Toni's interview
Error
How did all start?
It started in the beginning of 2015. Suddenly I couldn't sit or lay on my back. I felt pain heaviness and burning in my sacrum for 8 months
Do you already have a diagnosis? How long did it take you to get it?
I had my diagnosis 5 years later in 2020. I just got lucky to meet a neurologists which after the examination suggested that I might have a Tarlov cyst because no other symptoms matched my condition. And this is extremely rare - neurologists to suggest that Tarlov cyst could be symptomatic!
For what medical specialties have you been treated? What has been the most useful specialty for your?
I had a Tarlov cyst surgery in October 2020 and this changed my life for better.
What has been the most useful thing for you so far?
Tarlov cyst surgery.
What have been your biggest difficulties?
No help from the state and no knowledge and recognition of this rare disease
How has your social and family environment reacted? Have your social or family relationships changed?
Thank God, my family is by my side. But I lost connections with most of outside world. I just laid down in bed.
What things have you stopped doing?
Almost everything.
What do you think about the future?
I hope that I'll live without pain and fully functioning as much as possible.
So far, which years have been the best years in your life? What have you done during them?
My childhood and my youth. I was relatively healthy and happy.
What would you like to do if you didn’t have your condition?
Traveling, dancing.
If you had to describe your life in a sentence, what would it be?
Sometimes bad things can happen but God is good.
Finally, what advice would you give to a person in a similar situation?
Have the knowledge to make your decisions and get your life back
