Hi All,
Though I am not very active on the forum lately, I do like to post my MRI results each year in hopes that it helps someone who has struggled with their post treatment path. I did show necrosis the first year, but definitely had issues for the next three years that followed with an increase of the tumor, along with 60% hearing loss.
I had my 6th year GK anniversary MRI today and was told that the tumor appears to have shrunk a bit more. I was definitely a late shrinker, as I did not have shrinkage until at the 4 -1/2 year mark. From that point on to present, the tumor appears to have shrunk 3 MM's or more and he said the tumor was now "significantly smaller" than from the past MRI's. I was previously told to have more treatment at the four year mark, but opted to wait and see. My local neurosurgeon agreed with my decision and we went back over the decision again today that treatment would have been "for nothing" in my particular case.
I have graduated to a 1 and 1/2 year schedule now for my MRI due to being stable. For those who struggle with not knowing what to do at a specific point in their post treatment journey, I hope this will offer hope. It is from this forum that I received my encouragement to wait and see based on someone else who was in a similar situation four years out.
Keep the faith when things seem discouraging! If your tumor is of a certain size and your symptoms do not seem significant or different, a wait and see approach may be in your best interest.
I wish all my fellow AN patients the best in their journey. So glad this forum is available, as it truly is invaluable.
