FSR Update-6months

[Dealy]

I got my MRI update from Johns Hopkins this morn. Right side AN is showing signs of central necrosis. Neurologist indicated this is reason for current symptoms due to necrotic changes. That being the resonating sounds in my ear. Did not indicate when or if that would clear up. That was the good news. Now the bad news. Indication of enhancement of left ear from surgery to remove AN 18 years ago in left ear. Does not indicate this is a tumor-just enhancement. The place where I got this MRI ruled out tumor recurrence. However my ear aches and tinnitus has increased since last week. Question to anyone-how can this be since my balance and hearing nerve was removed completely 18 years ago-all that is left is the facial nerve? Anyway I guess I got some good news and some news that I did not want to hear about the left ear? Ron

[ppearl214]

Ron,

THRILLED with the update on the central necrosis!!!  I'm doing the Snoopy happy dance for you! GREAT news!  Congrats!

I'm curious about the other issue you note... possible scar tissue?  I haven't had enough coffee yet today, but mebbe.......

Still sending MAJOR congrats huggles to you!
Phyl

[Lorenzo]

Congratulations!

On the other issues, tinnitus is not directly related to the hearing nerve but it's caused by the brain. As for the pain, it might not be either. Could there be another problem within the ear?

Lorenzo

[Dealy]

Thank you Phyl and Lorenzo for your thoughts and kind words. I am happy in one sense-but just hope I do not have to deal with another one of these. I am thinking of sending my MRI Disc and reports to surgeon in Kansas City Missouri who did my first AN surgery back in 1988 and get his input. I hope it is just scar tissue Phyl-but it still has me worried since my ear kinda aches on the left. I never really gave the left ear a thought in 18 years since it was dead anyway. Thanks-Ron

[Jeff]

Hi Ron,

After my second surgery on the right, my doctors said that they had completely removed the tumor. However, about a year later my MRI radiologist reports noted a small enhancing area. However, my doctor at House said that it was not regrowth. The radiologists continued to note it for 1 1/2 years (3 scans), but eventually changed their impressions to state that with newer enhanced views that the enhancing area was not regrowth. I would definitely send the scans to someone whom you trust.

On another note, I am interested to follow your progress as time goes by. As a fellow NF2er, I want to know about radiation in the context of NF2.

Best wishes,

Jeff