A Tarlov Cyst interview , Ehlers Danlos.

Janny's interview


How did all start?

All started in 2005, with tailbone pain and radiating pain in left leg. A very small herniated disc was seen, what could not explain the symptoms and pain. But doctors didn't mention the Cysts. In the years following, bladderpain got severe, bladder and bowel disfunction, weakness in both legs and feet, though left was most severe side. 2018 I got bedbounded, headaches became worser also neckpain and arm/hand weakness. intracranial hypertension was seen on mri (left ventricel enlarged and CSF pushed in nose mucosa an behind left eye.

Do you already have a diagnosis? How long did it take you to get it?

Yes, I got diagnosed by a great doctor from a research team in Belgium.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Neurosurgeon is my primary doctor

What has been the most useful thing for you so far?

I got a electric wheelchair so I can go outside by myself in lying posiotion. And help with showering/dressing and househould, on such way that I can control my own life again, what I lost all the years of disbelieving by doctors. Despite it's progressive, I keep fighting to get this disease acknowledged in the Netherland as a volenteer at SOSNL, a patient foundation for patidnts with cerebrospinal pressure dysregulation syndrome and Tarlov cysts.

What have been your biggest difficulties?

The period of disbelieve from fysisians, who stated I had to be taken into a psych.instition for at least one year, they said it was the only way I could heal

How has your social and family environment reacted? Have your social or family relationships changed?

My nearest family are great, they always supported me. Though lost friends and a relationsbip because he couldn't handle my disease

What things have you stopped doing?

Working, hobbies. Instead I read a lot and what I can do from my bed, support felliw sufferers

What do you think about the future?

Thinking kittle steps ahaed, because of progression. So addapt to more help in future.

So far, which years have been the best years in your life? What have you done during them?

Till 39 years of age I could do everything. Worked as a interior builder/designer, when that was not possible I worked as a saleswomen in a furniture shop. Raised my kids into nice social boys. Went out with friends, loved working in garden.

What would you like to do if you didn’t have your condition?

Travel around the world, go to the US to my eldest son and family. Just do simple happyfull things with family.

If you had to describe your life in a sentence, what would it be?

Rollercoaster, ass getting more things, POTS, eagle syndrome .... wondering, when it stops

Finally, what advice would you give to a person in a similar situation?

Never let a doctor tell you 'it's between the ears', because it is not. Look for helogrouos/ foundations who support patients and read about this disease to understand what it is


Jul 24, 2021

By: Janny

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