Hearing loss support - otosclerosis + vertigo

Author

otosclerosis + vertigo

Mary Green

2004-08-12, 10:18 pm

Hi there,
Does anyone out there experience vertigo and hearing loss due to
otosclerosis - a conductive hearing loss? Also - is there anyone who has
had a stapesdectomy and have any suggestions? What about the BAHA - bone
anchored hearing aids? I am experiencing a great deal of isolation and
frustration with hearing loss - hearing aids seem to ampliphy everything
rather than help with hearing and understanding speech. I am hoping for
some helpful suggestions...thanks a bunch!
Mary

MrQuarter

2004-08-14, 12:26 pm

"Woodswun" <woodswun@tepidmail.com> wrote in message
news:NMTSc.20870$Kt5.1269@twister.nyroc.rr.com...
> In article <1d3d875b.0408110346.19cfec67@posting.google.com>,
zafdor@yahoo.com (Zaf) wrote:
<CeJRc.1579801$Ar.673104@twister01.bloor.is.net.cable.rogers.com>,[vbcol=seagreen]
try to[vbcol=seagreen]
Not sure[vbcol=seagreen]
longer[vbcol=seagreen]
gone a[vbcol=seagreen]
ability to[vbcol=seagreen]
improve[vbcol=seagreen]
with the[vbcol=seagreen]
>
> No, the ENT I went to didn't really know much about that, said there was
"a"
> doctor somewhere (I think he said Nashville, or somesuch) that was testing
> flouride, but it likely didn't work.
>
> Have you been taking that? Have you noticed an improvement, or a
cessation in
> the deterioration of your hearing? If so, what's the recommended dosage?
>
> Woods

I've had 5 stapedectomies due to otosclorosis in both ears. 3 in one ear, 2
in the other. Only the first stapedectomies in each ear helped. The rest
lessened my hearing. And the last one (in the ear with 3 operations) is now
completely deaf. I was told by that last ENT that there was a 2% chance of
going completely deaf due to the operation and after I lost all hearing
after the last operation the doctor said it was the first time that had ever
happened to him. Also, with each operation you may gain some, but you lose a
little with each and every operation. Kind of like two steps forward, one
step back. I also want to add the 5 operations spaced out over a 20 year
period and the last doctor was a bad choice in my opinion. My first dortor
was an older man. but worlds ahead in experience. His last operation on me
left my hearing the same and he only charged what the insurance gave him.
And the last doctor who caused me to lose what hearing I had in one ear
didn't charge me. Little help! He did admit the operation was the cause of
the total loss of hearing in that ear. Now I live with wearing one BTE. I
still get very stressed with conversations, and it's magnified exponentely
in a crowd. I lost my hearing in my right ear, so when I'm driving my
elementary school daughters to and from school I can't carry on a
conversation with them. Hearing in public places is extremely stressful and
usually avoided as much as possible. All my operations except the last were
done with stapes from the bone bank, not the steel ones.
I guess the one thing I want to get across is find the BEST doctor if you
are going to have the operation. Do your homework. I feel because of my lack
of checking out this doctor, I lost my hearing in that ear. I feel a
"knowledgable" doctor would have told me not to have the operation. There my
2 cents worth!

Terry

Zaf

2004-08-15, 4:15 am

"MrQuarter" <MrQuarter@nospamcomcast.net> wrote in message news:<gwbTc.3367$mD.2129@attbi_s02>...
> "Woodswun" <woodswun@tepidmail.com> wrote in message
> news:NMTSc.20870$Kt5.1269@twister.nyroc.rr.com...
> zafdor@yahoo.com (Zaf) wrote:
> <CeJRc.1579801$Ar.673104@twister01.bloor.is.net.cable.rogers.com>,
> "Mary Green" <mgreen8184@rogers.com> wrote:
> try to
> Not sure
> if
> longer
> I've
> gone a
> ability to
> improve
>
> with the
>
> "a"
> cessation in
>
> I've had 5 stapedectomies due to otosclorosis in both ears. 3 in one ear, 2
> in the other. Only the first stapedectomies in each ear helped. The rest
> lessened my hearing. And the last one (in the ear with 3 operations) is now
> completely deaf. I was told by that last ENT that there was a 2% chance of
> going completely deaf due to the operation and after I lost all hearing
> after the last operation the doctor said it was the first time that had ever
> happened to him. Also, with each operation you may gain some, but you lose a
> little with each and every operation. Kind of like two steps forward, one
> step back. I also want to add the 5 operations spaced out over a 20 year
> period and the last doctor was a bad choice in my opinion. My first dortor
> was an older man. but worlds ahead in experience. His last operation on me
> left my hearing the same and he only charged what the insurance gave him.
> And the last doctor who caused me to lose what hearing I had in one ear
> didn't charge me. Little help! He did admit the operation was the cause of
> the total loss of hearing in that ear. Now I live with wearing one BTE. I
> still get very stressed with conversations, and it's magnified exponentely
> in a crowd. I lost my hearing in my right ear, so when I'm driving my
> elementary school daughters to and from school I can't carry on a
> conversation with them. Hearing in public places is extremely stressful and
> usually avoided as much as possible. All my operations except the last were
> done with stapes from the bone bank, not the steel ones.
> I guess the one thing I want to get across is find the BEST doctor if you
> are going to have the operation. Do your homework. I feel because of my lack
> of checking out this doctor, I lost my hearing in that ear. I feel a
> "knowledgable" doctor would have told me not to have the operation. There my
> 2 cents worth!
>
> Terry
The success rate for revision surgery is lower then primary surgery.
FWIW, my ENT said there is only one guy he would refer me to for
revision stapedectomy: William Lippy in Warran, OH.

Woodswun

2004-08-15, 11:22 am

In article <gwbTc.3367$mD.2129@attbi_s02>, "MrQuarter" <MrQuarter@nospamcomcast.net> wrote:
>
>"Woodswun" <woodswun@tepidmail.com> wrote in message
>news:NMTSc.20870$Kt5.1269@twister.nyroc.rr.com...
>zafdor@yahoo.com (Zaf) wrote:
><CeJRc.1579801$Ar.673104@twister01.bloor.is.net.cable.rogers.com>,
>try to
>Not sure
>longer
>gone a
>ability to
>improve
>with the
>"a"
>cessation in
>
> I've had 5 stapedectomies due to otosclorosis in both ears. 3 in one ear, 2
>in the other. Only the first stapedectomies in each ear helped. The rest
>lessened my hearing. And the last one (in the ear with 3 operations) is now
>completely deaf. I was told by that last ENT that there was a 2% chance of
>going completely deaf due to the operation and after I lost all hearing
>after the last operation the doctor said it was the first time that had ever
>happened to him. Also, with each operation you may gain some, but you lose a
>little with each and every operation. Kind of like two steps forward, one
>step back. I also want to add the 5 operations spaced out over a 20 year
>period and the last doctor was a bad choice in my opinion. My first dortor
>was an older man. but worlds ahead in experience. His last operation on me
>left my hearing the same and he only charged what the insurance gave him.
>And the last doctor who caused me to lose what hearing I had in one ear
>didn't charge me. Little help! He did admit the operation was the cause of
>the total loss of hearing in that ear. Now I live with wearing one BTE. I
>still get very stressed with conversations, and it's magnified exponentely
>in a crowd. I lost my hearing in my right ear, so when I'm driving my
>elementary school daughters to and from school I can't carry on a
>conversation with them. Hearing in public places is extremely stressful and
>usually avoided as much as possible. All my operations except the last were
>done with stapes from the bone bank, not the steel ones.
> I guess the one thing I want to get across is find the BEST doctor if you
>are going to have the operation. Do your homework. I feel because of my lack
>of checking out this doctor, I lost my hearing in that ear. I feel a
>"knowledgable" doctor would have told me not to have the operation. There my
>2 cents worth!

I did some research into otosclerosis and the statistics for problems shortly
after seeing my ENT. He was dead on for all of them, so I have some amount of
confidence that he knew something about it, but he did not perform the surgery
himself. He was willing to recommend someone in a nearby city who performed the
surgery, but I wasn't interested in such a risk at the time, and I also do not
take referrals to friends/buddies of my doctor. (I think that there is some
amount of blindness on the part of professionals when it comes to recommending
people they know - now, if he'd had some names in Boston or Nashville where all
the experts are supposedly located, that's something else.)

Woods

Woodswun

2004-08-15, 11:22 am

In article <1d3d875b.0408141635.6a734fe8@posting.google.com>, zafdor@yahoo.com (Zaf) wrote:
>"MrQuarter" <MrQuarter@nospamcomcast.net> wrote in message
> news:<gwbTc.3367$mD.2129@attbi_s02>...
>The success rate for revision surgery is lower then primary surgery.
>FWIW, my ENT said there is only one guy he would refer me to for
>revision stapedectomy: William Lippy in Warran, OH.

Are you in/near Ohio? Does he personally know this person?

(I know someone who had a stapedectomy about 15 years ago, not sure if she's in
need of a revision, but if this isn't a personal friend of your ENT, I'll hold
onto the name for her).

Woods

tlshell@concentric.net

2004-08-16, 7:19 am

On Mon, 09 Aug 2004 11:29:38 GMT, "Mary Green" <mgreen8184@rogers.com>
took a very strange rock and inscribed these words:

>I am experiencing a great deal of isolation and
>frustration with hearing loss - hearing aids seem to ampliphy everything
>rather than help with hearing and understanding speech. I am hoping for
>some helpful suggestions.

Speechreading can help with things that sound similar but look
different, it's something you can pick up with practice and use of
hearing aids. There's a video out there on speechreading that I
haven't seen but it may be useful; try Harris Communications for a
full line of resources. (http://www.harriscomm.com/) Another thing you
might try is a Pocket Talker, it's used for one-on-one situations
where there is too much background noise for hearing aids to work
effectively.

--
Therese Shellabarger / The Roving Reporter - Civis Mundi
tlshell@concentric.net / http://tlshell.cnc.net/

Zaf

2004-08-16, 7:19 am

woodswun@tepidmail.com (Woodswun) wrote in message news:<e_JTc.28001$> >The success rate for revision surgery is lower then primary surgery.
>
> Are you in/near Ohio? Does he personally know this person?
>
> (I know someone who had a stapedectomy about 15 years ago, not sure if she's in
> need of a revision, but if this isn't a personal friend of your ENT, I'll hold
> onto the name for her).
>
> Woods

No, I'm in the northeast. Never been to the lippy clinic. I don't
think my ENT is a personal friend, just aware of the work they do
there.

Zaf

2004-08-16, 7:19 am

woodswun@tepidmail.com (Woodswun) wrote in message news:<NMTSc.20870$Kt5.1269@twister.nyroc.rr.com>...
> In article <1d3d875b.0408110346.19cfec67@posting.google.com>, zafdor@yahoo.com (Zaf) wrote:
> "Mary Green" <mgreen8184@rogers.com> wrote:
> if
> I've
>
>
>
> No, the ENT I went to didn't really know much about that, said there was "a"
> doctor somewhere (I think he said Nashville, or somesuch) that was testing
> flouride, but it likely didn't work.
>
> Have you been taking that? Have you noticed an improvement, or a cessation in
> the deterioration of your hearing? If so, what's the recommended dosage?
>
> Woods

Flouride has been 'controversial' for the treatment of otosclorosis.
There have not been any large scale studies. My ent claims based on
his patients, he believes it works. I've been on various regimes for
about 10+ years now. Year to year, my hearing changes a little
(sometimes even improving beyond measurement error in a single band),
but all in all it has been unchanged with this treatment, which is
certainly better then it getting worse!

You're probably best off finding a doc that believes in this treatment
rather then reading the dosage on the internet (but the flouride can
be purchased over the counter). It it despensed as 'flourical' and
the dosage I was on was 6 a day, along with caltrate w/D vitemens.

Woodswun

2004-08-17, 7:19 pm

In article <1d3d875b.0408110346.19cfec67@posting.google.com>, zafdor@yahoo.com (Zaf) wrote:
>woodswun@tepidmail.com (Woodswun) wrote in message
> news:<jNURc.5736$Kt5.3485@twister.nyroc.rr.com>...
> "Mary Green" <mgreen8184@rogers.com> wrote:
> if
> I've
>Vertigo is not unusual with otosclorosis, distortion is.
>
>
>
>I think you will find the rate of success is actually getting LOWER
>due to the smaller number of surgeons performing the operation. The
>advertised success rate of 90+% is complete bull$hit based on the
>small sample of people I spoke to who had this procedure (me
>included). Are you taking flouride/fosamax?

No, the ENT I went to didn't really know much about that, said there was "a"
doctor somewhere (I think he said Nashville, or somesuch) that was testing
flouride, but it likely didn't work.

Have you been taking that? Have you noticed an improvement, or a cessation in
the deterioration of your hearing? If so, what's the recommended dosage?

Woods

Woodswun

2004-08-18, 10:12 pm

Zaf

2004-08-19, 7:10 am

Zaf

2004-08-19, 7:15 pm

Zaf

2004-08-19, 10:11 pm

Woodswun

2004-08-20, 2:11 am

2004-08-25, 12:24 pm

Mary Green wrote:

> Does anyone out there experience vertigo and hearing loss due to
> otosclerosis - a conductive hearing loss?

I have otosclerosis with hearing loss, and have suffered vertigo only
twice in my life--the attacks were just a couple of weeks apart and hit
while I was lying down. The room suddenly started whirling around at a
weird angle. Scared me half to death, but it hasn't repeated in five
years, and I never saw a doctor about it. Other than those two
incidents, I'm not even particularly prone to dizziness.

> Also - is there anyone who has
> had a stapesdectomy and have any suggestions?

I had a stapedectomy about 10 years ago. It restored my hearing, and
that ear is now my "good" one (although the hearing has deteriorated
somewhat in the intervening years). However, just a few days after the
operation, I was awakened by a ringing sound in my ear that has never
gone away. I'm torn about whether the surgery was a success. I can get
by in most situations without a hearing aid in that ear (I have one for
situations where comprehension is vital), and I can use a regular
telephone on that side.

Also, I like to windsurf and it would be impossible to do so if I didn't
have this one functioning ear--it would be simply unsafe not to be able
to hear out there. But that tinnitus--it drives me insane.

In the meantime, my other ear has deteriorated to the point that I am
completely dependent on the hearing aid in that ear, but I'm also very
happy with it. I have absolutely no intention of having a stapedectomy
on that ear, but a lot of that has to do with my satisfaction with my
hearing aid.

> What about the BAHA - bone
> anchored hearing aids? I am experiencing a great deal of isolation and
> frustration with hearing loss - hearing aids seem to ampliphy everything
> rather than help with hearing and understanding speech. I am hoping for
> some helpful suggestions...thanks a bunch!

I wasn't thrilled with the hearing aid I had about 15 years or so
ago--it was merely okay. But I love the digital aids I have now for the
bad ear (Oticon Digifocus, six years old, so not the latest
technology). It really does pick up speech, although I'll be the first
to admit that I rely on visual information far more than a hearing
person would--I'm no lip reader but I do pay close attention.

Good luck!