My journey to Deep Brain Stimulation

Posted Mon 6th Jan 2025 at 15:18
by Jason Cohen

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How I came to discover this ground breaking treatment for TS

I started showing signs of Tourette’s at 3 years old.

This was a time when the world didn’t speak about this condition and up until I was 23 years old, I believed I was one of the only individuals with the condition on earth.

Tourette's, for me, has been an extremely lonely condition through my child, teenage and adolescent years.

Coping with the condition was a challenge. From 13 years old, when I became officially diagnosed, I was flooded with Anti-Psychotic and Anti-Seizure medication which destroyed my life in different ways.

My first pivotal moment in life was when I turned 19 years of age.

This is when I discovered I could make jokes about myself faster than anyone else which boosted my confidence and I started to live, only a little bit mind you.

However, my confidence grew and I wanted to use this to do something about it.

I started researching cures for Tourette’s on google, to which I know now, there isn’t a cure … yet, however, I discovered a medical journal talking about Deep Brain Stimulation.

Post raising this with my GP which resulted in a referral, combined with perfect timing, I was accepted to be considered for this procedure.

The years leading up to this surgery consisted of:

1. CBT sessions
2. Psychological assessments
3. Many meetings with a movement disorder specialist and neurologists
4. Pre-Op Assessments

After all the above, and what felt like so much investment to a tedious and potentially none yielding situation, I was finally given the green light to have the procedure which reduced my condition by 90%.

Yes, this is fantastic, however, currently there is a catch 22 situation of Deep Brain Stimulation not being offered as a way to help manage the condition from the NHS due to a lack of evidence, combined with a lack of individuals with Tourette’s coming forward to express their pain, discomfort and isolation, as there is no communications of another way to promote this action!

This needs to change and I will dedicate my time to speak to anyone who will take a risk and come forward to explore a new path.

Click here to read more about Deep Brain Stimulation

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