- Cholesteatoma
- Interviews
KirstenM's interview
How did all start?
when I was 5, I wasn't hearing well. They investigated and was diagnoses with Cholesteatoma. First op when I was 6, in 1987. Much more apps after. SSD after that. Went silent for 28 years. Ctoma was quit. When i was 36 I went for an hearing aid for my right ear. Guy said, Why not operate. Short story, got and TORP (total osciluar replacement Prostheses) worked for 3 weeks. Then last March had a new MRI and new CToma there. :'( on the ganglion Geniculi. And to the tegmen Tympali. So shit there. Next OP ASAP as possible.
Do you already have a diagnosis? How long did it take you to get it?
Yes since early years. Got the congenital version.
For what medical specialties have you been treated? What has been the most useful specialty for your?
TORP placement thus far. Have been lucky always operated trough the ear canal. This time it will be CWU. Mastoidectomy with boney obliteration.
What has been the most useful thing for you so far?
TORP so I could hear again. Even if it was just for 3 weeks. Good hope if they finally get al the Ctoma out, I will here for longer. It was a libertation the few weeks I could hear with that ear.
What have been your biggest difficulties?
The uncertinty. They can remove it but because of the placement on my nevves facilialis they can't remove it permanently. So it will return. Could be in 2 years, could be in 50.
How has your social and family environment reacted? Have your social or family relationships changed?
Can't hear that good. So I always miss thing. I talk loudly because I can't even hear myselve loud enough. I rectract most of the times.
What do you think about the future?
I have hope my next OP can get it all out for good, and the prostheses wil work, That's all I hope for.
Finally, what advice would you give to a person in a similar situation?
Keep hope. But keep talking about your fears and insecurities. They are real. But keep living. You are worth it.
