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

I had my second MRI and initial consultation at Emory.  They have a good reputation.  I sought out a second opinion at the Mayo Clinic as I highly respect the acoustic neuroma team they have there.  The Mayo Clinic offers a video consultation at no charge -- so it does not hurt to touch base with them.  In my case, the doctors at Mayo completely agreed with what the doctor at Emory told me.  And that gave me a lot of comfort knowing everyone was in harmony.

Best wishes for your daughter as she continues along this journey!
Don

Hello my friend, I am aware this is a scary time for you. Hopefully you have had your surgery by now and everything is going as well as expected. That being said I know this is a whole new world for you and much adjusting to your new life and normal if indeed it has resulted in the right sided facial paralysis as expected. I also had a large/aggressive AN that resulted in right sided facial paralysis and right sided deafness. Long story short, in the end I had to have had to have: 1 original surgery, followed by a 2nd because of aggressive regrowth, followed by 28 rounds of max dose radiation, unfortunately that did not do it as what was originally thought to be the normal “swelling process/dying” of remaining tumor tissue ended up being regrown once again requiring a 3rd surgery. Although this is an extremely rare event and I do wish you all the best, I completely understand there will be new normals for you. Some things I have learned that may be helpful to you knowing sooner than I did was 1- eye care: lacrilube type stuff, punctal plugs, eye weight ect all unfortunately did not work for me personally but what is called a “ mini scleral lense” was a game changer. In combination with other things in regards to eye care but the mini scleral was an important one! If there is anything I could possibly answer for you or any issues I could help with I am more than happy to help if I can. Just an fyi, this journey started in 2014, it has been 10 yrs, I am an LPN by trade and have gotten myself back to work part time(because of chouce options at my particular hospital) with minor adjustments, a little bit more difficulty than I realized but not too an extent of being undoable👍🏻I am also from Canada, this site just seemed to have more information options than the Canadian version. All the best to you my friend, you’ve got this 🙌