Watch and Wait > For those in the 'watch and wait' status

My story

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jsteph:
I hope you're doing all right with your docs and neuroma.

I can relate to some of your trials. Most of my experience with medical folks who I've dealt with over the 3+years of my AN have been fine. However, when I was told I had a brain tumor by my ENT's assistant, the message was delivered with clinical coolness. I don't fault the assistant-some people are better with things like this than others and I think she may not have known how to behave with bad news.

Additionally, I also have a lot of neck stiffness and soreness. I don't sleep well because my neck and shoulder muscles just don't seem to ever fully relax. It's quite fatiguing but I'm kind of used to it.

I'm watching/waiting. My symptoms kind of hold steady-better sometimes, worse at others but generally about the same over my 3 years since diagnosis. Life is still good!

Best of luck to you!

FPS36:
Hi Queenie i've read your post and can say that i also have a AN in my right ear around 10mm. about 12 years ago i noticed i was often clumsy and stumbling i eventually went to ENT with bad headache the consultant gave me a nasal inhaler (laugh) later as my problem did not go away i had MRI and they found the AN which do not get treated by a nasal inhaler. I then saw a neurosurgeon but it was felt as the AN was only about 6mm surgery was not an option as it could make balance worse. I then had Gamma Knife Surgery (not a knife as such)
by this time AN had grown 10mm but although Gamma Knife does not eliminate it does stop it growing. i also had  mild tinnitus but my major problem is balance i find it necessary to adjust my life style so i do not stand up too quick, do not walk too far, do not get over tired and more important try not to get stressed. If out walking i feel loss balance thin i sit down and all is ok within seconds. I do feel sympathetic for you but believe me it is something that you can manage. i now have 2 yearly MRI and my AN is stable. so at 80 yrs im not too bothered

queenie:
Thank you for all your lovely responses and for sharing your stories.

I am having my follow-up MRI with gadolinium next Saturday. After that, I will hopefully get an appointment where they can tell me some more about how fast it's growing etc...

Also; I finally know a few more details about my neuroma! I went to see the GP who was actually able to show me the reports the neurologists did not bother sharing with me. So apparently, it was a really small neuroma/schwannoma with a 1 mm focus. It is situated in my right internal auditory meatus. I wonder how much it's grown, as that MRI was 1.5 years ago (I don't expect it to be much larger I guess?)
My issue is...why the hell do I have bilateral tinnitus then? Why do I not just hear it on one side? I'm worried that there's another one they didn't see. Every time I told the doctors it was bilateral, they didn't really react, they actually write "left-side" or "right-side" tinnitus, which is funny, because it was always bilateral.

I will write again once I know a bit more. Thank you for everyone's support and again, thank you so much for sharing your stories.

GaleWynne:
I have a very small AN, barely 2MM now, on the left side. I have tinnitus and it has always been on the opposite side of the AN, it's whooshing now.  I had to use rain and ocean sounds to sleep at night, since it would "blend" into those sounds.  I had to somewhat train myself to ignore it. It must be very difficult to have it in both ears.  There must be other people out there who have it in both ears and have tips on how to manage it.  I hope you can find one or two of them and get some ideas.

Patti:
Please, Queenie, let us know what the MRI shows!

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