8 years since AN surgery

[JLR]

Today, Nov 1, is 8 years since my AN surgery.  No hearing right side, eye very dry, finally can close, balance continues to be wobbly even after PT.  I had what I thought the best of the bests surgeons but chatting with other AN Patients they didn’t go thru what I did.  Spent a week in,hospital then a month in rehab and 2 weeks in a sub acute facility. I do have yearly brain MRIs to make sure all is ok and will continue to,do so.  I had my surgery NYC. Just needs to vent. Hello to all my friends on this site. Stay well. JLR

[JLR]

Yes exactly!! My tumor initially got smaller with the Cyber knife. But after about six years, it started to grow, and it was just like yours on the facial nerve and on the brain stem which made it difficult to remove in its entirety so here are the complications on my right side same side as the acoustic neuroma I would not close eye for many years. My husband had to tape my eye at night in order for it to start to heal. it is later I can close it absolutely, but yes, it’s absolutely dry and I have to drop in absolutely every single day several times a day. I have facial pain all the time I’m used to it so it’s not so bad and my right side of my face has absolutely no wrinkles unlike my left side of my face which has wrinkles  to the surgeon six months after the surgery, he replied you’re not dead and I thought well that’s true. I’m not dead so I just move forward. But I wonder that I chosen a different surgeon. The outcome would’ve been better. I just don’t know. It was a gooda woulda shoulda. The problem always arises when the two too close to the brain stem. Sometimes the risk of having it removed is kind of better than winding up with a stroke or worse. I wish you good luck. Keep doing those MRIs to make sure that you’re OK and if you have surgery, make sure you got surgeon with a great track record. Stay well.

[mwatto]

Its concerning to read your journey and I feel for you. I am at 6 years next Feb and had a similar size, location and three fractionated CK sessions. Although my trigeminal nerve looks fine per last MRI and the AN has shrunk by half I continue (less now) to get deep ear pain, eye pain that side and deep in head if I lie on that side. Next MRI will ask for focus on the facial nerve. I also have dry eye in that side .  I have read and saw on on video here that ANs can regrow as late as a decade after treatment. I work on inflammation as best I can to prevent this. I really hope there is a breakthrough with AN prevention soon or at least less invasive options. I am so glad you have recovered over time, how brave you have been.

[DanFouratt]

JLR, Sorry about your issues. I wish I had something to help.  I am 13 months post CK. In that time I have developed no new symptoms, I hope it continues.

Best of luck,

Dan

[JLR]

I too continue to have Trigeminal issues. Although the surgeon at time of surgery managed to separate from tumor but I have facial issues everyday and on going numbness which will never get corrected.  I think I just waited to long to have surgery. The CK was great so I thought but the radiation made the tumor grow. like everyone on this site we continue to move forward.  Thank you all for caring.

[mwatto]

Hi I do not think (from everything I have read) that CK makes a tumor grow - rather it keeps growth in check or with luck reduces volume. It is more likely that there were still some active cells unaffected by the radiation and that inflammation or various intracellular signalling pathways were in play.