Acoustic Neuroma/Vestibular Schwannoma — Post Your Experience and Get Support

[Guywithapug]

Hello all! I wanted to start this thread specifically for the ongoing support for acoustic neuroma/vestibular schwannoma patients (or anyone who wishes to provide support!)

It will serve as an informative source for sharing stories, symptoms, treatment and long term outcomes for anyone diagnosed with this tumor.

I ask all those who post to please follow the simple format, formatted in bold text to provide easy reading comprehension. I will start with my own story.

Initial Symptoms

Mild tinnitus for around 4-5 months before diagnosis.
Hearing loss at 4, 6 and 8 kHz 1 month before treatment.

Diagnosis Date & Tumor Size

October 2020, 1.7cm x 1.5cm

Reaction to Diagnosis

Shock, fear and anxiety. Did not expect something like this to happen to me, especially in my mid 30's.

Treatment Type, Date and Location

Gamma Knife, January 21st, 2021, Swedish Medical Center Englewood, CO

Recovery

No pain after treatment until the 5-6 hour mark, followed by an intense burning sensation deep within the treated ear. Subsided roughly 2-3 days after treatment.

Post-Treatment Side Effects

Luckily nothing so far, subject to change in the long term.

Current Situation

Awaiting first post-op MRI scheduled 3 months from now, hopefully tumor growth has been arrested an no further action is required.

Managing Ongoing Symptoms

Hearing loss in the affected ear is not difficult for me to live with, the tinnitus however is a different story. It has positively progressed from a harsh pure tone to moderate hiss with reactivity. Some days will be very low tinnitus while others more pronounced. I sometimes wear a hearing aid to mask but wouldn't need it if the hissing continues to subside.

Adjusting to a New Life

It has been the toughest thing I have had to deal with in my entire life but find that as time passes, the easier to becomes to adjusting to my new life. If the radiation was successful at halting tumor growth, and the hissing subsides, I will feel as if I have 90% of my life back and can go about enjoying the rest of it. Obviously it won't be as it was before, but I found the worst thing to do is continually measure your current self to how "things were before." You have to be able to let go and define yourself again, things that make you happy, what you're good at etc. in order to love your life and who you are again.

 

[Dana]

Hi, @Guywithapug!

How did you (they) discover that you have acoustic neuroma, what investigation did you do?

Thanks!
Good luck!

 

[Guywithapug]

How did you (they) discover that you have acoustic neuroma, what investigation did you do?

Hey there, I had very mild tinnitus and unilateral hearing loss, which at the time I didn't realize until I had a hearing test. Then I was presented with an option for getting an MRI to rule out a tumor. Needless to say I opted to get it and found out a couple of weeks later.

Thanks!

 

[Guywithapug]

@gregmech26 and @Brain Tumor Dave, want to help me kick off this thread?

 

[Brain Tumor Dave]

Here's my intro.

Initial Symptoms

I've had tinnitus my whole life (50 years) from bleeding ear infections, both ears, since I was a young kid.

In 2008 I was just sitting at my desk at work and suddenly went (90%+) deaf in my left ear. Like when you get water in your ear canal, or closed off with ear wax. Along with that, I gained 3 more tones of noise and an occasional, non-rhythmic pin prick, stabbing pain in my inner ear accompanied by what sounds like water drops in a full sink. My original tinnitus tones are a constant high screech and a middle humming. The tumor added random wind whistling, many overlapping cicadas calling (YouTube it), and BBs swirling in a metal can, along with that stabbing pain one. My deaf ear ONLY hears tinnitus, so mine can't be masked.

Diagnosis Date & Tumor Size

After FMP, and several ENT who couldn't help, I finally got an MRI in (December?) 2008 (It's on my avatar, anyway).

In 2008 it was 25 mm, the size of a US quarter coin. Grew at the typical 1mm per year, then slowed down growth to .5 mm/per in 2018. My tumor is 37 mm; a now ping pong ball size, growing in my skull.

Reaction to Diagnosis

My wife (at the time) and I were walking into my FMP doctor's office to see my MRI results and I said, "Well, let's see what kind of brain tumor I have." She said, "Oh, stop." Then there it was on x-ray film (my avatar); BAM! F'king brain tumor! My wife immediately started balling. I just asked the doctor what is my life now? And not to sugar-coat or bullshit me; what are we talking about here?

Treatment Type, Date and Location

I'm on "Wait and Watch" because of my rather unique case, rare even among acoustic neuroma cases. From 1 in 100,000 to 1 in 7 million, according to UF Shands - Gainesville. It's not able to be determined what nerve mine is growing on because it rests so low in my skull, tangled among all the others as they exit my Foramen magnum. Could be a Posterior Fossa Meningioma on a nerve other than right-side #8 (with a deaf, LEFT ear). I remember the doctor jamming the x-ray film up into the light board and saying, "Wait, that's not right." and flipping it over. Then the text was backwards. And he asked, "Wait, you said it's your LEFT ear that's deaf?" What this tumor HAS done, however, is compressed my brain stem and pinched off my left ear nerve simply due to the size/location of growth. It's causing numbness in areas. Also squeezing my 3rd and 4th CSF ventricles, and causing hypothalamus problems. I can tell exactly when the barometric air pressure drops below 30 bars, so I know when a storm is coming. It's difficult to describe the magnitude of daily headache this produces. I can't regulate my body temperature; I randomly sweat or fever when it's cold. Or shivering in 90 deg. heat. I lose chunks of memory like tearing pages out of a book. My ex-wife said she could tell when it was happening because I would "zone-out." She knew whatever we did for the next few hours I wouldn't remember the next day. Sometimes I can't remember simple words like "keyboard" or "mouse" or "dog" while staring right at them. My last name is Downey. The other day I couldn't remember how to spell it. Doweny or Downey, "I dunno; they both sound the same." I've had this name for a half a century.

Retrosigmoid craniotomy (subobccipital) is my best bet. Translabyrinthine would 100% kill my only good ear. My tumor is too big and tangled-up in other stuff for Gamma Knife.

Adjusting to a New Life

I bought my Powered Paraglider in 2008 right after my diagnosis. Did some skydiving. Shark diving. Cave diving. Speed boat racing. And I just bought a WaveRunner that goes 0-70 mph in about 5 seconds. I'm not going to die from some f'king thing growing in my head.

 

[Guywithapug]

Here's my intro.

Initial Symptoms

I've had tinnitus my whole life (50 years) from bleeding ear infections, both ears, since I was a young kid.

In 2008 I was just sitting at my desk at work and suddenly went (90%+) deaf in my left ear. Like when you get water in your ear canal, or closed off with ear wax. Along with that, I gained 3 more tones of noise and an occasional, non-rhythmic pin prick, stabbing pain in my inner ear accompanied by what sounds like water drops in a full sink. My original tinnitus tones are a constant high screech and a middle humming. The tumor added random wind whistling, many overlapping cicadas calling (YouTube it), and BBs swirling in a metal can, along with that stabbing pain one. My deaf ear ONLY hears tinnitus, so mine can't be masked.

Diagnosis Date & Tumor Size

After FMP, and several ENT who couldn't help, I finally got an MRI in (December?) 2008 (It's on my avatar, anyway).

In 2008 it was 25 mm, the size of a US quarter coin. Grew at the typical 1mm per year, then slowed down growth to .5 mm/per in 2018. My tumor is 37 mm; a now ping pong ball size, growing in my skull.

Reaction to Diagnosis

My wife (at the time) and I were walking into my FMP doctor's office to see my MRI results and I said, "Well, let's see what kind of brain tumor I have." She said, "Oh, stop." Then there it was on x-ray film (my avatar); BAM! F'king brain tumor! My wife immediately started balling. I just asked the doctor what is my life now? And not to sugar-coat or bullshit me; what are we talking about here?

Treatment Type, Date and Location

I'm on "Wait and Watch" because of my rather unique case, rare even among acoustic neuroma cases. From 1 in 100,000 to 1 in 7 million, according to UF Shands - Gainesville. It's not able to be determined what nerve mine is growing on because it rests so low in my skull, tangled among all the others as they exit my Foramen magnum. Could be a Posterior Fossa Meningioma on a nerve other than right-side #8 (with a deaf, LEFT ear). I remember the doctor jamming the x-ray film up into the light board and saying, "Wait, that's not right." and flipping it over. Then the text was backwards. And he asked, "Wait, you said it's your LEFT ear that's deaf?" What this tumor HAS done, however, is compressed my brain stem and pinched off my left ear nerve simply due to the size/location of growth. It's causing numbness in areas. Also squeezing my 3rd and 4th CSF ventricles, and causing hypothalamus problems. I can tell exactly when the barometric air pressure drops below 30 bars, so I know when a storm is coming. It's difficult to describe the magnitude of daily headache this produces. I can't regulate my body temperature; I randomly sweat or fever when it's cold. Or shivering in 90 deg. heat. I lose chunks of memory like tearing pages out of a book. My ex-wife said she could tell when it was happening because I would "zone-out." She knew whatever we did for the next few hours I wouldn't remember the next day. Sometimes I can't remember simple words like "keyboard" or "mouse" or "dog" while staring right at them. My last name is Downey. The other day I couldn't remember how to spell it. Doweny or Downey, "I dunno; they both sound the same." I've had this name for a half a century.

Retrosigmoid craniotomy (subobccipital) is my best bet. Translabyrinthine would 100% kill my only good ear. My tumor is too big and tangled-up in other stuff for Gamma Knife.

Adjusting to a New Life

I bought my Powered Paraglider in 2008 right after my diagnosis. Did some skydiving. Shark diving. Cave diving. Speed boat racing. And I just bought a WaveRunner that goes 0-70 mph in about 5 seconds. I'm not going to die from some f'king thing growing in my head.

So sorry for your current situation. You're an absolute warrior my friend and I certainly don't blame you for wanting to experience thrills and living life to its fullest at this point!

You're correct that's this tumor is rare but even more so in your case, given the circumstances you stated. The thing that frustrates the hell outta me is back in 2016 I was seen by my first ENT for my TMJ issues, we did a hearing test as I had not had one in a very long time. It turned out I had very mild unilateral hearing loss then and he said I could go for an MRI. So I did. I was told everything is normal and carried on my life until 4 years later when I was talking to a neurologist about some nerve pain and just happened to mention the story. The first thing she asked me is whether I had contrast with the MRI and I said no. Well she was concerned enough to order another MRI with contrast and 3 weeks later I found out.

Long story but I always wonder how things may have been different if they could have found it much sooner if only the ENT did his job properly.

Stay strong and I appreciate you sharing your story!

 

[Jack Straw]

Hey @Guywithapug. I had quick question for you regarding your acoustic neuroma.

When you woke up with hearing loss how long did it take to bounce back and by how much? Did you ever experience anything like that before then?

My doctor has been asking me to get an MRI to rule out acoustic neuroma because I sometimes get weird episodes of fleeting tinnitus. When it happens my hearing drops out of a specific ear and my tinnitus gets loud for a few sounds to a few hours. It seems that people who experience it lasting hours is more rare. He brought it up again at my last visit and I wonder if he is being overly cautious or if it is worth doing.

 

[Guywithapug]

Hey @Jack Straw, I can tell you that one of my early warning signs that I should have paid more attention to before diagnosis was that I would get tinnitus in the affected ear, which would resolve itself after a day or two. This happened for almost a year prior to diagnosis and would only occur at most once a month or every six weeks.

Hearing loss never bothered me as much as the tinnitus, but would say that after a couple of months got used to the way I heard things.

Although the probability of having a tumor is low, getting an MRI is warranted in my opinion to rule out something potentially lethal in the long run if undetected. Also, the sooner the treatment, the better the outcome could be. Hope that helps!

 

[Jack Straw]

Hey @Jack Straw, I can tell you that one of my early warning signs that I should have paid more attention to before diagnosis was that I would get tinnitus in the affected ear, which would resolve itself after a day or two. This happened for almost a year prior to diagnosis and would only occur at most once a month or every six weeks.

Hearing loss never bothered me as much as the tinnitus, but would say that after a couple of months got used to the way I heard things.

Although the probability of having a tumor is low, getting an MRI is warranted in my opinion to rule out something potentially lethal in the long run if undetected. Also, the sooner the treatment, the better the outcome could be. Hope that helps!

The tinnitus you would get, was it "fleeting tinnitus" like people describe here? This is when it gets super loud and your hearing drops out for a little. Or was it just regular tinnitus with no intense level change or hearing change?

 

[Guywithapug]

The tinnitus you would get, was it "fleeting tinnitus" like people describe here? This is when it gets super loud and your hearing drops out for a little. Or was it just regular tinnitus with no intense level change or hearing change?

It certainly was loud the first day and would diminish over the next day, the hearing would appear to drop out somewhat yes.

 

[Jack Straw]

It certainly was loud the first day and would diminish over the next day, the hearing would appear to drop out somewhat yes.

Interesting!

How have you been doing? I read up on your story and am fascinated about the procedure you had.

Did you have tinnitus in just one ear or both?

 

[Guywithapug]

Interesting!

How have you been doing? I read up on your story and am fascinated about the procedure you had.

Did you have tinnitus in just one ear or both?

I have been doing well thanks, I have just learned to somewhat ignore my tinnitus and go about my life. I am great for radiosurgery, it's a great option to consider and is non-invasive unlike traditional surgery. It is a waiting game though, to see how things turn out in the long term. I had my 6 month MRI and all looks to be on track.

Have you decided on whether you're going to get an MRI?

 

[Jack Straw]

I have been doing well thanks, I have just learned to somewhat ignore my tinnitus and go about my life. I am great for radiosurgery, it's a great option to consider and is non-invasive unlike traditional surgery. It is a waiting game though, to see how things turn out in the long term. I had my 6 month MRI and all looks to be on track.

Have you decided on whether you're going to get an MRI?

I am going to discuss with my doctor because I feel he may be overly cautious and if chance is like 1/1000 I don't think its worth the risk of worsened tinnitus. Might start with a CT and if anything shows up at all I'll do an MRI for sure.

 

[Forever hopeful]

Hey @Guywithapug. I had quick question for you regarding your acoustic neuroma.

When you woke up with hearing loss how long did it take to bounce back and by how much? Did you ever experience anything like that before then?

My doctor has been asking me to get an MRI to rule out acoustic neuroma because I sometimes get weird episodes of fleeting tinnitus. When it happens my hearing drops out of a specific ear and my tinnitus gets loud for a few sounds to a few hours. It seems that people who experience it lasting hours is more rare. He brought it up again at my last visit and I wonder if he is being overly cautious or if it is worth doing.

Interesting. My ENT and Otologist said fleeting tinnitus is normal and that many people, even those w/o hearing loss or tinnitus experience it. Although they were definitely referencing the very brief 1 to 2 minute episodes, not ones lasting several hours. Although it's not well understood, it is often felt to be a muscle spasm or some other strange phenomena but I've never heard it referenced in conjunction with a suspected acoustic neuroma. That is very interesting.

 

[Guywithapug]

Interesting. My ENT and Otologist said fleeting tinnitus is normal and that many people, even those w/o hearing loss or tinnitus experience it. Although they were definitely referencing the very brief 1 to 2 minute episodes, not ones lasting several hours. Although it's not well understood, it is often felt to be a muscle spasm or some other strange phenomena but I've never heard it referenced in conjunction with a suspected acoustic neuroma. That is very interesting.

Fleeting tinnitus is normal for some without any apparent hearing condition, which is exactly why I didn't immediately run to get an MRI. I believe anytime there is damage or abnormalities to the auditory system is when you will encounter tinnitus, whether it be episodic or chronic. Take my opinion with a grain of salt though as I am no medical professional

 

[Guywithapug]

@Brain Tumor Dave how have you been doing lately friend?

 

[Wrfortiscue]

I am going to discuss with my doctor because I feel he may be overly cautious and if chance is like 1/1000 I don't think its worth the risk of worsened tinnitus. Might start with a CT and if anything shows up at all I'll do an MRI for sure.

That's what I wanted to do but my ENT said the CT csn miss things... I'm like ok...

 

[Guywithapug]

That's what I wanted to do but my ENT said the CT csn miss things... I'm like ok...

They sure do, MRI with contrast is the only way to go.

 

[Jack Straw]

That's what I wanted to do but my ENT said the CT csn miss things... I'm like ok...

Haha exactly! Let's try and see if anything is there before I risk making my tinnitus worse lol.

 

[Wrfortiscue]

Haha exactly! Let's try and see if anything is there before I risk making my tinnitus worse lol.

Yeah I had to call around to ask for a lower decibel one and to allow my own earmuffs. 1.5T MRI scheduled.

 

[Watasha]

Yeah I had to call around to ask for a lower decibel one and to allow my own earmuffs. 1.5T MRI scheduled.

How did that go?

 

[Watasha]

Haha exactly! Let's try and see if anything is there before I risk making my tinnitus worse lol.

Did you go with the CT Scan (with contrast)? I get the same fleeting tinnitus where the hearing drops out and it's loud but it only sticks around for 10-30 seconds.

I feel like the volume and intensity have slowly been creeping up since onset four years ago and am thinking not getting an MRI may be a barrier to habituation (I was around stage 3 habituated for about 2.5 years until recently).