Margotminnows's interview
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How did all start?
I went to various doctors for the pain and loss of hearing in my right ear, and each one diagnosed me with just an ear infection. Gave me the usual antibiotics, ear drops and occasional steroids. Until my dad actually talked to a family friend who happened to be an ENT specialist. He got me in to see him and he diagnosed me with cholesteotoma right away
Do you already have a diagnosis? How long did it take you to get it?
I did not. It took 4 different doctors and finally and ENT specialist to diagnose. A totally of about 2 and a half years.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've had 5 surgeries in the last 2 years. Two mastoidectomies on my right ear. One tympanoplasty on my left and right ear. As well as an implant surgery to place a titanium implant in my right ear to restore some hearing.
What has been the most useful thing for you so far?
Having the titanium implant. My right ears hearing bones were almost completely eroded away from the ctoma.
What have been your biggest difficulties?
I've hit every bump in the road it seems. I've struggled with my ear drum constantly retracting. I've had balance issues due to surgeries. And confidence problems due to having to shave the sides of my head.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been a huge support. It's a big change to everyone.. needing to talk louder, making sure I take it easy, but also my friends being there to support me. Nobody really is understands, so I've found a support group on Facebook for people who are affected or have loved ones affected.
What things have you stopped doing?
Other than swimming.. I haven't stopped things, just changed the way I go about them
What do you think about the future?
I'm scared. To be honest. What if it comes back? What if it gets worse? And I hate that hearing aids are so expensive.
So far, which years have been the best years in your life? What have you done during them?
The years before I was diagnosed. I didnt have to worry about getting water in my ears. I was a swimmer - I loved to be in the water. And just knowing I'll probably never be able to do things on my bucketlist is disheartening.
What would you like to do if you didn’t have your condition?
Go diving. To see some beautiful under water life!
If you had to describe your life in a sentence, what would it be?
You can't control what happens to you, but you can control how you react to it.
Finally, what advice would you give to a person in a similar situation?
Dont give up. It's a rollercoaster of a journey. Enjoy the ups and ride out the downs.
