- Cholesteatoma
- Interviews
Ally's interview
How did all start?
I used to go swimming with my nanna every week on a Monday and one day when I was 13 I went under the water and it felt like my head was going to explode. From there, I had the most insane ear pain - way worse than your average ear infection. I was screaming the house down in pain every night and no doctor seemed to be able to help me for ages.
Do you already have a diagnosis? How long did it take you to get it?
I went back and forth between the GP and the hospital for about a year and kept being told it was an ear infection. Eventually, my mum demanded that the ENT doctor did a scan. While I was waiting in the hospital to be put to sleep for grommet surgery, the doctor came skipping over, told us it was a growth in my ear and then left me and mum with a million questions - was it cancer? am i going to live? It was a really stressful time and I can't imagine what my mum was thinking while the doctor just left us hanging until after my surgery.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have had 4 modified radical mastoidectomy to remove the cholesteatoma and a reconstruction to rebuild the bones in my ear that the cholesteatoma had destroyed. These have not yet been completely successful as the cholesteatoma keeps coming back but I do tend to get better after each surgery for a while.
What has been the most useful thing for you so far?
Unfortunately my original ENT surgeon made a poor decision in opening a cavity in my ear which meant I was prone to many ear infections but I then moved to Addenbrookes under the care of the amazing Mr Donnelly and have not had any of those problems since.
Finding a surgeon/doctor who really cares about you and your case is so important and helps with both your physical and mental health.
What have been your biggest difficulties?
Growing up with cholesteatoma has been hard. It was hard missing so much school and missing parties as a teenager.
Now as I've grown up it's hard to juggle the regular struggles of being a 22 year old (paying rent, getting a job etc) with the health struggles.
How has your social and family environment reacted? Have your social or family relationships changed?
My family are my main support system. My mum also has cholesteatoma and she is my rock. I have some amazing friends who are understanding of me needing sick days and hospital visits but overall I'm quite hidden about it.
What things have you stopped doing?
I haven't stopped doing anything I enjoy doing, maybe to a fault. I still sing despite being partially deaf, I dj and I go out with my friends.
I have struggled to hold down a job with hospital visits and needing days off because of ear infections.
What do you think about the future?
I am excited for the future. I'm waiting for another mastoidectomy and I have high hopes that it will remove the cholesteatoma fully as we waited for it to grow so surgery would be easier to remove it.
