- Tarlov Cyst
- Interviews
RZ's interview
How did all start?
The origin of Tarlov Cysts isn't widely understood at this time. I also have Neurenteric Cysts and these are also classified as a rare disease with little understanding. There are hypotheses on the origin - congenital. For me, it simply "happened." One day I was in a little pain then, over time, this increased to the level of pain I am in now.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took 3 days to be diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I am yet to be treated. I apparently need a neurosurgeon but I have yet to find one that understands my disease
What has been the most useful thing for you so far?
I have tried natural therapies for about 15 years (massage, physio, chiropractic work and acupuncture). Acupuncture, with cupping has provided the most relief. This lasts 1-2 weeks and so requires frequent visits. I have recently, and reluctantly, started taking Tramadol as I am at a point where I can barely sleep due to the pain. I try to take no more than 1 tablet per day.
What have been your biggest difficulties?
For 15 years I have been misdiagnosed. I've been told I have sciatica and piriformis. This has been difficult as there never seemed to be a light at the end of the tunnel. After being misdiagnosed for so long I have nerve damage. My quality of life has been impacted and I am starting to get muscular atrophy. I was a highly fit and energetic person. Therefore, physically and mentally this has been a huge difficulty for me. My quality of life is diminishing. I have suffered my entire "early life," and I am soon to head into my "middle adult era."
How has your social and family environment reacted? Have your social or family relationships changed?
Highly supportive and a relief that I have finally been diagnosed. Some are pro-medical treatment. Others are against medical intervention.
What things have you stopped doing?
Exercise. Sleeping well. Laughing. Dreaming of a future with an active lifestyle.
What do you think about the future?
Heartbroken. I wish I didn't feel like this. I'm scared that my strength will continue to weaken and that my bodily functions are going to be further impacted. I hope for a future where these 2 diseases are understood and treatable.
So far, which years have been the best years in your life? What have you done during them?
My early 20s were the best years of my life. I travelled the world, played sport most day and had a wonderful social life.
What would you like to do if you didn’t have your condition?
Travel, exercise, and play sport again - hike, hike and more hike. Socialize. Laugh. Sleep!
If you had to describe your life in a sentence, what would it be?
I try hard to minimize any self-limiting thoughts, although at times I am overwhelmed with anger and frustration with my disease. I am a data and technology executive and I resent that the free moments of my life are spent working 60+ hours a week and that in my spare time I am limping around in pain.
Finally, what advice would you give to a person in a similar situation?
I don't have any medical advice but I would say that it is hard; the pain can be overwhelm physically and mentally. It may sound like a cliché, but be kind to yourself.
