hastily running around campus a lot to get errands done and to stop by my instructor’s office and to finish up homework all at once. I literally went all over campus. The thing I didn’t know happening was my science instructor, Mr. Fuller (an awesome, sweet, kind, geeky entomologist) was advocating for me all over the place because many students, instructors, and staff had no clue why I was screaming, shouting, stomping, and jumping. They probably thought I was some crazy, hyper student running around for no reason and shouting for no purpose. I was waiting for Mr. Fuller to be done with his class so I can talk to him and while I was waiting, I had intense tics as usual. I’d jump, clap my hands, shout out “hey!”, and stomp. Students were freaking out in his classroom, but because he didn’t want his students to embarrass themselves out of ignorance (and to educate them of course), he stopped lecturing and explained to the entire class about who I was and what I had. He also took the liberty to explain to other faculty, staff, and instructors who were super concerned when I was walking in and out of the faculty area. Some instructors wonder how I’m able to cope with my Tourette’s in class! Well, teachers all over the world, here’s my answer: I just do. lol
- When I take tests, or quizzes I do it in a separate room so I could not be so tense and not disrupt other students.
- The first time I came to class I would explain to all the students what Tourette’s is.The majority of the time, actually almost all the time, students would understand.
- I would also take short breaks when my tics get intense.
- I’ve had some student complaints here and there and there were ways around it. Some students instead, took the same class at a different time because they ultimately couldn’t cope with my Tourette’s. I have every right to get an education of course, but there are some students who really couldn’t deal with the noise and we’d have to work our way around it.
- Unfortunately, there hasn’t been a year at Bellevue College that I haven’t encountered discrimination from an instructor. It makes me appreciate those who love and accept me as a student.
- I am just a regular student doing my regular thing, but often, my tics can be so bad that doing school work or homework difficult so communicating with my instructor in an open and honest way is super important. Also, being patient with one another is important, too, to have a strong healthy student-teacher relationship.
Hello! My name is Megan Phox
Here is a blog to learn more about Tourette’s Syndrome (specifically my experience). Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals. This is a safe place where you can ask questions that you would be too nervous (although you shouldn’t be) to ask me in person. All frequently asked questions will be in “menu”above where it says “FAQ”. You can also e-mail me at Meganitup@hotmail.com or add me on facebook (search Megan Phox) to ask me questions. Thank you everyone!
The menu above also has links to “Tics & Fitness” (where I talk about my exercise and nutrition journey) and “Tics & Art” (where I discuss about my artistic endeavors along with a business I’m running where I sell hand-made stickers and sell stationary!). Soon to come is “Tics & Speaking” where I share about my career as a motivational speaker! I’m not one yet, but definitely on the road to becoming a speaker. Just wait 😉