A Tarlov Cyst interview , Scoliosis, Tarlov Cyst.

chrisfrie's interview


How did all start?

Scoliosis at age 3, braces until 16. Braces caused thoracic lordosis which led to spine fashion from T3 - L2. I now have restricted lung disease due to rotoscoliosis and thoracic lordosis. I have tarlov cysts in thoracic and sacral area at S2. S2 cyst was extracted 8/18/20. I was diagnosed last year but unusual pain developed at least a year prior.

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

It took a year to diagnose. Scoliosis was diagnosed at age 7 but due to early childhood breathing issues X-rays saw the curve starting at age 2 or 3.

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

Scoliosis, pulmonology, behcet's disease, tarlov cysts

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

Researching and learning about my body, I meditate daily, qi gong daily (like tai chi), restorative yoga

What have been your biggest difficulties?

Letting go of seeing myself as an athlete. I use to push myself hard physically: rock climbing, bicycling, running, weight training. Now I am more contemplative in how I work with my body. I use meditation to quiet the mind and relate to myself and my body intuitively and compassionately.

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

It put more demands on my husband after surgery and even before. With covid 19 this year not much social going on. The biggest change to social life is fatigue and pain. Since I work 4 days a week (I am on disability until November right now) I pretty exhausted at the end of the day.

What things have you stopped doing?

Strenuous exercise, weights, bicycling, running, climbing, gardening and landscaping my yard like I was doing when I could lift heavy objects

What do you think about the future?

It will be wonderful as long as I remember to see the beauty in my life and what I do have instead of what I don't or how much I hurt or other negative thinking.

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

Hard to say, life has taught me so much. I have traveled and seen and experienced many wonder things. I look forward to continue to being adventurous even if it is a lot different. My life is really incredible because of my husband and our love, our home and four legged children. Our friends are the icing on the cake.

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

Rope climb, down hill ski and cross country ski again, Ride and jump horses again, backpack up to tree line with 50lb pack. Be able to sleep on the ground again and get up in the morning. I am afraid I would not be able to stand if I tried it now. LOL!!! I guess I will get a big blow up mattress and camp in the back yard under the stars. I'll have to remember to turn the sprinklers off first.

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

Grateful I am so blessed!

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

Be kind to yourself, stay curious. about your body and explore what is possible!!!!!


Oct 5, 2020

By: chrisfrie

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