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Ann:

I also had it worst when I was most infected with Lyme and

Babesoisis and Erlicheosis(sorry of the strange spelling here!!) which has

slowly become less and less over time (first with abx and then with ND

protocol) I have some hearing loss in one ear, but this may or may not be

related to the Lyme (as I am 64 years old and this may be a " natural "

occupancies)[what? am I admitting that I am ageing??] It is much better

now and only comes on when I am having a day of more active Lyme or this is

the result of left over damage from about 6 years of dealing with this

impossible and very mysterious disease (which I have many questions about

as most of us do - from diagnosis to treatment to insurance to drugs to the

possible role of man-made processes in all of this!!)

Glen Wolfsen

New Jersey

At 11:17 AM 4/10/2005 -0700, you wrote:

>Ann

>I have had the ringing since I was a teenager (45 now) I am used to

>it, don't think it will ever go away. It doesn't affect hearing others

>though. I read some where the Shatner has tinnitus and got a

>special hearing aid with " white noise " that helped with his

>misery. Don't know what the device was called.

>

>

>Ann Prow <aprow@...> wrote:

>

>

>

>With all the talk about hearing loss, I was wondering if anyone has had any

>success in getting rid of tinnitus - ringing in my ears. I have had this

>problem with long term undiagnosed Lyme and even with treatment the last 3

>years, it only has gotten worse -louder. It is now affecting my hearing

>cause I just cannot hear things people are saying.

>Thank you again for your help -however you can,

>Ann

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Ann,

I have ringing in the ears also, ever since I've had the Lyme symptoms, and

that's been over 15 years. I was diagnosed with " late stage borreliosis "

less than a year ago. I have a digestion problem that may be worse than some

other peoples, but I think I have a really serious yeast/candida problem in

my GI tract. I can monitor the activity of the infection in my gut by the

loudness of the tinnitus.

In my quest to learn more about health, I checked out an old audio book from

the local library called " Miracle Cures " by Carper. One of the things

she talks about is Gingko Biloba as being helpful for memory but she also

mentions it helping tinnitus. GB thins the blood, so they say that you

shouldn't take it within a few weeks of a planned surgery or if you are

already on blood thinners. I've not taken it long enough to know if it helps

with the tinnitus, but that is something else you might consider.

Jan

[ ] Tinnitus

Theresa,

I had a consultation for the " hearing aid " for white noise - it actually

trains your brain to not hear the tinnitus. I actually have that on the back

burner and it is still a possibility but it costs $5,000 that I do not have

and Medicare doesn't pay for any of it.

Didn't know Shatner has used it - did the article say how well it

worked for him - I was told that it worked " for most people " and really

wondered if it worked for Lyme patients.

I've had this since 1983 and it has just gotten progressively louder until

now when it's like being in a tin can with a loud noise surrounding me all

the time. I'm glad I'm feeling better in other ways or this would be worse.

Thank you for the information,

Ann

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In my own case, I have correlated the tinnitus to my digestion, and probably

to leaky gut. My problem might even be in my stomach or duodenum, because

the ringing gets much louder soon after eating. If I fast all day long on a

weekend, the volume reduces to almost nothing.

Has anyone else had tinnitus symptoms similar to mine?

Jan

Re: [ ] Tinnitus

Ann:

I also had it worst when I was most infected with Lyme and

Babesoisis and Erlicheosis(sorry of the strange spelling here!!) which has

slowly become less and less over time (first with abx and then with ND

protocol) I have some hearing loss in one ear, but this may or may not be

related to the Lyme (as I am 64 years old and this may be a " natural "

occupancies)[what? am I admitting that I am ageing??] It is much better

now and only comes on when I am having a day of more active Lyme or this is

the result of left over damage from about 6 years of dealing with this

impossible and very mysterious disease (which I have many questions about

as most of us do - from diagnosis to treatment to insurance to drugs to the

possible role of man-made processes in all of this!!)

Glen Wolfsen

New Jersey

At 11:17 AM 4/10/2005 -0700, you wrote:

>Ann

>I have had the ringing since I was a teenager (45 now) I am used to

>it, don't think it will ever go away. It doesn't affect hearing

>others

>though. I read some where the Shatner has tinnitus and got a

>special hearing aid with " white noise " that helped with his

>misery. Don't know what the device was called.

>

>

>Ann Prow <aprow@...> wrote:

>

>

>

>With all the talk about hearing loss, I was wondering if anyone has had

>any success in getting rid of tinnitus - ringing in my ears. I have had

>this problem with long term undiagnosed Lyme and even with treatment

>the last 3 years, it only has gotten worse -louder. It is now affecting

>my hearing cause I just cannot hear things people are saying. Thank you

>again for your help -however you can, Ann

Questions and/or comments can be directed to the list owner at

-Owner

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Guest guest

Perhaps this is why my husbands tinnitus has stopped becasue his stomach

problems are gone. We never made the connection.

BUNTYN, JAN F. (JSC-DA9) (NASA) wrote:

>

> In my own case, I have correlated the tinnitus to my digestion, and probably

> to leaky gut. My problem might even be in my stomach or duodenum, because

> the ringing gets much louder soon after eating. If I fast all day long on a

> weekend, the volume reduces to almost nothing.

> Has anyone else had tinnitus symptoms similar to mine?

> Jan

>

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Guest guest

I didn't have tinnitus specifically related to digestion ( that I correlated

anyway) but I did notice a definite relation to panic attacks/anxiety. In fact

after I noticed this connection I was able to talk myself out of the panic

attack. Evidently our stomach and the nerves around there are connected to alot

more than we realize

Margie

" BUNTYN, JAN F. (JSC-DA9) (NASA) " <jan.f.buntyn@...> wrote:

In my own case, I have correlated the tinnitus to my digestion, and probably

to leaky gut. My problem might even be in my stomach or duodenum, because

the ringing gets much louder soon after eating. If I fast all day long on a

weekend, the volume reduces to almost nothing.

Has anyone else had tinnitus symptoms similar to mine?

Jan

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Guest guest

RE:

She sells Ambrotose and other mannatech procucts. I have been taking the

Ambrotose since Jan. I can't say if it is really helping but will continue to

take it. After having lyme/co-infections for 30+ yrs , I am willing to try

anything.

Anyway, I know a cheaper source for it, if you are interested. jumped on

me in the group re: this, so if you want to build a team can help you (and

her) If you want the cheaper contact let me know.

Take care

Ann Prow <aprow@...> wrote:

Theresa,

I had a consultation for the " hearing aid " for white noise - it actually

trains your brain to not hear the tinnitus. I actually have that on the back

burner and it is still a possibility but it costs $5,000 that I do not have

and Medicare doesn't pay for any of it.

Didn't know Shatner has used it - did the article say how well it

worked for him - I was told that it worked " for most people " and really

wondered if it worked for Lyme patients.

I've had this since 1983 and it has just gotten progressively louder until

now when it's like being in a tin can with a loud noise surrounding me all

the time. I'm glad I'm feeling better in other ways or this would be worse.

Thank you for the information,

Ann

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  • 2 months later...
Guest guest

Are you talking about tinnitus in your implanted ear or the other, or both?

I had tinnitus like that after my surgery and it got better with time. My

CI masks tinnitus, but I still have it in the other ear.

I have good days and bad and occasionally at night when I roll over suddenly

and do not have my speech processor on, the loud tinnitus comes back. It

goes away in a few minutes and I go back to sleep. You learn to live with

that.

Check with your doctor and see what he says.

Does anyone know what causes tinnitus?

--

In a message dated 6/13/2005 2:23:21 PM Mountain Standard Time,

ec_nunez@... writes:

Ever since I lost my hearing suddenly 8 years ago I have had tinnitus. I

thought it could get no worse. June 1st was my surgery. On June 10 I woke up at

3 in the morning with the sound of a frieght train in my implanted ear which

included the sound of the train whistle to get out of the way. It was very

scary. Since then I have had 7 such episodes. When it passes the ear seems to

be peaceful but I now live in fear of an episode. My activation date is July

5. I am anxious.

I use to be able to mask it but can't anymore because that ear now has no

hearing.

Implanted December 1988, Activated January 1989

Legally blind most of my life

Totally deaf for part of my life

Nan Rosen

_www.rosetwig.com_ (http://www.rosetwig.com/)

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Guest guest

I ahve tinnitus as well and have had it for as long as I can remember. I

also had those train episodes for about 6 weeks after my surgery. It seem sot me

that these episodes are simply an after effect from the head surgery while the

cure of the " regular " tinnitus is generally not known.

In a message dated 6/13/2005 6:14:41 PM Eastern Standard Time,

ec_nunez@... writes:

I have tinnitus in both ears and all over my head (different pitches.) At one

time it contolled my life. I did learn to live with it. I had my implant on

my Right ear. When I awoke in the recovery room the tinnitus seemed the

same, maybe just a tad not so loud as usuall. I was happy. !0 days after surgery

my IMPLANTED ear got VERY, VERY LOUD. It feels like it is going to explode when

I have an episode. It starts out like a drill and gets louder and louder til

it sounds like a train. I did ask the doctor about it and he says tinnitus

isnot related to the implant. YEA RIGHT!!

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Guest guest

The tinnitus is probably not caused by the implant itself, but I suspect the

surgery, or any head surgery, could have disrupted your circulation. If

that is the case, the tinnitus should improve as you heal like mine did.

--

In a message dated 6/13/2005 4:14:21 PM Mountain Standard Time,

ec_nunez@... writes:

I did ask the doctor about it and he says tinnitus isnot related to the

implant. YEA RIGHT!!

Implanted December 1988, Activated January 1989

Legally blind most of my life

Totally deaf for part of my life

Nan Rosen

_www.rosetwig.com_ (http://www.rosetwig.com/)

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Guest guest

I have tinnitus in both ears and all over my head (different pitches.) At one

time it contolled my life. I did learn to live with it. I had my implant on my

Right ear. When I awoke in the recovery room the tinnitus seemed the same,

maybe just a tad not so loud as usuall. I was happy. !0 days after surgery my

IMPLANTED ear got VERY, VERY LOUD. It feels like it is going to explode when I

have an episode. It starts out like a drill and gets louder and louder til it

sounds like a train. I did ask the doctor about it and he says tinnitus isnot

related to the implant. YEA RIGHT!!

NanRosen@... wrote:

Are you talking about tinnitus in your implanted ear or the other, or both?

I had tinnitus like that after my surgery and it got better with time. My

CI masks tinnitus, but I still have it in the other ear.

I have good days and bad and occasionally at night when I roll over suddenly

and do not have my speech processor on, the loud tinnitus comes back. It

goes away in a few minutes and I go back to sleep. You learn to live with

that.

Check with your doctor and see what he says.

Does anyone know what causes tinnitus?

--

In a message dated 6/13/2005 2:23:21 PM Mountain Standard Time,

ec_nunez@... writes:

Ever since I lost my hearing suddenly 8 years ago I have had tinnitus. I

thought it could get no worse. June 1st was my surgery. On June 10 I woke up at

3 in the morning with the sound of a frieght train in my implanted ear which

included the sound of the train whistle to get out of the way. It was very

scary. Since then I have had 7 such episodes. When it passes the ear seems to

be peaceful but I now live in fear of an episode. My activation date is July

5. I am anxious.

I use to be able to mask it but can't anymore because that ear now has no

hearing.

Implanted December 1988, Activated January 1989

Legally blind most of my life

Totally deaf for part of my life

Nan Rosen

_www.rosetwig.com_ (http://www.rosetwig.com/)

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Guest guest

Elsa,

I had severe tinnitus following my CI surgery. In fact, it was so intense

that I considered taking Prednisone, but later declined because of

associated side effects. My tinnitus alternated between a freight train,

ocean sound and high pitched tone. Tinnitus can be caused by CI surgery

(i.e. trauma to the ear) as well as the loss of residual hearing. My audi

said my tinnitus was probably caused by a combination of both. Since I could

no longer hear any sound in my implanted ear, the only sound left to " hear "

was the tinnitus. Fortunately it gradually disappeared following my

activation. I still experience tinnitus when my CI and hearing aid are

removed, but it is nowhere near as intense as it used to be. What I hear now

equates to a fan turned on low speed.

If you find this really bothersome, I would ask your surgeon if he could

recommend something like Prednisone.

Implanted: 12/22/04 Activated: 1/18/05

Nucleus 24 Contour Advance with 3G

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

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LISA:I was on Predisone twice when my hearing suddenly

left me but it did not help the hearing to comeback so my doctor took me off of

it. As I mentioned before at 1 time tinnitus contolled my life. I was seeing a

skrink for coping skills. I was on Xanax and klonopin at different times for

anxiety. I was on Prozac for depression. I was on sleeping pills so I could

sleep. I was flying to Dallas once a month for Tinnitus Retraining Therapy. I

took a leave of absence from work. I finally got control of my life. So to have

this happen to me where the tinnitus goes up to such levels is scary because I

had learned to ignore it BUT this loudness you can not ignore. It does go away

and leaves me with hours of piece so i hope it will go away soon. Thanks

Kozlik <lisak70@...> wrote:

Elsa,

I had severe tinnitus following my CI surgery. In fact, it was so intense

that I considered taking Prednisone, but later declined because of

associated side effects. My tinnitus alternated between a freight train,

ocean sound and high pitched tone. Tinnitus can be caused by CI surgery

(i.e. trauma to the ear) as well as the loss of residual hearing. My audi

said my tinnitus was probably caused by a combination of both. Since I could

no longer hear any sound in my implanted ear, the only sound left to " hear "

was the tinnitus. Fortunately it gradually disappeared following my

activation. I still experience tinnitus when my CI and hearing aid are

removed, but it is nowhere near as intense as it used to be. What I hear now

equates to a fan turned on low speed.

If you find this really bothersome, I would ask your surgeon if he could

recommend something like Prednisone.

Implanted: 12/22/04 Activated: 1/18/05

Nucleus 24 Contour Advance with 3G

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

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>>So to have this happen to me where the tinnitus goes up to such levels is

scary because I had learned to ignore it BUT this loudness you can not

ignore. It does go away and leaves me with hours of piece so i hope it will

go away soon. Thanks<<

Elsa,

I can imagine how scary that must be! Try to redirect your attention to

something else (such as watching TV) so that you're not constantly focused

on the tinnitus. I know that's easier said than done, but the more you think

about the tinnitus, the worse/louder it will be. Hearing people turn on a

fan or a radio to white noise (static) to distract them from tinnitus, but

unfortunately that doesn't help those of us who are HoH or deaf. I wish I

could recommend something to help you feel better! <hugs>

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

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  • 1 month later...
Guest guest

,

Nice to hear from you again.

Congrats on your implant date!

I do indeed remember you posting last year and am glad the time will

soon be here for your ci surgery.

It'll be interesting to see what does happen with your tinnitus too.

Both my sisters had pretty bad tinnitus, but with their ci on, it

seems to be a lot less severe.. I'm thinking this may be due to the

ability to hear again.. it may be helping to mask the tinnitus a

lot. Luckily, I never had a bad problem with tinnitus except for

right after my surgery for a couple weeks while my incision site was

healing.

Please keep us posted on your surgery and progress and please email

me.. either here on the forum or privately if you have any questions

or comments you'd care to talk about.

Wishing you all the best.

Silly MI

In , " Mimi Magruder " <magruder8012@m...>

wrote:

>

> I have tinnitus only in my left ear. I have never had it in my

right ear, my worst ear for hearing. I am going to be implanted in

my left ear on August 10. It will be interesting to see what happens

to my tinnitus.

>

> in Louisville KY (I am a " lurker " in this group; I don't

think I've actually sent a message in about a year, so most of you

don't know me.)

>

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  • 4 weeks later...

Hi -

There is NO cure for tinnitus, unfortunately. Others have given you

ways that some people cope. I know there is one member who uses valium

(perscribed by his dr) and he says that helps him a great deal. I just try to

ignore

it, or I make up a tune and sing along! LOL Good luck.

:o) Jackie

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  • 1 month later...

In a message dated 9/30/05 6:27:47 AM Mountain Daylight Time,

SSRI medications writes:

> It's so aggravating and distracting, I think I'll lose my mind!!!!!

>

A friend of mine developed tinnitus after taking lots of Vicodin -- he is now

a human lab rat in some clinical trial for a med that treats tinnitus caused

by acetominophen. That's about all I know about it. But what a drag.

Blind Reason

A novel of pharmaceutical intrigue

Think your antidepressant is safe?

Think again.

" All the truth in the world adds up to one big lie. "

~ Bob Dylan ~

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In a message dated 9/30/05 6:27:47 AM Mountain Daylight Time,

SSRI medications writes:

> It's so aggravating and distracting, I think I'll lose my mind!!!!!

>

A friend of mine developed tinnitus after taking lots of Vicodin -- he is now

a human lab rat in some clinical trial for a med that treats tinnitus caused

by acetominophen. That's about all I know about it. But what a drag.

Blind Reason

A novel of pharmaceutical intrigue

Think your antidepressant is safe?

Think again.

" All the truth in the world adds up to one big lie. "

~ Bob Dylan ~

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  • 3 weeks later...

Hi Laurie,

I had Tinnitus quite bad before my implant surgery but it settled down

completely after the surgery. :D I do still get the occational " Attack " of

Tinnitus but it is nothing like before and is getting less severe as time

passes. I know others have posted that it generally settles down and that is

what I was told by both my Audie and surgeon. Everyone is different of course,

but I think in the majority of CI users this is something that improves,

although you should discuss it with your Audie on your next appointment they

might be able to " Tweak " you mapping to improve things when the CI is on, sure

worth asking.

Regards,

Mike " Ears Hopin " P

>

> Hello again from Tennessee!

>

> I had my third mapping session with my audi on Tuesday. Have been

> struggling with tinnitus really bad ever since then. The noise in my head is

loud

> enough to keep me awake! I never had problems with it or noticed it before my

> implant but now seem to have a constant roar or siren in my head. Will this

> go away? Has anyone else had a similar experience after being mapped?

>

> In spite of the tinnitus, I'm still hearing great. Still have a long way to

> go and share some of the same experiences that others are having that were

> implanted and activated the same time I was. I wouldn't go back to a hearing

> aid again!

>

> Laurie here in TN

>

> Implanted 08/30/05 with Freedom

> Activated 09/20/05

>

>

>

>

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I never had ringing in my ears before my surgery but I find that once I take

my processor off at night I have a lot of ringing. I guess I will just have

to get used to it b/c I don't want to leave my processor on 24/7. My scalp

needs time to breathe without the magnet on it.

_____

From: [mailto: ] On Behalf Of

ldpullins@...

Sent: Thursday, October 20, 2005 8:27 PM

Subject: Tinnitus

Hello again from Tennessee!

I had my third mapping session with my audi on Tuesday. Have been

struggling with tinnitus really bad ever since then. The noise in my head

is loud

enough to keep me awake! I never had problems with it or noticed it before

my

implant but now seem to have a constant roar or siren in my head. Will

this

go away? Has anyone else had a similar experience after being mapped?

In spite of the tinnitus, I'm still hearing great. Still have a long way

to

go and share some of the same experiences that others are having that were

implanted and activated the same time I was. I wouldn't go back to a

hearing

aid again!

Laurie here in TN

Implanted 08/30/05 with Freedom

Activated 09/20/05

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-

I had the same problem shortly after surgery a year and half ago. I

asked my surgeon about it and he told me that was not unexpected and

would go away in a short time. It did go away in about a couple of

weeks. Hope this makes you feel better.

Bill

>

> I never had ringing in my ears before my surgery but I find that

once I take

> my processor off at night I have a lot of ringing. I guess I will

just have

> to get used to it b/c I don't want to leave my processor on 24/7.

My scalp

> needs time to breathe without the magnet on it.

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> ldpullins@a...

> Sent: Thursday, October 20, 2005 8:27 PM

>

> Subject: Tinnitus

>

>

>

> Hello again from Tennessee!

>

> I had my third mapping session with my audi on Tuesday. Have

been

> struggling with tinnitus really bad ever since then. The noise in

my head

> is loud

> enough to keep me awake! I never had problems with it or noticed

it before

> my

> implant but now seem to have a constant roar or siren in my

head. Will

> this

> go away? Has anyone else had a similar experience after being

mapped?

>

> In spite of the tinnitus, I'm still hearing great. Still have a

long way

> to

> go and share some of the same experiences that others are having

that were

> implanted and activated the same time I was. I wouldn't go back

to a

> hearing

> aid again!

>

> Laurie here in TN

>

> Implanted 08/30/05 with Freedom

> Activated 09/20/05

>

>

>

>

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My oldest son had tinnitus pretty bad, still does sometimes does

now, but not as much. We suspect my youngest son has problems with

tinitus, especially when allergy counts are high. I'm guessing this

might be what was messing with his sleep, too. Since the allergy

counts are lower, we started keeping his CI on as he falls asleep

listening to music, and maybe the melatonin at night, too, anyway

he's sleeping much better through the night, too. I wish he could

tell me, had better language. But my mommy hunch tells me he has

tinnitus problems, too, and his CI might help " mask " it.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bionicboys.blogspot.com

BEA Volunteer

>

> I never had ringing in my ears before my surgery but I find that

once I take

> my processor off at night I have a lot of ringing. I guess I will

just have

> to get used to it b/c I don't want to leave my processor on 24/7.

My scalp

> needs time to breathe without the magnet on it.

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> ldpullins@a...

> Sent: Thursday, October 20, 2005 8:27 PM

>

> Subject: Tinnitus

>

>

>

> Hello again from Tennessee!

>

> I had my third mapping session with my audi on Tuesday. Have

been

> struggling with tinnitus really bad ever since then. The noise in

my head

> is loud

> enough to keep me awake! I never had problems with it or noticed

it before

> my

> implant but now seem to have a constant roar or siren in my

head. Will

> this

> go away? Has anyone else had a similar experience after being

mapped?

>

> In spite of the tinnitus, I'm still hearing great. Still have a

long way

> to

> go and share some of the same experiences that others are having

that were

> implanted and activated the same time I was. I wouldn't go back

to a

> hearing

> aid again!

>

> Laurie here in TN

>

> Implanted 08/30/05 with Freedom

> Activated 09/20/05

>

>

>

>

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  • 2 months later...

I have had it in a slight degree since I was very little. As an adult I noticed it more and now that the packing is still in it is driving me nuts! Toniyankeesfan1013 <BSORules@...> wrote: Hi, Everyone,I was just wondering how many of you now have tinnitus. I've had itsince I first got the cholesteatoma. How about the rest of you? I'mjust wondering how common it is. Kathy

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

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I've had it since I was a kid. It used to drive me nuts, but now I've

grown used to it and can tune it out very easily. The tinnitus has

gotten worse in the ear that had ctoma, but I can still handle it.

Dave

>

> Hi, Everyone,

>

> I was just wondering how many of you now have tinnitus. I've had it

> since I first got the cholesteatoma. How about the rest of you? I'm

> just wondering how common it is.

>

> Kathy

>

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  • 3 months later...
Guest guest

I have tinnitus and had my CI 3 years ago and I still have it. It isn't as

annoying as before I guess you could say but it's still there.

On 5/11/06, Tom Fortman <kfortman@...> wrote:

>

> I would like to hear from ci users that have tinnitus, that has not gone

> away after activation. It' been two months since I was activated

>

>

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Guest guest

Re: tinnitus

>I have tinnitus and had my CI 3 years ago and I still have it. It isn't as

> annoying as before I guess you could say but it's still there.

>

> On 5/11/06, Tom Fortman <kfortman@...> wrote:

>>

>> I would like to hear from ci users that have tinnitus, that has not gone

>> away after activation. It' been two months since I was activated

>>

>>

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