- Cholesteatoma
- Interviews
glen's interview
How did all start?
School visit to doctor when 6years old. They thought I had your ear. Developed into something more sinister. I only know now from research by my dad that it was in fact Ctoma.
Do you already have a diagnosis? How long did it take you to get it?
Even now no doctor has ever referred to it in all my repeat ops and draining as Ctoma!!
For what medical specialties have you been treated? What has been the most useful specialty for your?
Various meds all of which have proved useless in the long term
What has been the most useful thing for you so far?
Nothing really. I still suffer 20 years after my first big operation to attempt to remove the disease.
What have been your biggest difficulties?
Poor hearing, pain and sense of isolation
How has your social and family environment reacted? Have your social or family relationships changed?
Being hard of hearing is a big handicap. Unable to ever go swimming any getting water in ear is an absolute no. Confidence and ability to lead normal life like others severely affected.
What things have you stopped doing?
Swimming, avoid noisy environments and others.
What do you think about the future?
I am trapped within the Ctoma nightmare for life.
So far, which years have been the best years in your life? What have you done during them?
My life is restricted and jobs and relationships have been affected. Poor hearing, hospital visits and the foul smells emitting from ear during Ctoma problem times all played their part.
What would you like to do if you didn’t have your condition?
All the things I can't do with it.
If you had to describe your life in a sentence, what would it be?
A continuing struggle wrestling with this dreadful condition.
Finally, what advice would you give to a person in a similar situation?
Have faith and pray that the medical authorities spend more time and money searching for a solution to what is now the rising numbers now being diagnosed with the life sentence of Ctoma.
