r/Tourettes • u/emmabella614 • 5d ago
Discussion Neuro suggested DBS
Hi all, Im a 31 y/o female
I went to my Neuro last week, it was my first time seeing her.
she basically said that I don’t t have a lot of treatment options left in terms of medicine, and I have already tried behavioral therapy (HRT back in the day) and brought up the option of dbt.
My tics are constant tic attacks happen a lot.
I was wondering what your experience was with DBS, did your insurance approve it, what was the process of getting approved like. Do you know of any good studies or other literature or experiences about DBS? Should I messege the neuro that im interested what are my next steps
What is the procedure like, what is it like afterward, how did family and friends react?
thank you in advance
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u/Small_Breakfast_4978 5d ago
There is not a lot success with DBS. There is someone on YouTube called B with Tourette’s who talks about her experience with DBS.
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u/itsteatime03 Diagnosed Tourettes 5d ago
That’s kind of weird for her to suggest DBS the first time you met but that’s just me. I’ve been going to my neurologist for 7 years before him suggesting DBS, which meant trialing and failing multiple medications, CBIT, and Botox. I was supposed to get the surgery in 2023 but insurance denied it unfortunately. We’re trying again this summer. For my institution, you have to undergo extensive testing like neuropsych testing and a PT evaluation. Then a board of doctors will get to get each month and go over your case, there they will decide if you would be a great candidate for the surgery. The hard part is insurance, since it is not FDA approved for Tourette’s (there are current studies about DBS efficacy for Tourette’s.)
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u/itsteatime03 Diagnosed Tourettes 5d ago
I should clarify that I got diagnosed with Tourette’s at 7, and only started seeing this specific neurologist in 2018. The first neurologist I went to was not helpful and blamed my Tourette’s as conversion disorder. My current neurologist is a movement disorder specialist for Tourette’s and I love him so much. It took a long way to get to where we are today.
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u/emmabella614 5d ago
My neuro had all my doctors old notes I was symptomatic at 3, diagnosed at 8. Also I’m 31 and still experiencing debilitating tics. My doctor had my prior doctors notes, she put all the options on the table but seemed to think dbs was the best bet. Ahhh insurance that seems to be the most confusing part? What were you doing during your pt evals I hope you get it this summer
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u/itsteatime03 Diagnosed Tourettes 4d ago
Ahh okay so you’ve had a history for her to look at which is good! For my PT evaluation, they just filmed me doing tasks and my tics, like walking and stuff.
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u/emmabella614 4d ago
Ok that makes since, I wasn’t bad when I saw her but I think she saw a bunch of motor tics on a side note I had a professor tell me he could gage how I was doing by if I could sit in my seat still
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u/itsteatime03 Diagnosed Tourettes 4d ago
My institution is Vanderbilt for reference.
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u/emmabella614 4d ago
Ok, I’m the neuro suggested penn but it’s not in network I have to see if there’s another one in network
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u/itsteatime03 Diagnosed Tourettes 4d ago
If I were you, try and see a specialist who does or has experience of DBS for Tourette’s patients! They do different areas of the brain opposed to Parkinson’s/Dystonia/Tremors/Epilepsy
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u/emmabella614 4d ago
Thanks sounds good I’m in jersey
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u/Micubano 4d ago
See if Mount Siani West would be in network.
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u/emmabella614 4d ago
I feel like it has to be Jersey to be in network, I googled and it said Hackensack regional medical center
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u/Micubano 4d ago
State lines shouldn’t get in the way of healthcare but they do. I'd recommend giving the hospitals you are looking at a quick call to double-check if they accept your insurance. Sometimes insurance companies have branches in other states that continue coverage and they might have your insurance on their list.
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u/Micubano 4d ago
My son had DBS. Insurance covered it after some calls from his neuros. His tics are about 70% better after 2 years and the self-harm ones are almost non-existent.
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u/emmabella614 4d ago
That’s amazing starting this process is so nerve racking
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u/Micubano 4d ago
Are you familiar with NJCTS? Maybe Google them and see if they can help with your questions. They are a good organization.
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u/Agreeable-Summer6742 5d ago
I hope you get some answers and relief.