Acoustic Neuroma Association of Canada

Barb H · Joined: 29 Jun 2008 Posts: 1

I was found to have a 1 cubic centimeter tumor, located half in and half out of the semicircular canal and right up against the brain stem. The MRI was done only because I was seeing a neurologist about pain in my toes(probably peripheral neuropathy-Type 2 diabetes) when I gave her a report done on my brother who had some undiagnosed neurological problems when he was about 50 years old. Unfortunately he died at 52 from prostate cancer so I have no more history.

My watch and wait program was 5 MRIs since 2000 and then at larger intervals of time since no change has been noticed. What would be a reasonable time frame to follow for the future? I am now 65 and find following conversations in a group somewhat difficult sometimes. I had a hearing test done 8 years ago and it was fine but now I may just have some loss due to age and need to know if it is related to the Acoustic Neuroma

I would appreciate hearing about any other watch and wait histories.

Sometimes I feel like I would just like to forget about this until a symptom appears because the MRIs are expensive for the health system if not really necessary.

Thanks

Barb H, Hamilton Ontario

Pierre P · Joined: 14 Jul 2008 Posts: 1

I was diagnosed with a 5mm a year and a half ago. I know for most of you, 5mm is a baby compared to what you have or had. But at 35 years old, that leaves me with lots of years of MRIs, hearing tests, and follow-up in Montreal (even though I live in Ottawa). I have been put on a six month plan. So every six months they schedule me for MRI and hearing test. Reason behind this, is the fact that I still have 100% voice recognition in my affected ear. Since the tumour is so small, they would like to remove it as soon as we see increase in growth and or hearing loss. I guess I'm not really answering your question. Eevryone probably needs to be treated differently since age, size and hearing loss is a different factor in all of us.
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Diagnosed with 5mm January07. Still no growth after a year and a half. Praise God!!

Kathleen_Mc · Joined: 28 Jul 2008 Posts: 12

Barb: when my regrowth was found I of cource had nothing to "save" so I had yearly MRI's to check on the growth.....I did that for about 6 years then opted to have it out before it caused me any harm.
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What's that you say?
First resection 1990, subsequest resection for regrowth after years of monitoring.
Several "plastic repairs to "fix" facial palsy
Total hearing loss on affected side, blance issues