- Tarlov Cyst
- Interviews
Janell's interview
How did all start?
The pain started as back pain similar to a kidney infection. I had the cyst on T10-11 imaged back in 2005. They never told me that it was even there. Then in April of 2017 something seriously pissed it off. It has gone down hill from there. We have discovered 3 other cysts in the year since. 1 is right below the large one, I have one in my tail bone as well as 1 between my shoulder blades. I have another MRI scheduled to see if there is one in my cervical spine too.
Do you already have a diagnosis? How long did it take you to get it?
I have seen 3 neurosurgeons and a neurologist so far. They all insist that these cysts "don't cause pain"... (I'm sorry, but with all due respect, I call bullshit!!) It took me until the 3rd neurosurgeon to finally tell me that these were indeed Tarlov Cysts. Not one of them would agree that they could even POSSIBLY cause pain.
What has been the most useful thing for you so far?
Unfortunately, it is the meds. I would REALLY rather not rely on meds just to function at all throughout the day, but that is my reality.
What have been your biggest difficulties?
Getting answers!!!
How has your social and family environment reacted? Have your social or family relationships changed?
My social life is now non-existent... I cannot walk far distances or go out & dance anymore. Then because of the meds, I cannot drink. My friends don't include me much anymore..
My family for the most part understands and is very accommodating.
What things have you stopped doing?
Just about everything.
So far, which years have been the best years in your life? What have you done during them?
Everything before I turned 40 and discovered the first cyst.
What would you like to do if you didn’t have your condition?
Go out dancing with my friends.
If you had to describe your life in a sentence, what would it be?
Very sedentary. Lots of bedrest.
Finally, what advice would you give to a person in a similar situation?
Try to keep a positive outlook. Do not give into the despair of this disease. Keep hoping for a cure.
