A Vestibular Schwannoma-Acoustic neuroma interview , Asthma.

's interview


How did all start?

My twins were 3 months old and sleeping in the bassinet, I was exhausted and went for a nap. I got up when I heard one crying, my left ear went "ping" and I instantly lost a lot of hearing in it which never returned. I had no idea what had happened, a couple of years later I went to my dr who referred me to an ENT, who gave me a hearing test, confirmed I'd lost a lot of hearing and told me there was nothing he could do. I was 16 busy with my kids, and went home and lived with it. Roll on 16 years, I clicked on a link on Facebook to trial hearing aids, which sent me to an audiologist who was excellent, the results of that were sent to my dr, who referred me to the hospital, who did their own hearing test and sent me for an MRI.

Do you already have a diagnosis? How long did it take you to get it?

I was diagnosed in March 2018. I think the hearing aid trial and related hearing tests started around Nov 2017. So, diagnosis took around 5-6 months.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I'm not sure what this question means.

What has been the most useful thing for you so far?

Apart from hearing loss, I was virtually asymptomatic prior to surgery, so the only useful thing really has been knowing it was gone. Unfortunately it also appears to be growing back.

What have been your biggest difficulties?

Fatigue, dizziness, trigeminal nerve damage.

How has your social and family environment reacted? Have your social or family relationships changed?

Not too much really, I can still function in spite of everything.

What things have you stopped doing?

I avoid places that are dark and have loud music, especially if people are gonna want to talk to me there.

What do you think about the future?

If I have to have surgery again, that's gonna suck. If I have to live with my "new normal" as it is, I can deal with that.

So far, which years have been the best years in your life? What have you done during them?

My 30s were pretty fun in spite of having lots of small children in a short time and dealing with being half deaf.

What would you like to do if you didn’t have your condition?

I would look for a better job. I will look for something different once I know whether I need more surgery or not, but I need to be aware that I won't be able to function well in noisy environments.

If you had to describe your life in a sentence, what would it be?

Pretty good but a bit frustrating.

Finally, what advice would you give to a person in a similar situation?

You will be ok. It'll take a while, but you'll get there. Join one of the online support groups where you can access collective knowledge about what's common, because medical staff don't always know, or deny that some symptoms could be related to your condition.

Interview Vestibular Schwannoma-Acoustic neuroma

Sep 13, 2019

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