r/AcousticNeuroma

Hi everyone.

I’m not one to leave posts but I’m at a point where I don’t know where to turn anymore.

I was diagnosed with an AN this March, I experienced minor facial numbness and tingling and loud tinnitus paired with the oh so lovely sudden hearing loss.

My tumor has grown nearly 3mm since then making it 8 mm now. I had my second mri done two days ago and was told if treatment doesn’t occur in the next while, the AN will be pressing on my brain stem which would ultimately mess with my vital functions such as breathing and heart rate.

In all honesty Im not too scared about that potential. What leaves me absolutely terrified is the possibility of facial paralysis. I know I sound vain but I was diagnosed at 22, I have had a terrible past couple of months with bad news after bad news in my personal life. I’ve been chronically stressed for a while and it’s definitely not helping with my AN.

As I’m typing I’m realizing it’s clear my thoughts are very scattered. I’m basically asking to hear from people who got treatment done and did not get any form of facial paralysis. And if you did please tell me how it’s not permanent.

I hope everyone’s having a wonderful summer! It’s been some time since I’ve posted in this group but it’s been a year since my Gamma Knife treatment so sharing in hopes this can help someone!

For background I was diagnosed in 2023, at 23 with a 5mm AN contained to my right IAC. My symptoms were sudden hearing loss, constant loud tinnitus and slight balance issues. I decided on W&W since my AN was small but every 3-6 months I would lose more hearing with worsening tinnitus without any growth. I saw doctors at Jefferson, NYU, UCSD, etc. & they all had varying opinions on treatment. Initially I wanted to get middle fossa surgery, even scheduled it at UCSD but cancelled due to chronic health issues flaring up. As time went on, being on W&W started to weigh on me since it felt like I was just waiting for my hearing to go. My apartment lease was ending early 2025 and I was moving back home so I felt like it was time to re-asses treatment; another pressing factor was that I still had a PPO plan under my Dad making it easier financially. It still took me almost 2 years to get to a point where I could make a decision on moving forward on treatment.

I went to NYU again, to talk to Roland about middle fossa and Kondziolka about Gamma Knife. I liked the idea of surgery but with my pre-existing condition (Ehlers Danlos syndrome) and only a 50% chance of saving any hearing, I felt like my quality of life would not improve much after surgery. It also wasn’t encouraging that I was declining in hearing without any growth. I really loved Roland as a provider though, will definitely go to him for a cochlear implant if I’m in need so I recommend him! After talking with Kondziolka, I decided to move forward with Gamma Knife and had it July 2025. I will say I’ve had a lot of procedures so getting the head frame was very easy for me! I actually felt relief because I suffer from tmj/headaches/migraines so the numbing was glorious. I took 3 days off work but was totally fine to drive the day after, really only had tension headaches but I suffer from those daily.

Whenever I noticed hearing loss/change in tinnitus, they would give me a dose of steroids - I’ve only had to twice in the past year. I had my 6 month appointment in January and everything is stable, including my hearing which is super encouraging! My hearing test looked the same as it did pre-treatment. I probably have about 60% of serviceable hearing left, I feel like the tinnitus makes it harder for me to hear than anything. I did notice that my tinnitus isn’t as loud as it was prior to GK but that could be stress related too, who knows.

This past year has been the most normal I’ve felt since the diagnosis. I’m sure a lot of it had to do with relieving the mental load but nonetheless I am very grateful for the care I received and my current health. I do worry about the symptoms that could appear as time goes on but it seems to sit easier with me now that I went through with Gamma Knife. I will say, life is a little different now; I have a shorter temper & social battery, I’m always the driver so long drives with a friend are now filled with music instead of conversations, when I go to dinner in a loud restaurant it’s going to be a lot of nodding. Don’t get me wrong, I get frustrated but as more time goes on there is less emotion tied to it. Really taking it day by day as they say! And shoutout medical marijuana - it helps me tolerate being in social settings or on days my tinnitus is unbearable

I had translab so no hearing on the right side and wear a CROS. I have been wearing Signias and they are just fine.

However, I have decided that I am obviously going to be wearing hearing aids for the rest of my life and it is time to get the best in class.

Working with my audiologist, I am going to cycle through the higher end brand for one week at a time and then upgrade.

Yesterday, I got fitted with Resound hearing aids. So far, better than my Signias. Less background clacking. You know like the little noises that are way too loud.

Would you recommend yours and if so why or why not?

I (M37) had my 5cm AN removed on the 8th in an 11 hour retrosigmoid operation two weeks ago today, the surgery was performed by Dr. Chamoun and Dr. Lin of University of Kansas Health.

I wanted to share where I'm at in my recovery and how things have gone for me to date with context.

Pre-op I had lost 90% of my hearing, so the adjustment to SSD hasn't been much of a change. My balance had slowly been deteriorating and I had to stop riding motocross over the winter because I had lost so much of my balance ability. Normal life stuff was still doable, though weight lifting had slowly become more challenging when doing single leg exercises.

Just about as everyone has shared, I woke up from the surgery absolutely spun out- though when I woke up in the recovery department the first thing I did was begin moving my face and touching my face with zero loss of function or sensation. I do not remember anything from that time until I was in my ICU room and waking up to my wife, sister, and dad there with me and how much I was crying out of appreciation for their love, the gift of a successful surgery, and being alive. The first 24 hours were absolute hell with how disoriented I was, and my eyesight was completely shot. It took about a week before I could begin to see normally again.

KU has a brand new ICU ward, and because it was so under capacity they just kept me in there for 3 nights before discharging me to go home on Saturday mid day.

As expected I lost the hearing in my left hear, the tumor was growing on my cochlear nerve and grew next to/into my cerebellum while stretching my vestibular nerve. Right now, my main focus is on regaining my balance to pre-tumor impact on my life which started about 10 years ago when I first started having some hearing loss. The surgery was, as Chamoun has called it, "better than best case scenario" as they were able to remove 100% of the tumor with zero complication to my facial nerve. It also detached from my cerebellum with relative ease.

Today, I'm able to function around the house independently, and this morning I rode my kick scooter in the driveway a little just to feel some wind in my hair even though I felt like a wobbly noodle and it gave me a huge breath of fresh air.

Last night we went to dinner with another couple and it sucked even though we went to a relatively quiet spot, I struggled to be part of the conversation. However, it was a huge milestone and I'm glad I forced myself to say yes to going out.

The one surprise is how unprepared I was for such extreme an impact the steroids would have on me. Every classic "roid rage" symptom was in full swing, and I had near full on insomnia for 4 days after getting home. Yesterday was the final day of tapering off the steroids, and I am leveling back to my normal self which is that of a very happy go lucky person who is not affected by what people say. While I was at the strongest dosage point, if my wife so much as looked at me with concern it pissed me off, or the tiniest inflection in her voice I would demand to know "why did you say it like that". This is not at ALL the type of person I am. Luckily we are extremely communicative and I would apologize, even last night I made sure to tell her how sorry I am for not being myself over the last two weeks - this part of the recovery really surprised the both of us but we're already laughing about it.

Because I was a professional athlete for over 2 decades, I came into the surgery under very good physical condition and I feel that my recovery so far is reflecting that. I know that I do have input toward my balance recovery, but much of the process to get my balance back to what it was a year ago will take some time and patience. This idle time of being on disability away from work with total loss of agency to leave or be independent is a challenge, but with all setbacks or injuries I've had over the years I see this entire process as just another character building exercise.

I will recover better off than I came into this.

28, partial hearing loss left ear, tinnitus, balance issues, full ear, word discrimination (and feeling less in my left face cheek) mri-upcoming, unfortunately fearing the worst...

2 months ago i suddenly had partial hearing loss (20 db), i was put on prednisolon for 2 weeks because it seemed like i had an infection or something along those lines. Hearing seemed to get better because the liquid behind my ear drum cleared, but after the 2 weeks my hearingloss went back to where it was. Last month my hearing got worse (30 db), i waited because i hoped it would clear up, but it didn't. Another hearing test (last week) and the doctor said an mri and bloodtest should help clear up what the problem is. The thing is, the mri is in 2 months, and if my hearing gotten worse last month, then it isn't the craziest thing to think it might get worse in the next to two months. I'm starting my research internship in september, and i'd like to know before that what is going on. Would it be unreasonable to ask if the mri could be pushed up and is that even possible?

I'm aware there is a high work pressure in hospitals and that there is most likely a waiting list and i don't want to be selfish! Since there are probably dozens of people who need an mri way more than i do...

What do you think? Does anybody have any experiences like/with this?

Please be nice to me, english is not my first language, so maybe some things might come across not how i want them to come across (and i'm sorry about that!)...

Hi everyone, title pretty much covers it - I know this isn’t just for VS-havers, but after his surgery, he will very likely be completely deaf in his right side and will need cros hearing aids. If anyone in here has had the surgery, what was recovery like? What helped you heal better; or feel better? I’m talking all the details - down to maybe if crunchy food made you feel dizzy. I want to give him the best care I can and I’m freakin out 😅🩷

I do know he needs a button down shirt after surgery but that’s about it. Eye cover for the car ride home? Hat for some pressure? Let me know!!!

How do you get over the anxiety of having to go back to work?

Living in Australia btw.

About 3 weeks ago I had an episode of sudden onset sensorineural hearing loss, treated immediately with steroids and hyperbaric and per audiograms this pretty much fully resolved but there was some high frequency hearing loss on the right, and I recalled noticing that my hearing seemed a little reduced on that side prior to this. 100% speech recognition.

Had an MRI today and the radiographer (not radiologist) clearly had seen something and asked me to come back soon for a contrast scan. Being a health care professional I asked her to level with me and she said she saw something "pressing on the nerve", that is looked benign and probably an acoustic neuroma. I know what they are due to my profession but I have never really deep dived if I'm honest.

Anyway so now I'm in the terror phase, no idea what to expect or how to process this, awaiting the contrast scan tomorrow and then I guess a specialist review in a week.

Any words of wisdom or things to keep in mind at this stage would be very welcome. I am asking ChatGPT to find my posts by people who are, regardless offering outcomes etc., living life happily years later - that kind of thing would be nice.

Also I have quite intense sinus and eustachian tube symptoms on the same side (crackling, popping, fullness that comes and goes, post nasal drip, crazy sinus pressure, boominess to loud noises when that ear is crackling and blocked feeling) which really throws me off and constantly make me worried for my ear, although it seems very intermittent, most of the time the ear feels basically fine and hearing fine other than pre-existing tinnitus flaring lately.

Found out last week (7/6) that I have left side AN (2.8 cm by 2.7 cm). I'm 43 (m) and have been having symptoms going on for about 1.5 to 2 years. Started as mild and intermittent headaches/ disequilibrium/ dizziness that I chalked up to stress and too much time in front of the computer at work because the symptoms didn't seem to be noticeable in the morning and on weekends. About a year ago I suddenly lost ~50% of my hearing in my left ear one day, and long story short, after many tests and other treatments (hearing, ENT, vestibular PT, etc. etc.) over these past 11 months I was finally given an MRI. Prior to last week I had never heard the term acoustic neuroma so this is still sinking in honestly. Glad to finally have a diagnosis and getting into the next phase though. My 50% hearing loss mostly recovered (maybe 20% loss now?) but the feeling of pressure in my ear never went away. Aside from that, my symptoms (dizziness/ balance, headaches, ear pressure, fatigue, tinnitus, etc) have all been getting worse over the past couple of months...

I've had a second MRI since the diagnosis and have a consult with a neurosurgeon (UCSD) on Monday. I already have a list of questions from reading/ searching here and the ANA website, but I wanted to ask what questions did you ask (or plan to ask) your neurosurgeon that helped to fully understand the diagnosis and treatment options? I know this first consult is likely just the start but hoping to get as much useful information as possible from the get go.

Thank you!!

I started noticing some hearing loss in my left ear a year ago. At the time I was battling addiction & personal problems & didn’t really care. Well. It got worse over the year. I got sober, I got a brand new better job, I was turning my life around. Then I noticed I couldn’t feel half my face anymore. Just got the results that I have a large tumor. Like 3.5 cm. Someone give me some hope lol. My doctor hasn’t discussed it with me yet. I’ve just seen the MRI report and waiting for their call. It’s horrifying lol. 35F

I haven’t been diagnosed yet, it is just suspected at this stage. I went to an ear specialist because I was noticing some hearing loss and a fullness feeling on the left side, and she requested an mri to check for an acoustic neuroma after seeing asymmetry in my hearing that she considered to be enough of an anomaly to query. The soonest I could get in is early August, so I am anxiously awaiting that. But I have seen that most people are under the care of a neurologist, not an ear specialist. I see a neurologist for migraines and some other issues, but he is a DO, and while he is fine, I wouldn’t expect he would be appropriate for this. If I am indeed diagnosed, how do I go about finding the best possible doctor? Are there doctors who specialize in these tumors?
Thanks for any help!

Over the past year I've been shopping for term life insurance and wanted to share this in case anyone else is too. I could write a book on the frustration I've had trying to convince insurers that my 3mm AN is not going to kill me, especially after having it successfully treated via FGK radiosurgery 8-years ago (when it was also 3mm).

I had read that Pacific Life was especially understanding of acoustic neuroma's so when my insurance broker suggested we get a quote from them, I was excited that finally maybe someone will give this otherwise healthy 60-year old a decent quote. Not to be. Pacific Life responded that because I hadn't had my 3mm AN "completely resected" I was at high risk and while they would insure me, the price they quoted was so astronomically high they should have just said no and spared me the insult.

Try arguing the finer points of AN treatment with an insurance underwriter...you can't.

In any case, I ended up having a decent experience with Lincoln Financial and ultimately got insured at what I felt was a fair & reasonable rate although I will say it does take some time for any insurance company to complete their reviews and approve you, which I guess is understandable when you've got a "brain tumor."

One final oddity regarding getting life insurance...through work I had applied for additional life insurance and if you want more than 2x your salary you need to do a medical exam. In 2024 MetLife (our insurer through work) rejected me because of my AN, but just for the heck of it I applied again in 2025 and they accepted me. Go figure. In any case, I guess my advice is if you're looking for life insurance, don't give up and use a broker who can shop you around for the best rates. Oh yeah, and screw Pac Life.

Anyone in their 30s who opted for radiation instead of surgery for medium AN?

Hi,
I've experienced some symptoms of AN (hearing loss, dizziness/balance issues and tinnitus except I've had tinnitus for as long as I can remember)
Went to the doctors, ear was fine and started on Prednisolon and got a few injections. Hearing haven't gotten better. I still have pressure in that ear aswell, even though I know that possible results can take a while. It has been about one month from getting those injections so I am trying to stay hopeful.

The main part what I am scared about is that if I do have one and have to get surgery, there would be a huge risk of becoming fully and permanently deaf. I have already lost my hearing on my another ear in my childhood.

I probably have my MRI in the autumn and I am beyond scared of it.

I don't know what I am seeking for with this post but I just had to get this out somehow.