- Tarlov Cyst
- Interviews
Mitch's interview
How did all start?
Motor vehicle collision
Do you already have a diagnosis? How long did it take you to get it?
Yes. 10 years.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pain management specialist. Pudendal nerve block and S1/Coccyx Steroid injection of Kenalog
What has been the most useful thing for you so far?
Rest, avoid lifting, avoid walking, avoid sitting. Pregablin medicine and Baclofen.
What have been your biggest difficulties?
Depression, Bankruptcy, Loss of career, Family breakdown, feeling like a burden to family and friends, unable to perform simple tasks like getting groceries.
How has your social and family environment reacted? Have your social or family relationships changed?
Friends are non existent. The disconnect from society has been heavy. Unable to participate in snow boarding and sledding, riding dirtbikes or the travel...any travel as all devices for life are designed around sitting. I have had to modify every action and activity, including kneeling on a cushion at the counter to wash dishes as I am taller and the basics of access to objects on the floor is overwhelming.
What things have you stopped doing?
Sledding, snow boarding, dirtbiking, road trips, working, exercising, repairing vehicles/equipment, sports, anything requiring sitting or motion.
What do you think about the future?
It took a long time to come to terms with the changes. Depression and anger was very weighting. I think I will take up learning a musical instrument where I can stand to play, I think less of the medical community as each meeting I have takes place, in the couple dozens of different practitioners up to this time. I think personal life changes, big personal life changes are needed and will take place. I think I will be needing to study again, back to books, if I can concentrate on the literature long enough with the pain.
So far, which years have been the best years in your life? What have you done during them?
The best years of my life where before the cyst problem. I was active, out doors, having lots of sex, going to concerts and outdoor festivals for dancing and building friends/relationships. I built a strong career with Mining equipment specialty repair maintenance breaking down stigma and poverty barriers with earnings in the top 2% of the countries population.
What would you like to do if you didn’t have your condition?
Continue to explore the worlds nooks and crannies in the outdoors, canoeing into coves for remote photography and heli snowboarding/sledding, setting up a yacht somewhere warm...
If you had to describe your life in a sentence, what would it be?
Roller coaster ride of physical proportions of injury and emotions
Finally, what advice would you give to a person in a similar situation?
Take your own health into your hands. It is your life, you make of it what it is and you have to live with it, reflect often, tell people you love that you love them and thank everyone that helps you in as many ways as you can, give, and accept help when it is offered. Never stop learning and if things are not going ok, that's ok, read, listen to or make music and write.
