I just had a second surgery to completely remove my AN, they took my facial nerve so I woke up with one sided facial paralysis. I am scheduled to have Cross Facial Nerve Graft aka Facial Reanimation surgery in July to restore my smile and get my eye closing completely again. The doctor told me the sooner you can get your nerves back up and working the better your outcome will be, after two years the muscle begin to atrophy and you will need muscle transplants and outcome is not as great. If you are having any facial issues and waiting see if it improves I highly suggest seeing a specialist asap. After my first AN surgery they only took 75% of the tumor and I had no facial issues and after a month I was pretty well back to myself. Unfortunately my AN regrew, even after radiation on the piece left behind. This time they took it all including the facial nerve so I know I will not get movement back so time is of the essence and there is no need to wait. I will update how it goes after I have the plastic surgery. They plan to take healthy nerves from my legs (controls sensation to the top of foot) and put them in my face to get me smile restored. Medical technology is amazing! The most important thing my doctor said was don’t wait, get Facial Reanimation specialist option right away. It take a year to see results!

I haven't had the same procedure, but I've dealt with chronic headaches myself. It's tough when even medication doesn't provide consistent relief.

Dan,  Thank you very much for replying and telling me about your experience.  It helped alot!  I'm still struggling with the decision to pull the trigger.  All the experts that have seen my latest MRI in March 24 say, the tumor is clearly growing a small amount and treatment is recommended.  I'm having some dizziness and it has been going on for awhile, but it's unclear if the tumor is the cause.  I was trying to get a definitive answer on if radiation will mitigate dizziness, but haven't gotten a clear yes or no.  I was told after surgery & once the remaining balance nerve learns to adjust, dizziness will subside in time. (this is the only reason why I may favor surgery or radiation)  No one wants to live with non-stop dizziness!

Thanks again!!!  And, if anyone else reads these, please feel free to opine.  I've learned much in the past two years through this website and other channels.

d 

Hi Amy. I was diagnosed with AN similar to yours. Left ear, similar size, but I had already lost most of the hearing in the ear. I was sent for the MRI when I failed a hearing test. I was diagnosed in April 2022. I was referred to a neurosurgeon and met with him in June 2022. He only does surgery. I had decided on radiation so I was referred elsewhere and met with doctors in July 2022. I had gamma knife in August 2022. The head frame is not as bad as it appears. I was not back to normal in 2 days like some people. It took time. I had vestibular rehab in November 2022 but the balance problems occurred a few months later. I had my one year MRI the end of July 2023. Everything looked great.  A few months ago headaches got worse and facial spasms started. I had an early MRI last month. It shows my tumor has increased. They're not sure if it's swelling or growth. So I need another MRI in October and may find out if I need surgery. I don't want surgery.  Headaches seem to be common for most of us along with constant tinnitus, vertigo, balance issues and ear fullness.  I have great days and bad days. The wait from one appointment to the next certainly does feel like an eternity though, doesn't it,? It's not easy to adjust to a new normal. It's not easy to identify as a brain tumor patient.  For the most part, things went as expected for me and went well up until recently. I live in a small town so my neurosurgeon and neurotologist are 3 hours away but always available by phone or within the my chart app.  I had avoided research of surgery but have started looking into options just in case. My understanding of the Mri report is that the tumor is attached to the nerves and in your case (and mine in 2022) it's growing toward the brain. Mine has increased enough to be leaning on the brain and making contact with the brain stem but I'm very hopeful it's a bit of delayed swelling. I've read there are cases of pseudoprogression at 6 months and delayed pseudoprogression at 18 months. So I'm hanging in there and not making any hasty decisions about surgery. I sleep more than I used to. I exercise some but I don't overdo it. I understand how you're feeling.

Hello -I am in Western MA.  I was just diagnosed w an Acoustic Neuroma by MRI w contrast. Just got results on May 1st. Report says :There is Enhancing lesion in the left internal auditory canal which protrudes into the cerebellarpontine angle cistern consistent with a vestibular schwannoma. This measures @ 14mm transverse x 9mm AP  x 6mm cranioaudal. Brainstem appears normal. Fourth ventricle is in the midline.

My GP has referred me to an ENT-- the 1st available appointment anywhere thus far across the state is July 19th , at a satellite office of MA Eye & Ear. The Boston Eye & Ear main hospital told me the 1st available opening was not until January of February !! This is the beginning of May  Is it normal to have such a long wait?

If anyone has any insight on my report, or advice in general, please feel free to share with me.   I have been reading a lot and am familiar w treatments but of course there are still so many questions. Mostly timeline and appointments - choosing the best Dr. etc.

--> I have had 2 past CT scans of my head w out contrast which were "normal" , no findings.  Both times were ER visits from HORRIBLE SUDDEN vertigo. Tumbling and spinning . Vomiting - and all other bodily functions lost all together beyond my control. Inability to speak or think. The 1st  was @ 5 years ago , the 2nd was  last March 2023. They feared stroke thus the CT scans. No stroke   "Vestibular neuritis" was what I was discharged with the 1st time after a few days stay -- last year it was "vertigo". Each time the vomiting and spinning only stopped after anti nausea meds + IV Prednisone. Walking was difficult days after. I have had a few mini vertigo attacks that were short lived but passed and did not require a hospital visit.

Over the past 5-6 months I have begun to get headaches way more often than usual -daily at times @ 5pm or upon waking- cluster type behind my left eye-(but I do have pinched nerves  cervical spine also )  I have mild ringing in my left ear, pretty much always , but ignorable - It's worse when it's quiet - I keep white noise + fans on -- at night when I lay flat  in bed ringing is louder. I haven't noticed any hearing loss. I do have periods where ear feels full or clogged and my jaw at same time in very back at hinge area kind of dull numb. This had decreased since i started taking allergy medicine daily.  I am a bit unsteady wobbly on feet but I have always been clumsy ) I have found my self queasy more as of last 2 months- car sick feeling almost and especially when in restaurants or busy gatherings. Weird. I know.
Thanks for listening . I look forward to any advice )    ~ Amy