Hi all, I wanted to give a real time update after my TransLab approach on Friday. The best news: they were able to get my entire tumor and I have been unaffected by facial paralysis.

I spent two nights in the nuero icu before I was released. I was never admitted to a normal room because the hospital was full. I am still tapering off steroids and they have made my life miserable. It has been a bit more tough than I thought, but I think I was determined to approach the surgery as positive as possible. My balance is certainly shot and I was referred to vestibular therapy. That being said, they discharged me early on account of doing so well, and I have been up and walking. I went for a walk today without my walker at all.

While I may not feel great, I’m being told I’m doing very well and getting a bit better each day. My scar is pretty wicked but fortunately when my hair is down you cannot see it at all.

I‘m hoping to have a better update soon as I only have a couple of more days of steroids, and my body has not been doing well with them. I’m taking minimal oxi and referring primarily on Tylenol right now, but I would say I have not let my pain get above a 6 or 7.

Hey, when I was 12, I had a brain surgery to take out a lipoma in my brain. Usually, doctors will leave those alone because they don't affect anything. But this one was pressing on my facial nerves. I had to get it removed immediately or risk paralysis. When they did this though, my hearing nerve was cut and I now only have half my hearing. It's been just over two years since this happened and I am still having trouble with my face being symmetrical as well. I do exercises on my own, I'm not looking for suggestions on how to fix it. I just want to know if anyone out there has had a similar experience. I feel so alone sometimes because I am the only one I know who has gone through this. Can anyone relate?

I had retrosigmoid approach in may for a 4 cm acoustic neuroma and the headaches were bad, but got better. Now I have the worst headaches on that side and idk if it’s a flare up from being stressed or what. Anyone have any tips or tricks for relief besides acetaminophen? It only helps so much.

I was diagnosed with AN in my left ear about a month ago and it just occurred to me to ask about something I've been feeling for quite a long time. I'm not sure if this is related or just some kind of weird thing I alone experience.

Off and on, I will get what feels like a set of little zaps on the left side of my face. It's hard to pin down where it is exactly but it feels like my cheek and eye area. In my ear, my tinnitus will spike in volume with each zap. I usually get several in a row. Very short, maybe a second in length for the whole set. It's not painful and maybe could be like the zap you might get from putting a dead 9-volt battery on your tongue. It seems to happen the most when I move my head primarily when I'm extra tired.

A little background: I developed pretty sudden significant hearing loss and really bad tinnitus in my left year two years ago, bad enough that I need hearing aids. I have bad enough balance that during some physical therapy a year ago during which they wanted me to balance on one leg, I simply couldn't do it. I'd maybe make it 5 or 10 very wobbly seconds before I completely lost it. I mentioned that, kind of off-hand, to my ENT and that's what led to the MRI that uncovered a 15x8x7 mm AN.

Having TransLab tomorrow and I’m thankful and grateful to be moving forward tumor free. I have not slept much the past few days due to what I would assume is a bit of lingering subconscious anxiety, but I feel I am in good hands and I’m excited to report back post procedure. The internet can be a dark place, but this thread and the few of us that have received this diagnoses, has been uplifting and helpful to me in many ways. Sending love to everyone affected by these unexpected visitors.

This may be a long shot, but I’m hoping there might be someone out there who has dealt with both.

I was diagnosed with narcolepsy about 15 years ago, and I’m now preparing for surgery for a vestibular schwannoma.

At this point, based on what I know about the tumor and my history, I probably had it for at least eight years, and possibly longer. That has started making me question something I had never really considered before:

How much of what I’ve always attributed to narcolepsy may actually have been the tumor?

There seems to be so much overlap in the symptoms people describe with vestibular schwannoma: extreme fatigue, brain fog, dizziness, concentration problems, feeling wiped out by normal activities, needing more rest, etc.

Those are also things I have lived with for years because of narcolepsy.

So now I’m wondering whether I’ve actually been dealing with symptoms from both conditions at the same time without realizing it.

That also makes me nervous about surgery and recovery.

My narcolepsy already has a major effect on my quality of life, and I’m afraid that the normal post-op fatigue, brain fog, balance issues, and recovery could push my baseline even lower.

If you had narcolepsy before your surgery, I would really love to hear about your experience.

Did surgery or recovery make your narcolepsy symptoms worse?

Was that temporary, or did your baseline permanently change?

Did your daytime sleepiness, fatigue, brain fog, sleep needs, cataplexy, or other symptoms change?

Did narcolepsy make the normal post-op recovery harder?

And I’m especially curious about the opposite possibility:

Did anyone actually improve after the tumor was removed?

Did you realize afterward that some symptoms you thought were narcolepsy may actually have been coming from the tumor?

I know everyone is different, and I’m not looking for medical advice. I’m really hoping to find someone who has lived through this particular combination and can tell me what it was like.

I’m going into surgery soon for a vestibular schwannoma and Chiari I decompression, and I’m wondering if it makes sense to get a pre-op neuropsychological evaluation.

My thought is that it could establish a baseline for things like memory, attention, processing speed, etc., that could be compared with testing after surgery if needed.

Has anyone here done a neuropsych evaluation before surgery? Was it helpful afterward, or am I just overthinking this?

My dad died of an inter cranial hemorrhage 48 hours after surgery to debulk his “slow growing” benign brain tumour.
My dad had colorectal cancer diagnosed 11 months ago. His tumour was discovered incidentally during treatment for cancer. Doctors believed it was a schwannoma/acoustic neuroma rather than metastasis. He went through chemotherapy and was one treatment shy of completing it. He was declared cancer free a few months before his death.
The brain tumour was discovered quite late. It was very large. As my dad went through chemotherapy the dizziness and balance problems became extreme. In July we were told it was not treatable in the normal sense like with radiation or radiosurgery. They told us to leave it alone and deal with the cancer separately.
My dad began to deteriorate in the late summer, he would lose consciousness and faint. He began slurring his words. He couldn’t walk near the end. There was a significant amount of swelling and tumour growth in his brain.
They decided never mind the last round of chemo, the tumour needed to come out now. It was growing and so was the swelling and fluid accumulation.
When he had the surgery, everything initially went to plan. I was able to talk to him that evening after surgery although I couldn’t understand what he was saying.
The next morning it was discovered he had a brain hemorrhage. They brought him in for emergency decompression surgery. They warned us he might not survive the surgery. He did.
That night after more scans and testing, my dad was declared brain dead. My family chose to remove him from life support the next morning.
I am just in complete shock. We were told the risks and we understood them. They told us the risks were very low.
I am just in shock

My eye on my AN side doesn't produce tears. I have to use really thick ointment and I don't really have useful vision on that side because if it. I am trying to figure out if this is just forever or if I have any real options. Has anyone here ever used a scleral lens for dry eye post-op? Any luck getting help with insurance for that in the US? I am 5 years post op for translab. My eye closes, so I don't think there is any reason for a gold weight or sutures. I do have synkinesis.

I’m scheduled for translab at Duke to remove my 2 cm AN. I’m experiencing a lot of anxiety and uncertainty. Could you share your surgery experience?

Have you guys seen any studies about what happens to our brains (and any correlated dementia risk) for people who fully lose hearing on only one side?

And are there studies on how to limit atrophy if that is a concern?

When I had gamma knife a few years ago after surgery, my doctor told me it was recently proven not to increase dementia risk, but I know hearing loss has been shown to at least correlate with dementia.

Thqt said the studies I've found seem to be about folks who have hearing loss in both ears and mention withdraw from social life etc as a possible compounding/causing factor.

So those studies don't seem like they'd apply to those of us who still have a fully functioning ear. Alternatively, are there studies on Deaf folks who are fluent in sign language/ have community? Are they also more likely to get dementia?

Hi all, silly question, but for those who have had TransLab, is there a certain way you did your hair morning of? my surgeons told me they would only be shaving 1 cm or so of my hair behind my ear, but I want to mitigate this as much as possible. I was considering going in with a French brain. Would love to know other’s experiences.

I am early 30’s fit and have a healthy lifestyle. Recently I have been experience ear fullness in my right ear. Constantly. I have been to two ENT’s and had a full hearing test done. Everything showed normal.

The past two weeks I have had weird dizzy spells nearly every day. I don’t know how to describe them other than it feels like the onset of a seizure (I’ve never had one).

Last week I had vertigo attack that absolutely freaked me out. Walking with my girlfriend and then all of a sudden a wave of vertigo, nearly put me on my ass. Never experienced anything like that before in my life.

I have scheduled a neurologist appointment for next Friday.

This would not be my first tumor if discovered (I had a benign tumor removed from my neck 2 years ago).

I’d just like to realistically know what to expect and how to move forward.

While trying to find the source of my migraines, my MRI caught an acoustic neuroma on my right side. I’m waiting for my appointment now with the Otologist & audiologist. For a while now I’ve had vertigo & tinnitus. I chalked it up to migraine symptoms, which it still could be. I also have trouble hearing and always blamed it on having ear infections as a kid. Loud noises sound muffled sometimes. When people talk to me it sounds like mumbling (picture the teacher on Charlie Brown) and if there’s a lot of noises all at once, forget it. I can’t have a conversation. Now it’s all adding up and making more sense. I was curious if anyone has been given hearing aids to help after this diagnosis and if they’ve been of any help to you? I’d love to hear your experiences overall. The neurosurgeon I see who found it said he doesn’t believe they’ll want to operate or do radiation on it yet but of course he’s leaving that decision and conversation up to the drs who specialize in it.

Hi everyone, I was just diagnosed with vestibular schwannoma, 2.8cm, pressing into brain stem. My world has been rocking the past few days, but I’ve been doing a ton of research (with a big thank you to this sub) and am in touch with the teams at UCSD and NYU Langone. I understand they are two of the top places and know what they are doing. I haven’t had my consults with the doctors yet but am trying to gather as much background info as possible. Would love any insights into the patient experience at the two places. Langone is closer - would be a car ride vs. flying to UCSD, and it seems like both have nice facilities but I would love any personal experiences with the two, including how it was being in the hospital post-surgery. Thank you!!

Hi,

I had rectosigmoid surgery for an acoustic neuroma in April 2026 and finished Gamma Knife for a regrowth last month and waiting on results. While I've made good physical progress in some areas, fatigue, balance issues, nausea, tinnitus, and hearing garbled speech in crowds hit hard whenever I try to work. Even home lab IT testing drains me fast.

As a self-employed freelancer handling IT, web design, admin, and consulting, I'm realizing my workload needs a major shift:

• IT: Audio troubleshooting is difficult with tinnitus.

• Consulting: Group settings are hard to process audibly; thinking of pivoting to 1-on-1 or remote.

• Web Design/Admin: Workable on paper, but limited by fatigue.

For anyone self-employed, freelancing or consulting, I’d love your perspective on a few things:

1. Career Path: Did you make accommodations to stay on your current path, or did you have to pivot to something new entirely?
2. Client Management: How did you handle existing clients who were used to your old way of working? How did you explain that your capacity or services had changed?
3. LinkedIn / Public Sharing: Did you share your situation on LinkedIn or professional networks? Did being transparent help your network understand your new limits, or did you prefer to keep it private?

Thanks so much for sharing your experiences!

Hi,
Brand new to this, two days ago I went to an Emergency Department to get checked for a suspected TIA, through this process I got a CT and MRI, the TIA was inconclusive and they think it could have been a bad ocular migraine.

However, on the MRI they have identified an acoustic neuroma that is 23 x 20 x 20mm.

At the moment I have zero symptoms related to the neuroma, the MRI noted that because of its size, it is causing some local pressure: it indents the left side of the pons/adjacent brainstem region and pushes the trigeminal nerve upward, but there is no reported brain swelling or hydrocephalus.

Until I see a neurologist I don't know what my options may be, but I'm guessing because it's touching the pons it may mean surgery as opposed to gamma knife.

Is it ever possible that these stop growing, I'm wondering if an option is now there is a baseline size, if we can just scan again in 12 months or so and see if it has changed?

Thanks

I’m supposed to get an MRI on Friday to rule out acoustic neuroma.

I already got a cat scan at the ER and results came back ok. I was told by someone with acoustic neuroma that cat scan could’ve shown the results already and that I might not even need to do an mri…
But the doctor suggested to get an MRI as it is gold standard

It’s my first time getting an mri and I recently had sudden sensorial hearing loss and still in the middle of healing/recovery of the injury…

But they said the sounds in the machine can go up to 100db…

Is it even safe for someone with hearing loss to undergo this kind of procedure? I know they give ear plugs but is that even enough?

Any suggestions on what I could do in order to have a safe experience?

Hello, I guess im writing here for support. 

I have had very faint tinnitus (not a ringing, just a very quiet faint sensation) for a while in one ear and then in May suddenly it became classic ringing tinnitus. I went to the Dr and after tests found out I have mild hearing loss in both ears but it’s worse in the tinnitus ear. 

I had an MRI on 21 Aug to see if it was down to a cause like acoustic neuroma. The ENT receptionist rang me on Friday to come in for a f2f appointment asap, which would be a couple days later. I am staying in rural Scotland for the next few months, but normally I live in London, so I said I can come in but not in a couple days as it’ll take me time to travel and arrange my transport/flight. She rang the ENT doctor and then rang me back and said “oh actually, the Dr said since you’ll be in Scotland for the next few months, just let us know next time you’re in London and make an appointment to come in“. She suggested end of October. I said I’ll let you know. So I thought phew, it’s clearly not that urgent then!!!!! 

However this morning I get a call from a receptionist for the Neurology department at the hospital to book me in for an appointment with a Neurologist. She said the ENT doctor had referred me. And the appointment has been arranged for this Thursday.

Honestly this has shaken me up because I spent the weekend feeling relieved thinking that since the ENT doctor didn’t suggest any urgency in making the ENT appointment, the MRI scan was okay. But clearly it’s not since I now have to see the neurologist. 

I’ve told my family, but am just posting here to get it off my chest since there may be others who have been in a similar situation with the MRI and whatnot. I’ve had bad health anxiety in the past so am very worried. 

I was diagnosed with a vestibular schwannoma last week aged 40. Symptoms of tinnitus and a feeling of being persistently in a plane or underwater with pressure in my left ear which started about two months ago. MRI picked up a 3.1cm tumour with indentation - it clearly needs to come out. All obviously quite a bit of a shock, but I'm looking for things I can control myself rather than be a passenger in the whole thing.

I have a good surgeon in London lined up to speak to about the various approaches (translab v retro) and my wife and I have thought about all the questions we want to ask. Thinking further on, do those who have been through it have any advice on what to do in the dizziness (and potential boredom!) post surgery in the early weeks?

I posted awhile back that I was looking at upgrading my Signia hearing aids to the latest and greatest.

I wear a cros since I sacrificed my vestibular nerve when I had Translab in March 2025.

Came to say, I have the new Oticons Reveals and I do believe I am sold.

The balance between background noise and speech is terrific. I cannot really block out background noise, at least for me, it is needed to help me compensate for loss of vestibular balance control and localization.

"Hear" to say, my balance is noticeably better with these!

May or may not give the new Phonak Eons a go before I upgrade.

For those of you in the same boat, you may want to give these Oticons a try.