Brain Tumor Tinnitus — Vestibular Schwannoma / Posterior Fossa Meningioma

[Brain Tumor Dave]

I was a military brat living in Japan in the 70s. I had a bleeding ear infection in both ears caused by a phenomenon called "Tokyo Smog Syndrome." They put tubes in both ears and I healed after a while. That was the beginning of (so far) 50 years of tinnitus. A 24/7 constant, high-pitched, screeching tone, and a middle- pitched humming tone in both ears. I can't remember a time without it.

In 2008 I suddenly lost my hearing in my left ear while just sitting at my work desk. It sounded like when water fills the ear canal when swimming, so that's what I thought it was, as I'd been swimming the day before. Along with the deafness came three additional tinnitus tones added to just my left ear. One is like random wind gusts through a whistling window leak. One is like cicadas calling (bugs somewhat like really loud crickets). And the third additional tone is like BBs swirling around in a steel can.

A few trips to a few different doctors later and nobody could determine the cause - prompting an MRI. The 2008 MRI (attached) revealed a 25mm tumor within the bundle of nerves inside my skull just above the big hole (Foramen magnum). They're guessing, because of my symptoms, that I have a Schwannoma, or a Posterior Fossa Meningioma, but they can't be sure because the tumor, now 37mm, is surrounded within that bundle of nerves - they can't determine which one it's growing on.

The 5 differing tinnitus tones aren't my only symptoms, obviously. I suffer daily headaches, some memory loss/cognitive problems, balance issues, etc. But I live with "loud" tinnitus during every second of my life.

 

[Felix6666]

@Brain Tumor Dave I read your post and felt really sorry for your profound level of suffering and for your amazing tenacity in the face of such adversity. It truly humbled me. I will certainly be counting my blessings from now on and wish you the best in your future.

 

[Guywithapug]

I was a military brat living in Japan in the 70s. I had a bleeding ear infection in both ears caused by a phenomenon called "Tokyo Smog Syndrome." They put tubes in both ears and I healed after a while. That was the beginning of (so far) 50 years of tinnitus. A 24/7 constant, high-pitched, screeching tone, and a middle- pitched humming tone in both ears. I can't remember a time without it.

In 2008 I suddenly lost my hearing in my left ear while just sitting at my work desk. It sounded like when water fills the ear canal when swimming, so that's what I thought it was, as I'd been swimming the day before. Along with the deafness came three additional tinnitus tones added to just my left ear. One is like random wind gusts through a whistling window leak. One is like cicadas calling (bugs somewhat like really loud crickets). And the third additional tone is like BBs swirling around in a steel can.

A few trips to a few different doctors later and nobody could determine the cause - prompting an MRI. The 2008 MRI (attached) revealed a 25mm tumor within the bundle of nerves inside my skull just above the big hole (Foramen magnum). They're guessing, because of my symptoms, that I have a Schwannoma, or a Posterior Fossa Meningioma, but they can't be sure because the tumor, now 37mm, is surrounded within that bundle of nerves - they can't determine which one it's growing on.

The 5 differing tinnitus tones aren't my only symptoms, obviously. I suffer daily headaches, some memory loss/cognitive problems, balance issues, etc. But I live with "loud" tinnitus during every second of my life.

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So sorry for your diagnosis, but I am a little confused. They found a tumor at 25mm in 2008 and nothing was done, now it's 37mm? Why was there no intervention in 2008?

Anyway, I am not a medical professional but based upon my journey with an acoustic neuroma, I have learned a lot from my doctors.

Your MRI reveals a tumor with a clear defined border and the characteristic tail leading toward or in the IAC, or so it at least appears.

You have hearing loss, tinnitus and balance issues, everything suggests it's growing on the 8th cranial nerve or vestibular-cochlear nerve. Headaches would be common with larger tumors due to an increase in intra-cranial pressure. I also believe I see brainstem compression.

Tell me you haven't been on the wait and watch approach since 2008? If this is the case and you've had no medical intervention so far it's pretty urgent at this point because it's beyond the treatable range for Gamma Knife.

God speed my friend!

 

[bmxer883]

I had a question for someone who is more educated on tumors. I'm very sorry to here of any one having one.

I'm little concerned for myself so had a few questions.

I have had a CT scan and was told I'm fine. Does that really mean I'm fine or should I get an MRI? I started with tinnitus in left ear 8 months ago and it now seems to be in both ears.

My new problem I have that worries me is I keep getting pressure and twitching in my left temple some times the twitching is in eye but normally at temple.

I keep getting fleeting tinnitus, sometimes I go deaf for a few seconds and other times just the pitch gets really loud then goes back down.

I'm only 26 but have worked in a loud environment so was told that's why my ears ring even though my hearing test came back good.

Any suggestions? Am I just worrying too much?

I hope everything works out for you.