Re: Fw: Welcome to . Visit today!

[Guest guest]

Jon,

 

I had to make a similar decision.  I opted for the ear I was completely deaf in

so I can still use the aid in my partial hearing ear and/or be able to hear loud

noises when I have all of my devices off. 

 

Judy

 

From: <rclark0276@...>

Subject: Fw: : Welcome to . Visit today!

" " < >

Date: Monday, December 1, 2008, 1:22 PM

Re: : Welcome to . Visit today!

Thanks Alice my name is Jon Cook and i live in Brisbane Australia.I have

full loss of hearing in my right ear since birth and partial loss in my left

ear which is slowly getting worse i have completed all of the tests and can

have a inplant in either ear but am still unsure of the best option.I have

joined your group to see if there are others who have had to make a similar

choice and any other info regarding cochlear . The web site is excellent

...Jon

[Guest guest]

Hello Jon and welcome to the group.

Another Aussie...we are taking over :-).

My two ears were very similar to each other and I opted to have the

" worst " one done. I still wear a hearing aid in my other ear, which

works pretty well with the CI. I was operated on at the Mater in

Brisbane by Dr Que Hee. He is an Aussie and is an excellent

surgeon.

I'm on the Gold Coast, but there are a couple of others here from

Brisbane and Sydney. If I can be of any help to you, email me at ted

dot fletcher at Lycos dot com

Ted F.

> Re: : Welcome to . Visit today!

>

>

> Thanks Alice my name is Jon Cook and i live in Brisbane Australia.I

have

> full loss of hearing in my right ear since birth and partial loss in

my left

> ear which is slowly getting worse i have completed all of the tests

and can

> have a inplant in either ear but am still unsure of the best

option.I have

> joined your group to see if there are others who have had to make a

similar

> choice and any other info regarding cochlear . The web site is

excellent

> .Jon

>

[Guest guest]

Hi, Jon. I chose to first implant the side that had suffered

vestibular insult (balance loss) already when I had been ill (which

caused my deafness). That way, if the CI surgery caused more

vestibular insult, it would be to the already insulted side, leaving me

one good side to compensate.

Thankfully, the CI surgery did no further damage. In fact, I did so

well with the first one in September, that I got the second side

implanted in November and am awaiting my activation for that side. All-

in-all this CI process has given me my life back in most ways, and I

can't wait to be stereo for Christmas!

--

[Guest guest]

When I had hearing with my natural ears, my hearing would fluctuate wildly also.

One day, however, my hearing dropped and never came back. I had been diagnosed

with bilateral Menieres about 10 years before that happened.

Fw: : Welcome to . Visit today!

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at

http://www..com<http://www..com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hi Eliot

I have had Meniere's for 20 years in my right ear and about 10 years in my

left. I also have had the shunt surgery and endolymphatic sac decompression

surgery, both surgeries at the same time on my left ear only.. Unfortunately

both procedures worked for me for only about a month. I had cochlear implant

surgery Nov of 2009 on my right ear and still wear a hearing aid in my left ear.

To answer your question, it's my understanding that  Menieres must include

several symptoms in order to be diagnosed as typical Menieres.; vertigo,

fullness in the affected ear, tinnitus (ringing) and fluctuating hearing loss. I

still experienced fluctuating hearing even though both ears burned out on the

dizziness long ago. All Menieres symptoms in my implant ear have stopped since

my implanrt surgery. Of course I now have no natural hearing in the implant ear

without the processer but suprisingly the tinnitus has stopped as well as the

full feeling. Dizziness had

stopped a while ago except for a lightheaded feeling I would sometime get. I do

notice that I have greater fluctuation in hearing in my left hearing aid ear if

I eat certain food. My triggers are alcohol and food containing nitrates such as

hot dogs, cold cuts,sausage etc. You may want to keep a food diary and see if

there is any correlation with your hearing dropping and the foods that you are

eating that may be triggering your fluctuation.

________________________________

From: A ADAMS <justagram14@...>

< >

Sent: Thu, March 11, 2010 4:59:26 PM

Subject: Fw: : Welcome to . Visit today!

 

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hello, Elliot! Nice to meet you and welcome in to this great resource

group. Jackie )

[Guest guest]

Hi Eliot,

 

I had fluctuating hearing loss in my right ear for 7 years before the ear

burned itself out. I lost the hearing in my left ear fairly quickly in 2001.  I

would go months without even needing a hearing aid in my right ear then it would

drop out. I went through oral steroids and steroid injections into my ear, I

have been on a slew of auto immune drugs.  Did they work? I dont know.  Maybe

my ear just fluctuated by itself or maybe the steroids help bring it back. It

went out Feb 2009 and it didnt come back.  I have bi lateral ci's now.  I miss

my natural hearing desperately and I miss music alot too. Hang in there!

 

Lori

From: A ADAMS <justagram14@...>

Subject: Fw: : Welcome to . Visit today!

" " < >

Date: Thursday, March 11, 2010, 2:59 PM

 

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hello Regina:

Thanks for your comments, although I'm sorry to hear that the surgical

procedures (prior to your CI) didn't work for very long. I had the sac

decompression procedure done in 2005 on my left ear. But since then, my

Meniere's has crept into my right ear, so I'm concerned that the vertigo could

return on the right side. Just have to wait and see, I guess.

Thanks for the suggestions about triggers. When I was getting regular vertigo

attacks, caffeine was definitely a trigger, but it doesn't seem to bother me

lately. But I'll keep an eye on the nitrates, as you suggest. My tinnitus (in

both ears) fluctuates daily, so perhaps it is related to dietary issues.

Eliot

From: Regina Marulli

Sent: Thursday, March 11, 2010 5:05 PM

Subject: Re: Fw: : Welcome to . Visit today!

Hi Eliot

I have had Meniere's for 20 years in my right ear and about 10 years in my

left. I also have had the shunt surgery and endolymphatic sac decompression

surgery, both surgeries at the same time on my left ear only.. Unfortunately

both procedures worked for me for only about a month. I had cochlear implant

surgery Nov of 2009 on my right ear and still wear a hearing aid in my left ear.

To answer your question, it's my understanding that Menieres must include

several symptoms in order to be diagnosed as typical Menieres.; vertigo,

fullness in the affected ear, tinnitus (ringing) and fluctuating hearing loss. I

still experienced fluctuating hearing even though both ears burned out on the

dizziness long ago. All Menieres symptoms in my implant ear have stopped since

my implanrt surgery. Of course I now have no natural hearing in the implant ear

without the processer but suprisingly the tinnitus has stopped as well as the

full feeling. Dizziness had

stopped a while ago except for a lightheaded feeling I would sometime get. I

do notice that I have greater fluctuation in hearing in my left hearing aid ear

if I eat certain food. My triggers are alcohol and food containing nitrates such

as hot dogs, cold cuts,sausage etc. You may want to keep a food diary and see if

there is any correlation with your hearing dropping and the foods that you are

eating that may be triggering your fluctuation.

________________________________

From: A ADAMS <justagram14@...>

< >

Sent: Thu, March 11, 2010 4:59:26 PM

Subject: Fw: : Welcome to . Visit today!

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hi Lori:

Thanks for the feedback. I have also gone through the steroid pills and

injections, with no apparent effect. This week my doctor put me on a 60 day

antihistamine treatment (Claritin -- over the counter), but I think he's just

grasping at straws. He said " my ear seems to have a mind of its own " . Very

helpful.

Sorry you have had to have two CIs, but thank goodness we live in a day and age

when this technology is available. As my hearing continues to deteriorate, this

provides some comfort to me (and my wife).

Eliot

From: LORI PRANCKEVICUS

Sent: Friday, March 12, 2010 6:48 AM

Subject: Re: Fw: : Welcome to . Visit today!

Hi Eliot,

I had fluctuating hearing loss in my right ear for 7 years before the ear

burned itself out. I lost the hearing in my left ear fairly quickly in 2001. I

would go months without even needing a hearing aid in my right ear then it would

drop out. I went through oral steroids and steroid injections into my ear, I

have been on a slew of auto immune drugs. Did they work? I dont know. Maybe my

ear just fluctuated by itself or maybe the steroids help bring it back. It went

out Feb 2009 and it didnt come back. I have bi lateral ci's now. I miss my

natural hearing desperately and I miss music alot too. Hang in there!

Lori

From: A ADAMS <justagram14@...>

Subject: Fw: : Welcome to . Visit today!

" " < >

Date: Thursday, March 11, 2010, 2:59 PM

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Eliot,

I am learning as we go as far as hearing loss and mineares disease since I have

both.  Can you tell me what  a sac decompression is if you don't mind?

Thanks,

O

________________________________

From: Eliot Terborgh <eliot@...>

Sent: Fri, March 12, 2010 7:45:03 PM

Subject: Re: Fw: : Welcome to . Visit today!

 

Hello Regina:

Thanks for your comments, although I'm sorry to hear that the surgical

procedures (prior to your CI) didn't work for very long. I had the sac

decompression procedure done in 2005 on my left ear. But since then, my

Meniere's has crept into my right ear, so I'm concerned that the vertigo could

return on the right side. Just have to wait and see, I guess.

Thanks for the suggestions about triggers. When I was getting regular vertigo

attacks, caffeine was definitely a trigger, but it doesn't seem to bother me

lately. But I'll keep an eye on the nitrates, as you suggest. My tinnitus (in

both ears) fluctuates daily, so perhaps it is related to dietary issues.

Eliot

From: Regina Marulli

Sent: Thursday, March 11, 2010 5:05 PM

groups (DOT) com

Subject: Re: Fw: : Welcome to . Visit today!

Hi Eliot

I have had Meniere's for 20 years in my right ear and about 10 years in my left.

I also have had the shunt surgery and endolymphatic sac decompression surgery,

both surgeries at the same time on my left ear only.. Unfortunately both

procedures worked for me for only about a month. I had cochlear implant surgery

Nov of 2009 on my right ear and still wear a hearing aid in my left ear. To

answer your question, it's my understanding that Menieres must include several

symptoms in order to be diagnosed as typical Menieres.; vertigo, fullness in the

affected ear, tinnitus (ringing) and fluctuating hearing loss. I still

experienced fluctuating hearing even though both ears burned out on the

dizziness long ago. All Menieres symptoms in my implant ear have stopped since

my implanrt surgery. Of course I now have no natural hearing in the implant ear

without the processer but suprisingly the tinnitus has stopped as well as the

full feeling. Dizziness had

stopped a while ago except for a lightheaded feeling I would sometime get. I do

notice that I have greater fluctuation in hearing in my left hearing aid ear if

I eat certain food. My triggers are alcohol and food containing nitrates such as

hot dogs, cold cuts,sausage etc. You may want to keep a food diary and see if

there is any correlation with your hearing dropping and the foods that you are

eating that may be triggering your fluctuation.

____________ _________ _________ __

From: A ADAMS <justagram14@ msn.com>

<groups (DOT) com>

Sent: Thu, March 11, 2010 4:59:26 PM

Subject: Fw: : Welcome to . Visit today!

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hi Eliot,

 

I agree that the ci technology is amazing.  I am totally deaf but I hear out of

both " ears " . its not perfect but it is still pretty awesome.I tried

antihistimines too.  One thing I tried that I think did work for a while is

the regimen listed in the following:

http://www.menieresfoundation.org/johnsregimen.htm

 

Doctors truly have no clue at all as to what is happening with the fluctuating

hearing. Unfortunately there is not much we can do. 

Good luck

Lori

From: A ADAMS <justagram14@ msn.com>

Subject: Fw: : Welcome to . Visit today!

" " <groups (DOT) com>

Date: Thursday, March 11, 2010, 2:59 PM

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hello :

Since I am not a medical expert, I am attaching a link which describes the sac

decompression surgery, as well as a number of other surgical procedure for

Meniere's.

Hope this is helpful.

Eliot

http://www.earsurgery.org/site/pages/conditions/menieres-syndrome.php

From: Ortis

Sent: Friday, March 12, 2010 7:14 PM

Subject: Re: Fw: : Welcome to . Visit today!

Eliot,

I am learning as we go as far as hearing loss and mineares disease since I

have both. Can you tell me what a sac decompression is if you don't mind?

Thanks,

O

________________________________

From: Eliot Terborgh <eliot@...>

Sent: Fri, March 12, 2010 7:45:03 PM

Subject: Re: Fw: : Welcome to . Visit today!

Hello Regina:

Thanks for your comments, although I'm sorry to hear that the surgical

procedures (prior to your CI) didn't work for very long. I had the sac

decompression procedure done in 2005 on my left ear. But since then, my

Meniere's has crept into my right ear, so I'm concerned that the vertigo could

return on the right side. Just have to wait and see, I guess.

Thanks for the suggestions about triggers. When I was getting regular vertigo

attacks, caffeine was definitely a trigger, but it doesn't seem to bother me

lately. But I'll keep an eye on the nitrates, as you suggest. My tinnitus (in

both ears) fluctuates daily, so perhaps it is related to dietary issues.

Eliot

From: Regina Marulli

Sent: Thursday, March 11, 2010 5:05 PM

groups (DOT) com

Subject: Re: Fw: : Welcome to . Visit today!

Hi Eliot

I have had Meniere's for 20 years in my right ear and about 10 years in my

left. I also have had the shunt surgery and endolymphatic sac decompression

surgery, both surgeries at the same time on my left ear only.. Unfortunately

both procedures worked for me for only about a month. I had cochlear implant

surgery Nov of 2009 on my right ear and still wear a hearing aid in my left ear.

To answer your question, it's my understanding that Menieres must include

several symptoms in order to be diagnosed as typical Menieres.; vertigo,

fullness in the affected ear, tinnitus (ringing) and fluctuating hearing loss. I

still experienced fluctuating hearing even though both ears burned out on the

dizziness long ago. All Menieres symptoms in my implant ear have stopped since

my implanrt surgery. Of course I now have no natural hearing in the implant ear

without the processer but suprisingly the tinnitus has stopped as well as the

full feeling. Dizziness had

stopped a while ago except for a lightheaded feeling I would sometime get. I

do notice that I have greater fluctuation in hearing in my left hearing aid ear

if I eat certain food. My triggers are alcohol and food containing nitrates such

as hot dogs, cold cuts,sausage etc. You may want to keep a food diary and see if

there is any correlation with your hearing dropping and the foods that you are

eating that may be triggering your fluctuation.

____________ _________ _________ __

From: A ADAMS <justagram14@ msn.com>

<groups (DOT) com>

Sent: Thu, March 11, 2010 4:59:26 PM

Subject: Fw: : Welcome to . Visit today!

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>

[Guest guest]

Hi Lori:

Thanks for the link to " 's Treatment " . This was fascinating -- I had never

seen it before. I'll certainly consider trying his regimen, particularly if the

dizzy spells return.

Eliot

From: LORI PRANCKEVICUS

Sent: Saturday, March 13, 2010 8:27 AM

Subject: Re: Fw: : Welcome to . Visit today!

Hi Eliot,

I agree that the ci technology is amazing. I am totally deaf but I hear out

of both " ears " . its not perfect but it is still pretty awesome.I tried

antihistimines too. One thing I tried that I think did work for a while is the

regimen listed in the following:

http://www.menieresfoundation.org/johnsregimen.htm

Doctors truly have no clue at all as to what is happening with the fluctuating

hearing. Unfortunately there is not much we can do.

Good luck

Lori

From: A ADAMS <justagram14@ msn.com>

Subject: Fw: : Welcome to . Visit today!

" " <groups (DOT) com>

Date: Thursday, March 11, 2010, 2:59 PM

: Welcome to . Visit today!

>

> Welcome to CI Hear. Please take a moment to introduce yourself to the

> group and let us get to know you. If you haven't been to the website, you

> will find a great deal of information there at http://www..

com<http://www.. com/>.

>

> We are glad you joined us.

>

> Alice

> CI Hear Listowner

>

>

>

>