- Vestibular Schwannoma-Acoustic neuroma
- Interviews
Liz's interview
How did all start?
buzzing in left ear. falls,headaches.
Do you already have a diagnosis? How long did it take you to get it?
About 14 months maybe longer.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I don't understand the question, I had surgery to remove the acoustic nueroma - about 90% was removed. Been on watch and wait since. More recently had surgery to remove pituitary tumour treatment/monitoring on going.
What has been the most useful thing for you so far?
my two sticks (crutches) as well as no longer having falls when out walking, passers by no longer presume I am drunk at all hours (I stagger to the left when walking)
What have been your biggest difficulties?
Aside from obvious financial hardship, not having enough energy to do very much
How has your social and family environment reacted? Have your social or family relationships changed?
It took a long time for family/friends to accept the changes- I was almost hyperactive before in my abundance of energy. Now everything is a struggle. But even though I am unlikely to attend a function I would still like to be invited, to feel included.
What things have you stopped doing?
Working, driving, running, working out, dancing,socialising, having fun.
What do you think about the future?
meh I don't
So far, which years have been the best years in your life? What have you done during them?
All but the last 12. I raised 3 boys (for the most part alone-divorced)bought my own home (well had a mortgage on my own) I lived! had an independent life, it was good.
What would you like to do if you didn’t have your condition?
My bungalow would now have been paid for, I would probably be looking to buy a bolt hole abroad and had a normal fulfilling life
If you had to describe your life in a sentence, what would it be?
praying for a miracle
Finally, what advice would you give to a person in a similar situation?
Be kind to yourself, don't let others bully you into trying to be the person you were.You will be surprised at just how strong you are. Laugh often.
