- Cholesteatoma
- Interviews
Annie's interview
How did all start?
Repeated left ear infections throughout my life. Grommets inserted at age 12. Despite frequent visits to GPs as knew I couldn't hear well no further steps taken .
More frequent infections in 2021 and smelly discharge. Saw cholesteatoma on NHS site but not referred toENT for months.
Do you already have a diagnosis? How long did it take you to get it?
Years but once eventually referred had CT scan and told disease had spread eroding hearing bones and close to my brain.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Paid privately for surgery in February 2022 as disease extensive.
What has been the most useful thing for you so far?
To know that my years of thinking something was wrong ( as I couldn't hear and had frequent dizzy spells) was eventually given a diagnosis.
What have been your biggest difficulties?
Coming to terms with the knowledge that the disease would have been much less severe if treated earlier and that much longer would have resulted in an abcess or meningitis.
How has your social and family environment reacted? Have your social or family relationships changed?
More understanding from family. They used to laugh away my stumbles / dizziness as awkwardness or imagination.
What things have you stopped doing?
Bending without preparing first.
Energetic sport such as Zumba.
Long walks and cycling as lack of energy.
Being an active member of groups because I can't hear what people are saying.
What do you think about the future?
Dreading the disease returning of which there is a 30 per cent chance.
So far, which years have been the best years in your life? What have you done during them?
I have enjoyed my life as I thought my symptoms were not serious and just part of me.
What would you like to do if you didn’t have your condition?
Be more active. Join in conversations more as the deafness has left me without confidence
If you had to describe your life in a sentence, what would it be?
I have lost out on being a confident fully engaged individual as my deafness and vertigo episodes have stopped me from found so.
Finally, what advice would you give to a person in a similar situation?
Persist to.get a diagnosis and surgery as soon as possible. Ensure that you have followups regularly to check it hasn't come back.
