TINNITUS!!!!!!!!!!!! ARGHHHH!!!!!!!!!!!!!!

[Monie]

Hi again, beautiful people 
Just wondering how you guys are faring with tinnitus (if you indeed suffer from this wretched complaint)? I began percieving tinnitus a few weeks before my diagnosis (Nov 06) and have found that my hearing is rapidly diminishing and the tinnitus (with equal rapidity) is getting louder. I consider myself a 'strong' person and generally can suffer through the day without it getting me down too much anymore but sometimes it honestly DRIVES ME CRAZY and makes me very depressed.
Does anyone have any ideas for management of this gross intrusion...I have heard of cognitive therapy and tinnitus retraining therapy but really know nothing about these activities - if you have any info at all it would be much appreciated  I am currently waiting and watching until my next MRI in April - Sydney, St Vincent's Hospital, Australia.

[Joef]

I would most of us have "T" (not everyone but most) .. I've had it for years... I just learn to cope with it ..

[Obita]

I am lucky.  The tinnitus does not keep me awake at night.  If it did, I would try a tinnitus masker.

I am so used to it, it does not bother me anymore unless I am in a extremely noisy place.  Then it roars. 

It rarely gets better, and will usually not go away either.  Mine is different than before surgery.  Before it was a million different noises/tones......now it is one constant eeeeeeeeeeeeeeeeeeeeeeee but not loud enough to interfere with daily life.

[BevM]

I have found that distraction is the only way to cope although I am exploring treatment possibilities with my health care provider, Kaiser Permanente.  They do have a group of Doctors and audioligists that specifically evaluate T and try to prescribe a course of treatment.

I have been dealing with this in my "good ear" for about 5 years and since my AN was discovered about a year ago it has increased in the good ear and now is also in the AN ear. It is severly affecting my hearing.  If I get any information worth sharing from my Treatment team I will pass it on.

Bev

[Battyp]

I have it in both ears since my surgery.  I just read an article last night that taking melatonin daily can help with the tinnitus.  Melatonin is a sleep aid drug that pilots can take while flying.  I'm assuming it helps because it helps you sleep?  Anyone tried it?  I plan to only my melatonin bottle was empty last night  LOL

Bev I'm curious to hear what you find out please share!

Monie...you mentioned your hearing is diminshing and your T is getting louder but your still months away from re eval.  I had the same thing happen to me and by the time my re eval hit I lost my hearing in my an ear.  Had the doc not have put off the mri and treatment I might have been able to retain some hearing.  If I was in your shoes I'd not wait until April but start making calls now.  If I knew then what I know now 

[Lorenzo]

HI Monie,
If your tinnitus is getting louder and your hearing is diminishing, I would push for an MRI sooner. Just to be on the safe side.

My tinnitus fortunately is of the rustling leaves kind, so not too intrusive. Loud enough of course to drive me nuts, but I got used to it now and don;t notice anymore, I had it for years, probably six years. You could look at the website fo the American Tinnitus Association, I think it's www.ata.org , they have good information on various coping methods. One I use is a CD with rain / shower noise, listen to it just above the level of the tinnitus and that masks it.

Unfortunately there aren't many things one can do about tinnitus other than training one's brain to not hear it. It gets better with time usually, depending ont he type of tinnitus you have. Some are easier to overcome than others.

Hope you'll find some solution that works for you, Monie.

Ciao, Lorenzo

[ntouras]

I've had tinnitus for about 10 years?? (left ear) but always attributed it to loud music (big AC/DC, Stones fan...). Starting out a small buzzing noise. It got to a point where hearing in left ear diminished where I could not hear a phone conversation using that side (recent testing showed I had appr 60% hearing loss in left ear). Wasn't until July '06 that I had a string of bad headaches which also made the tinnitus worse. Suffered paralysis on RIGHT side of my face while coming home from work. Thinking I was having a stroke, I went straight to the emergency room. A CT scan showed no signs of a stroke but was diagnosed as having Bell's Palsey, which paralysed the right side of my face. It also revealed a mass on the left side that was totally unrelated. An MRI confirmed an AN. That explained the tinnitus.. The Bell's Palsey eventually healed up for the most par... Dec 5 '06 went to the Mayo Clinic, had surgery, doing OK... They cut the hearing nerve but the tinnitus has actually gotten worse... It will eventually go away I was told in a couple of years... and to be honest I've gotten so used to it that it doesn't bother me, but i do avoid very loud noises (no more blasting the radio in the car). That actually flares it up and makes it very uncomfortable...

It took tinnitus, a rash of severe headaches, and Bell's Palsey to get me to have an MRI to find out I've had a 2.8 cm AN for they say I've had as long as when the tinnitus began... I was very lucky...I see tinnitus as a sign from the body to warn you that something is amiss... I'm dealing with it in a positive way so I don't let it bother me...

[Obita]

Hi ntouras and welcome to the forum........

I ignored the tinnitus too.  My mom always told me I would hurt my ears listening to music as loud as I did.  I just figured that she was right, I wrecked my ear. 

Good to have you on and very good to hear you are doing well post-op.

Do you live in Minnesota?

Kathy

[nancyann]

Hi there:

Yup, had tinnitus for years before having it checked out, my mistake !!
Still have it post op, some days/hours are louder than others.

Like most everyone, you get use to it.

Best wishes, Nancy

[ntouras]

Hi all,

A newbie posting messages though I have read a lot of posts over the last 5 months... gathering info...

Did a lot of research on AN and realizing tinnitus was a major clue that something was wrong yet I never put two and two together until things came to a head.

I'm from the Chicago area and went to 4 differant specialists to get opinions (all in the Chicagoland area). Odd thing is I got 4 differant opinions from do nothing to GK to surgery to Gk and then surgery. It drove my family and I completely crazy.

We opted for Mayo Clinic as our 5th and final opinion, with Dr Link and Dr Driscoll doing the surgery. The whole time there was the best, not only for me but they took great care of my family which was more important to me... Highly recommended...

All the specialists agreed that the hearing would be lost either going the GK or surgical route...

I like to think of the continuing tinnitus as not an annoying thing but as just a reminder of how lucky I was...

[ppearl214]

Hi all,

A newbie posting messages though I have read a lot of posts over the last 5 months... gathering info...

Did a lot of research on AN and realizing tinnitus was a major clue that something was wrong yet I never put two and two together until things came to a head.

I'm from the Chicago area and went to 4 differant specialists to get opinions (all in the Chicagoland area). Odd thing is I got 4 differant opinions from do nothing to GK to surgery to Gk and then surgery. It drove my family and I completely crazy.

We opted for Mayo Clinic as our 5th and final opinion, with Dr Link and Dr Driscoll doing the surgery. The whole time there was the best, not only for me but they took great care of my family which was more important to me... Highly recommended...

All the specialists agreed that the hearing would be lost either going the GK or surgical route...

I like to think of the continuing tinnitus as not an annoying thing but as just a reminder of how lucky I was...

thank you for sharing this and thrilled you are doing well. I know the tinnitus can be brutal to handle (physically and emotionally). I'm looking forward to attending the ANA Symposium in Philly this year as a major topic of discussion will be on Tinnitus.

I, do however, have to ask... in what I did in italic/bold in your post, I would like to know how the specialist agreed that hearing would be lost by GK or surgical. What type of "specialist" noted this and did they note to you percentages of potential partial or full hearing loss based on which treatments?  I only ask out of curiousity as ..... many of us here try to educate our treating physicians with our gained knowledge, just as they try to educate us.

Thanks.
Phyl

[Mark]

I just wanted to add to Phyl's question about the hearing preservation potential of surgery vs radiosurgery. It's been posted before but I think the it's important to distinguish that the primary difference between the quoted statistics for the two options is size. Both are fairly comparable at the small AN level ( less than 1 cm) but surgery results  diminish as the size increases whereas radiosurgery does not. In other words, disregarding the FSR vs. GK 1 dose discussion for a minute,  Hypothetically, if radiosurgery hearing preservation is 75% at 1 cm , it is essentially that at 2 cm.  On the other hand, surgery may be 75% at 1 cm but drops to maybe 25% ( which is what I was quoted)  at 2 cm.

Not really a tinnitus issue, but reaffirms the need to really challenge Doctor quoted statisitcs on occassion

Mark

[Lorenzo]

One other aspect to remember is the level of hearing present at the time of treatment. If it just boderline useful in terms of voice recognition (like in my case, -70%) then either GK, CK or surgery will not 'help' much. The loss of an extra 5% of my hearing after CK just made it that bit more useless, thus for all intents and purposes I have lost my hearing on my left side.

Lorenzo

[ntouras]

In my case I had less than 40% hearing in my left ear with hearing getting worse over the last couple of years. The specialists who felt GK was the way to go, all felt that hearing would be lost over a couple of years based on the size of tumor and the quality of hearing I currently had and based on their own experience.

In the case of surgery the main concern for me was removing the tumor without damaging the facial nerve. I just wanted it out... The surgeons all felt that the hearing nerve would be gone... My feeling was to save the facial nerve(which they did)... I was content without the hearing... but that's me... You should get all the information you can from any specialist you deal with and ask them bluntly how many people they dealt with lose complete hearing... Again my hearing was going downhill fast so it came as no big shock for me... unfortunatley I still have the tinnitus even though the hearing nerve is gone... That will go away over time or so I was told...

[WHWT]

I had PERFECT hearing in both ears prior to surgery.  My sister used to call me Jamie Somers (the Bionic Woman) because she claimed I heard everything.
During my hearing test, when I was in the little soundproof booth with headphones on, I asked the technician what that ringing sound was.  She said it was her cell phone, in her purse, on the far side of her office.  She said, "I guess you don't have hearing loss."

Now, I'm completely deaf in the left ear, and the tinnitus is sometimes overwhelming.  Especially in loud, busy places.   And I'm bothered by all kinds of sounds, like traffic, fans, refrigeration units in supermarkets, lights buzzing, clocks ticking, household appliances humming.  As many of you have noted, parties and restaurants are often unbearable, too.  And high ceilings seem to make the sounds ricochet.
And the tinnitus......................Can't wait to get into a quiet room which, oddly enough, lessens the tinnitus.