Has anyone had two acoustic neuromas- one in each ear ? - and not had NF2

[Flora-Dora]

[bypass]

Whilst it is perfectly possible, I haven't come across a patient with that in the 16 years or so I've been involved with Acoustic Neuroma patients (as a fellow patient, not a Doctor). Ask your specialist and please let us all know the response.

[Flora-Dora in reply to bypass]

will do

[Pebrox]

I have an An in my right ear and meningioma in my left ear, both of similar size. However, it is the AN that is beginning to cause a few problems with balance and some visual disturbance. Am awaiting hosp. appointment on 9th October. There is intermittant pain behind the right ear but will have to wait and see.

[Flora-Dora in reply to Pebrox]

Good luck with your appointment. It sounds like you have just been diagnosed. That must have been a shock.

[Pebrox in reply to Flora-Dora]

Thank you. Originally diagnosed 18 months ago but will see what the docs have to say.

[keithzx12r]

So sorry to hear that, must cause feelings of dread. I'm 25 years post surgery. At 76 life is good but side effects of balance and hearing persist. Hopefully with more modern techniques you will fair better - good luck, Keith

[Pebrox]

Thank you so much. It's good to know that others have had the same experiences.

[Flora-Dora in reply to Pebrox]

Have you had one in each ear? How were you treated for them if you don't mind me asking?

[keithzx12r]

I had three neuromas on the left side. I think on the 8th, 9th and tenth nerves. All were removed at the same time in 1987 on my wedding anniversary. Things were difficult running my own motorcycle shop post op but I recovered slowly, went back to drag racing my bike and apart from some facial palsy which some people don't notice and total deafness on the left lifes good. At least when I go to bed and lay on my right side everything is nice and quiet for a nights sleep. Keith

[Flora-Dora in reply to keithzx12r]

Oh Keith , sorry to hear that you had three.! That must be a record. Glad you've made such a good recovery.

[sadie2009]

I had a right sided 4cm AN surgically removed in 1999. Having had various symptoms recently an MRI showed i have regrowth, 1.4cm, and also a bilateral AN, about 1.4cm. My consultant has said you cant have two ANs without having NF2. My genetic blood test came back negative but inconclusive. Has anyone any views/knowledge of this. Ive tried to google the question but with no luck. I have to agree with Keith, one upside is you cant hear your partner snoring. Denise

[Flora-Dora]

Hi Sadie,

There isn't much about NF2 on the internet, is there? It's strange that your consultant said it wasn't possible, and then that your blood test was negative. It's all a bit confusing. Are you going to have gamma knife treatment on the regrowth?