One AN and one meningioma without NF , are there such people here ? And is there such a combination without NF? I am 44 years old. Please respond! Thanks !

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I have an AN, a small trigeminal schwannoma, and a tiny thing that they assume is a meningioma.

I have tested negative for NF2 but can't know for sure until tumors are resected. 

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Thank you for your reply ! Has there been any treatment? And how long have the tumors been detected?

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I have an AN, a small trigeminal schwannoma, and a tiny thing that they assume is a meningioma.

I have tested negative for NF2 but can't know for sure until tumors are resected.

Thank you for your reply! Has there been any treatment? And how long ago were the tumors discovered?

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Hi Elena,
I’m 48 and was diagnosed with a vestibular schwannoma (VS) on my left side, measuring 18×11 mm, and an incidental 4 mm petroclival meningioma on the right side near the porus of the trigeminal nerve. I’m going to be tested for NF2 in June, although Dr. Stattery thinks I’m not NF2. Did you take the test for NF2? do you have any family history of hearing loss or NF2?

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Hello! No, I haven't taken any tests for these syndromes. And none of my relatives have hearing loss or a brain tumor diagnosis. My neurosurgeon, who removed my vestibular schwannoma five years ago, believes that I have a spontaneous combination of two tumors: a vestibular schwannoma and a meningioma. He says I don't have neurofibromatosis. I really want to believe him.

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One AN and one meningioma without NF , are there such people here ? And is there such a combination without NF? I am 44 years old. Please respond! Thanks !

Hi Elena,
I’m 48 and was diagnosed with a vestibular schwannoma (VS) on my left side, measuring 18×11 mm, and an incidental 4 mm petroclival meningioma on the right side near the porus of the trigeminal nerve. I’m going to be tested for NF2 in June, although Dr. Stattery thinks I’m not NF2. Did you take the test for NF2? do you have any family history of hearing loss or NF2?

Hi Elena, Viva,
I'm in a similar situation, had my AN originally removed 10 years ago (dealing with regrowth now), and this month they found an incidental 1 cm meningioma.  Scared of having NF2 and future tumors, waiting to get an appointment for testing.  How did things turn out in your cases?

thanks,
Rumen

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Jan 2017 - Retrosigmoid surgery for 3x2x3 cm tumor, Dr. Akagami, Vancouver General Hospital
Sep 2020 - 6mm regrowth detected
Mar 2024 - regrowth to 1.4 x 0.8 cm
Jun 2024 - GK at Toronto Western Hospital