- Tarlov Cyst
- Interviews
melody mcelman's interview
How did all start?
numbness, treated for piriformis pain, dizzy, felt like cabin pressure in head, tinnitis, could not sit, could not stand, pain in hamstring, calf, foot drop, unable to void siting
Do you already have a diagnosis? How long did it take you to get it?
yes - 14 years to get diagnosis - treated for piriformis, S1 joint, hip bursitis, arthritis and back spasms, tensor latae dysfunction, interstitial cystitis and prolapsed bladder
For what medical specialties have you been treated? What has been the most useful specialty for your?
IC - interstitial cystitis
IBS
Piriformis
S1 joint
arthritis
bursitis
back spasms
What has been the most useful thing for you so far?
pain management dr who recognized that this needed surgical intervention!
What have been your biggest difficulties?
trying to find a neurosurgeon that can do it in Canada and noone understands or acknowledges this to be a disease
How has your social and family environment reacted? Have your social or family relationships changed?
socially isolated because I don't want to go out, painful and awkward. Everyone treats you like normally and you hide to contain the paint as no one knows what it is and something like this makes them uncomfortable.
What things have you stopped doing?
going out, socializing, driving, long walks, power lifting, martial arts, running, cycling, landscaping and working at my full time job as an administrator - cannot sit
What do you think about the future?
I'm going to change the future of this unknown disease and make it known. Individuals have killed themselves not being listened to. We need intervention in Canada here more research and compassionate care!
So far, which years have been the best years in your life? What have you done during them?
very fit active, aerobics instructor, life coach, administrator, improving the lives of others in so many ways - very gratifying
What would you like to do if you didn’t have your condition?
resume my physical activities and fight for those that have this disease
If you had to describe your life in a sentence, what would it be?
stuck
Finally, what advice would you give to a person in a similar situation?
write and unit with the cysters to make this known to government, researchers, doctors, and the public - make this rare - care - make it about the future of those who don't even know they have had it - every disease was rare once, this doesn't have to stay this way