Thanks for your kind words.

The SSHL is very bad, also because I cannot distract myself with music or audiobooks anymore,  but it is also that the other ear seems to be hurting all the time, especially when I block the bad one. I have to live with this idea that I may become completely deaf, and that I find terrifying.

As for the rest, the reactive tinnitus is probably the worst symptom… very hard to live with, I just hope it gets better.

I will try to believe there is light at the end of this tunnel although, to be hones, I don’t see it.

I'm grateful for any opinions anyone might have. I had gamma knife Aug 2022. My one year MRI in July 2023 showed a stable tumor at 1.6x1x1.1.  I developed mild headaches and facial twitches. I had an MRI April 2024. I met with doctors to discuss it today. The tumor is 1.7x1.3x.09 now. The MRI was done locally and the measurements differed. It also shows mild ventriculomegaly which could happen as we age or could result from increased csf pressure. Ventricles are larger. The tumor is resting on my brain now. I'm supposed to get another MRI in six months to measure the tumor and ventricles again. I was told the tumor could possibly decrease but they feel this is more than swelling and indicates growth. I will know more in six months. They said they can't be 100% sure because its been less than 2 years since GK. Has anyone experienced a  similar situation? I really don't want surgery. They told me it's
 common for the AN to swell three years but they feel its too large to only be swelling.

Thank you, Michele. It's been less than 2 years since I had gamma knife so hopefully it is just swelling. All I know until my appointment is that the size increased. Thank you for the advice. Where do I find Chang's video?

My understanding is the first 5 years are response- swelling, shrinking etc - see Changs video. Definitely the first three years its unlikely regrowth. So try not to stress. Watch that video and maybe also chat to a member like Paul Wellen here who was told it had failed- but it was in fact pseudoprogression and he waited and it shrank again. Unless its pressing on a critical structure maybe consider waiting or even a steroid - chat to your specialist or get another opinion.

Welcome to the ANA Forums, nyori, and thanks for posting!

I felt so sad when I read your original post.  I wish someone had ordered an MRI when you started experiencing the tinnitus.  Then maybe they would have discovered your acoustic neuroma much sooner.  But that is water under the bridge now.

I'm glad skier posted.  skier is wise and gives good counsel.

I lost the hearing in my left ear while I was waiting for my second MRI.  So, I definitely understand the concern you have.  And I have learned, as skier said, that SSD can become a normal part of life.  Still, no one wants to lose their hearing if they can help it.

I also experienced debilitating loss of balance and kept falling down.  In fact, I fell down five times while they were testing me for my balance.  I sought out a highly recommended vestibular therapist who helped me regain my balance through vestibular therapy.

I don't know how the specialists are in the Netherlands, but I just want to encourage you to hang in there!  With proper treatment, life will either become better, or you will learn to adapt to your new 'normal' as many have on these forums.

I wish you the very best in your journey!
Don