I have had ear pain for close to 8 years (two before diagnosis which led me to the MRI finding) and it has persisted after treatment with CK. I have no other symptoms except this one. Its deep in that ear. It affects my sleep (wakes me during the night) and I cannot lie on that side for long. Audiologist, doctor looked and nothing to see (camera revealed nothing). My CK specialist and a neurosurgeon I saw for his opinion said its not common for AN. I am only taking CBD now and again for the pain. Does any one else have this? Sometimes the pain is behind that side eye but an opthalmologist I saw said nothing unusual going on. Unsure where to get help now.

That's very good news Stella! I'm going for third MRI, 3 years post GK. They gave me annual MRI plan for 5 years post GK. So far my AN is stable and reducing a little. Looking forward to having a break on MRI like yours in the near future:)

Thats great news! And very interesting on the Keytruda too! I read this today also re an immune therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8162073/run 3

Thanks for sharing that link! Really helpful to see more info on immune therapy and its potential effects. It’s encouraging to know there are positive cases out there.

Thats great news! And very interesting on the Keytruda too! I read this today also re an immune therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8162073/

I have shared my story on here a couple times, and understand that everyone's experience is their own unique journey with this, but for me personally, the surgery was the best thing that happened to me in the past two years.  I had severe hearing loss, balance issues, and a headache that never went away, the headache lasted for over two years.   The first two days after surgery were absolutely miserable, had me questioning my choice, but by day three things changed drastically.  I was off of all pain medication by the end of day three, not even Tylenol, and I've not had a headache since.  I also did have double vision for about a month and a half but that has resolved itself too.  I very quickly started walking again, and while for the first week or two I described it as looking like a drunk toddler, I was walking unassisted (but not pretty) for up to a half mile at a time by the middle of week two.   Yesterday 8/13 marked 3 months post op for me.   I not only walk normally and rarely have any balance issues, I am actually running 2 miles on the treadmill and training for a 5k.  The surgeon initially said I would be totally deaf in my left ear but they were able to save the nerve for hearing and I actually can hear a little out of that ear.  (Not much, but it wasn't much before surgery either so no big change there) Now keep in mind that I am not a young patient, I am 57.   I would think your recovery could be even better because you have youth on your side.   I don't know what your expectations of normal are, but I feel way better now than before surgery.  Now the incision site is still sensitive, and wearing a hat can cause discomfort, I assume that will eventually go away, and the area sometimes has a numb feeling to it also.  But overall way better than before.   I saw you had another post about scuba diving.  I do not have any experience with that, but I would guess the doctors would advise you to wait quite a while on that since diving involves increased pressure, but that's a good question for your neurosurgeon the next time you talk.