Author Topic: Asking about tinnitus experiences with other AN/schwannoma sufferers.  (Read 7021 times)

anothereveryman

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I wanted to know how many people here in the "wait and see" period of their ANs and schwannomas experience tinnitus, and if so, if theirs fluctuates or remains constant, and how loud/distracting it is.

Mine is very loud at times (such as right now as I right this), with a frightening rumbling background pulse accompanying a shrieking ringing sound. At times it seems to "go down" a little but the fact that it comes and goes and changes pitches, all in an ear that the hearing specialist said was effectively dead, frightens me.

I just wanted to know if I was alone here. Please share your tinnitus experiences.

CHD63

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Unfortunately, tinnitus as you are describing it pretty much goes with the territory of having an AN ..... at least for many of us, but not all.

I did not have tinnitus until after my first surgery.  After my second surgery my AN ear is totally dead, but I have the same clanging cymbals and shrieks that you describe ..... when I focus on it, which obviously I try not to do.  Drinking caffeine, too little sleep, and/or elevated stress always makes mine worse.

I sleep with my good ear down, using under pillow speakers to play the sound of a babbling brook and that is a big help to give my brain something calming to focus on while trying to go to sleep.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Echo

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I'm pretreatment and yes, I have tinnitus.  Mine is thankfully not super loud and for the most part I can ignore it.  I agree with Clarice though, I definitely notice an increase in it's level when I drink to much caffeine or get over tired.  The caffeine and being over tired also contribute to greater balance issues, so if I take care of myself, limit caffeine (especially on weekends) and get rest, my symptoms improve.   

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

phantagrae

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I was recently diagnosed (just this past April) and I'm waiting to hear about treatment (I'm hoping to do some kind of radiation out in AZ at the Barrow Institute.)

As a musician I've been very fortunate not to have had any tinnitus and my hearing is essentially unaffected.  My only real symptom has been numbness in my face, starting in my mouth and finally spreading up the right side of my face.

My AN is about 1.6 x 2 cm and is "primarily extra canilicular".

Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

anothereveryman

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Thank you for the responses. I have noticed in the last few days a twitch in my right eyelid, and wonder if its just irritation/anxiety or if it might be related to the schwannoma (which is on the left side). I really don't know.

anothereveryman

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I was recently diagnosed (just this past April) and I'm waiting to hear about treatment (I'm hoping to do some kind of radiation out in AZ at the Barrow Institute.)

As a musician I've been very fortunate not to have had any tinnitus and my hearing is essentially unaffected.  My only real symptom has been numbness in my face, starting in my mouth and finally spreading up the right side of my face.

My AN is about 1.6 x 2 cm and is "primarily extra canilicular".

Is your numbness on the same side as your AN?

phantagrae

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I was recently diagnosed (just this past April) and I'm waiting to hear about treatment (I'm hoping to do some kind of radiation out in AZ at the Barrow Institute.)

As a musician I've been very fortunate not to have had any tinnitus and my hearing is essentially unaffected.  My only real symptom has been numbness in my face, starting in my mouth and finally spreading up the right side of my face.

My AN is about 1.6 x 2 cm and is "primarily extra canilicular".

Is your numbness on the same side as your AN?

Yes, same side.
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

anothereveryman

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Thank you for the responses and insights and experience. It means so very much to me, all of you.

I wish I understood why sometimes the tinnitus is almost unnoticable and why sometimes it is world-haltingly distracting, loud, and frightening. It's hard not to envision a growing tumor just from the loudness, like a constant warning siren saying "Do something Do something!".

Yet I was told to simply wait, and to get an MRI in a little while. Having something like that sitting in your skull is uniquely frightening.

mesafinn

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Hi Everyman--

I have two types of tinnitus.  The first is daily pulsatile tinnitus, whereby I can hear my heartbeat in my AN ear.  This has been the case daily for almost eight months now.  I try to ignore it, but it's easier sometimes than others.  Stress, caffeine, and alcohol increase it.

The other is the "ringing" tinnitus--also in my AN ear.  High pitches, some days louder than others.  I have tried to decipher the rhyme and reason to it...some days I have it, most days I do not.  But when it's there, it's very noticeable.  I usually notice it in the AM and PM but not mid-afternoon.  That may speak to other distractions, but I can't figure out my triggers for the "regular" (as opposed to pulsatile) tinnitus.  White noise helps.   I've looked at various sound machines/noisemakers, but lately have just been using a fan on low speed.  It minimizes both forms of tinnitus.

I've had several doc consults, and I've asked each one about it.  They indicate tinnitus is caused by brain stimulation (the brain is asking what's going on over there in the AN ear--so it responds with tinnitus as a stimulus trigger).  Unfortunately, most indicate this could be a life-long reality and is present both pre and post treatment.

Patience and learning to "ignore" seem to be the best medicine, but if you search this website you'll find some other suggested "remedies."  All the best...

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

proudmomof3

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I have had tinnitus for about 3 years. That is what made the dr suspect an AN. I had GK surgery, and it did not stop the tinnitus. I have it 24/7. It NEVER goes away. I have actually gotten used to it. The dr states there is no way to stop it. Since the nerve in my ear/brain is dead, the brain makes its 'own" noises to compensate (whatever that means, its what the brain surgeon told me).

I hope yours will go away. Just sharing my experience. I have learned to live with it. It is deafening at times. I always have a radio, tv, or fan going to help drown out the noise or at least help me pay attention to something else other than the constant shrieking going on in my ear.

Good Luck
Right AN - 1.5cm
Diagnosed 3/2011
GK  4/2011
Last MRI 5/13 - 1.5cm
SSD Right Side, Constant Tinnitus, Vertigo, Headaches

anothereveryman

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Hi Everyman--

I have two types of tinnitus.  The first is daily pulsatile tinnitus, whereby I can hear my heartbeat in my AN ear.  This has been the case daily for almost eight months now.  I try to ignore it, but it's easier sometimes than others.  Stress, caffeine, and alcohol increase it.

The other is the "ringing" tinnitus--also in my AN ear.  High pitches, some days louder than others.  I have tried to decipher the rhyme and reason to it...some days I have it, most days I do not.  But when it's there, it's very noticeable.  I usually notice it in the AM and PM but not mid-afternoon.  That may speak to other distractions, but I can't figure out my triggers for the "regular" (as opposed to pulsatile) tinnitus.  White noise helps.   I've looked at various sound machines/noisemakers, but lately have just been using a fan on low speed.  It minimizes both forms of tinnitus.

I've had several doc consults, and I've asked each one about it.  They indicate tinnitus is caused by brain stimulation (the brain is asking what's going on over there in the AN ear--so it responds with tinnitus as a stimulus trigger).  Unfortunately, most indicate this could be a life-long reality and is present both pre and post treatment.

Patience and learning to "ignore" seem to be the best medicine, but if you search this website you'll find some other suggested "remedies."  All the best...

P.

I've noticed the "pulsating" tinnitus, too. Yet because I have nothing I can really call hearing left in that ear (verified by the audiologist), it can be frightening to "hear" it. Arguably it's worse to me than the ringing that happens other times. It feels like a constant reminder of "you have a tumor in there. Are you doing enough about it? What if it gets bigger?"

I find myself doing facial muscle exercises just to check and re-check that I haven't pinched any additional nerves. It's not healthy but its becoming an obsessive habit. :(

anothereveryman

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Do any of you suffering tinnitus also experience a "vibrating" sensation? I feel like I can FEEL as well as "hear" the pulsing hum in my ear. It may be an illusion, but it is very frightening. I hope someone who is doing well otherwise chimes in. It's hard not to feel like something is very wrong.

alabamajane

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It is very aggravating to say the least , I know as I have had it now pre and post translab surgery since 2008,, I have no ability to hear in AN side due to surgery and it is more noticable now than when I had hearing on that side ,, so it is not necessarily a sign of worsening effects of the tumor. As others have said,, it is something we must get used to.. Many people without ANs have tinnitus to verying degrees too.. So don't obsess over something you are not likely going to change even with treatment ,  I would suggest continuing your research so that next MRI you may be closer to knowing how you want to proceed should you be advised to then , just my opinion  , Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

anothereveryman

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It is very aggravating to say the least , I know as I have had it now pre and post translab surgery since 2008,, I have no ability to hear in AN side due to surgery and it is more noticable now than when I had hearing on that side ,, so it is not necessarily a sign of worsening effects of the tumor. As others have said,, it is something we must get used to.. Many people without ANs have tinnitus to verying degrees too.. So don't obsess over something you are not likely going to change even with treatment ,  I would suggest continuing your research so that next MRI you may be closer to knowing how you want to proceed should you be advised to then , just my opinion  , Jane

You might not be aware how comforting this post was. It's not just a way of preparing me for the very real possibility that, were I to have surgery, I might still have the loud, fluctuating tinnitus (still baffles me how it changes so often!), but also that any worsening or change now isn't necessarily a worsening state of the tumor.

I still need to get this thing checked out when I can (and when I can afford it), but it matters very much to know I'm not alone here. Thank you.

Lita

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Re: Asking about tinnitus experiences with other AN/schwannoma sufferers.
« Reply #14 on: June 21, 2013, 08:05:31 pm »
I also have had constant tinnitus for three years now quite loud since diagnosed. It is so loud it interferes with my hearing and interfered with my thinking and conversations.

In Feb. ENT suggested to me a type of vitamin B. When i did a web search I only found B can CAUSE tinnitus. I took it anyway 500 Mg of niacinamide (not any other B) daily for two months. I couldn't believe it but it made volume lower and a lower tone. It did take a little bit longer than two months as Md told me give it a few months. Niacinamide was very hard to find and had to mail order.

Never took any vitamins before so I was very skeptical.  I also take wellbutrin for two years now which helped somewhat.  I started to take fish oil recently. I hope you come to be able to ignore the tinnitus as many cant.  I couldn't get used to it. Now it is tolerable.

Some of the suggestions on this site may help and even try niacinamide although I can only report of success with me; one person.