- Tarlov Cyst
- Interviews
Simone's interview
How did all start?
in 2006 I fell down some stairs breaking my foot and ankle. It was on a weekend when the ED department and Orthopaedic department staff at our hospital were on strike. My foot and ankle were not set correctly. Fast forward to when the cast came off it became apparent that it needed addressing so after a year of backwards and forwards to various doctors etc I finally had a surgery to straighten the foot - this surgery also involved a Gastrocnemius slide which is where the calf muscle is split. This surgery triggered a raft of neurological symptoms.
Do you already have a diagnosis? How long did it take you to get it?
It took 8 years for me to be diagnosed with CRPS and a further 7 years to be diagnosed with a TC that was also contributing towards the neurological symptoms I was experiencing.
For what medical specialties have you been treated? What has been the most useful specialty for your?
CRPS, TC. I have a combination of therapists (chiropractor, manipulative physiotherapist, Holistic and traditionally trained GP, neurologist) that have all contributed towards making these conditions liveable for me.
What has been the most useful thing for you so far?
Learning and understanding about CRPS and TC's via Facebook pages for sufferers, learning about pain via the NOIGroup.com rescources.
What have been your biggest difficulties?
Finding doctors that know about TC's/CRPS and take me seriously when I describe symptoms.
How has your social and family environment reacted? Have your social or family relationships changed?
Family and friends have all been supportive - I am lucky.
What things have you stopped doing?
I no longer wear high heels, I refuse to let either of these conditions prevent me from keeping up my sporting interests - I train a dressage horse and I ski, I take each day by day and adjust my physical training to suit how my body is feeling. I can't hike for anything longer than an hour to two hours max - muscles break down and stop working and my back starts to kill me.
What do you think about the future?
I understand that the TC will only worsen so I'm making the most of being able-bodied as much as possible now. I'm continuing to learn how to manage this for the future.
So far, which years have been the best years in your life? What have you done during them?
I have enjoyed much of my adult life so I can't single out a particular period.
What would you like to do if you didn’t have your condition?
I would probably train more horses in dressage as I would be physically able to do so, I would also go hiking and do some challenging physical exercise such as mountain climbing. These I can't do now as there is a limit and short window that my body can tolerate activity.
If you had to describe your life in a sentence, what would it be?
I have a great life but the physical pain aspects have to be closely managed - I don't complain about it as there are others far worse off than me.
Finally, what advice would you give to a person in a similar situation?
Research, seek out other sufferers, be open minded, try new modalities in therapy - diet, exercise and well being. Be prepared to quit substances/food items that cause inflammation as it makes such a positive difference to do this.
