Robert.Pozner@f501.n202.z1.fidonet.org (Robert Pozner) (08/10/90)
Index Number: 9653
[This is from the Silent Talk Conference]
I have advanced bilateral otosclerosis of thirty years duration. I
also have two teenage sons. I know the disease is hereditary. Is
there any diagnostic method to determine if my sons will develop the
disease or is there any method to determine if a middle ear
structural change is occuring before actual hearing loss?
Thank you,
Bob Pozner
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!202!501!Robert.Pozner
Internet: Robert.Pozner@f501.n202.z1.fidonet.orgRobert.Pozner@f501.n202.z1.fidonet.org (Robert Pozner) (08/23/90)
Index Number: 9941
[This is from the Silent Talk Conference]
When cornered and in ddoub doctors, as a group, use the plural in
the explanation. "We think that is caused... etc." Never will you
hear;"I think" or "It has been my experience." They are probably
taught this response in medical school.
I have three sons, the oldest is twenty-six, and none have any
hearing problems at this point. Hopefully mine is an isolated
incident, however, my grandchildren could get the gene.
I will attempt to comfort you in your quest for knowledge concerning
your hearing disablity. You will never be completely deaf! The
quality and quantity of your hearing will diminish as a function of
time but you will always have some hearing although the necessary
amplification will cause gross distortion. You can live with this.
The quality of life is still very good even with poor hearing.
Glad to see you are back in the mainstream of BBSing with access to
this echo...
Keep the faith,
Bob
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!202!501!Robert.Pozner
Internet: Robert.Pozner@f501.n202.z1.fidonet.orgWayne.Silsbee@f222.n105.z1.fidonet.org (Wayne Silsbee) (08/28/90)
Index Number: 10003 [This is from the Silent Talk Conference] > When cornered and in ddoub doctors, as a group, use the > plural in the explanation. "We think that is caused... etc." > Never will you hear;"I think" or "It has been my > experience." They are probably taught this response in > medical school. That may be a tool to help partially alleviate the fears of the patient. In other words, the doctor isn't taking a wild stab in the dark--there is at least some collective basis for that thinking. TTYL Wayne -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!222!Wayne.Silsbee Internet: Wayne.Silsbee@f222.n105.z1.fidonet.org
Vixen@f11.n203.z1.fidonet.org (Vixen) (08/28/90)
Index Number: 10004
[This is from the Silent Talk Conference]
Hi Robert,
ROBERT POZNER> When cornered and in doubt, as a group, use the plural in
ROBERT POZNER> the explanation. "We think that is caused...etc." Never
ROBERT POZNER> will you hear: "I think" or "It has been my experience."
ROBERT POZNER> They are probably taught this response in medical school.
Yes, I understand what you saying. This sort of attitude would seem self
protective on the part of the physicians. If they do not commit to a
diagnosis or prognosis, they may claim that they cannot beheld accountable
if they are wrong in their "guesses!" I have pretty much experienced this
same situation while dealing with more than one physician.
Although, in fairness to my ear surgeon. I must admit that he does not seem
so inclined to distance himself to such a degree. He will say, at times,
"I don't know." But, he does seem willing to commit himself to his
understanding of my problems. As you may remember, even to the point of
giving hell to both Voc Rehab and the Hearing and Speech clinic when they
were arguing over who was going to pay for my new hearing aids and other
toys. So, I think perhaps, my ear surgeon is an exception to the rule and
that when he tells me that "he doesn't know", that he is being quite
honest with me.
ROBERT POZNER> I have three sons, the oldest is twenty six, and none have
ROBERT POZNER> any hearing problems at this point. Hopefully, mine is an
ROBERT POZENR> isolated incident, however, my grandchildren could get the
ROBERT POZNER> the gene.
That is much the same as my situation. I have two children, son and
daughter. My son will be eighteen in September and my daughter will be
twenty one in November. So far, they show no signs at all. I do not have
any grandchildren (yet) but your point is well taken, since I obviously
inherited the gene from my maternal grandfather, which could indicate that
the gene likes to skip generations.
I do not want either of my kids to have this problem, but I like to think
that I, as a visually and hearing impaired person, set a good example for
them. They can then understand that physical impairment and disability
does not mean an end to the "joy of living!" Of course, we all deal with
the same difficulties in our own ways.
ROBERT POZNER> I will attempt to comfort you in your quest for knowledge
ROBERT POZNER> concerning your hearing disability. You will never be
ROBERT POZNER> completely deaf! The quality and quantity of your hearing
ROBERT POZNER> will diminish as a function of time but you will always
ROBERT POZNER> have some hearing although the necessary amplification will
ROBERT POZNER> cause gross distortion. You can live with this. The quality
ROBERT POZNER> of life is still very good even with poor hearing.
Yes, the information you have shared with me regarding my Otosclerosis has
always been useful and correct, and it does help when you know what you are
dealing with! The moreso, when it comes from someone who has been or is
going through the same thing!
As for the disorder (my surgeon told me to stop calling it a "disease!"
Hehehe!) my doctor says pretty much the same thing, in that by itself, I
would never lose so much hearing that I probably could not continue to use
aids and amplifiers to hear to some degree. However, in my case, I do have
some complications compounding the problem and so I face the possibility
of a faster and more profound loss than I would from the Otosclerosis
alone. This is about the only area where I will get an "I don't know"
from my ear doctor.
At present, I wear hearing aides on both ears and also use an amplified
hearing aid compatable telephone and an ALD for selective listening. At
home, I can talk with someone and hear a lot of what is being said with
only my hearing aids. But if someone turns on the radio or television, or
starts talking, I lose it all. My hearing aids alone, do not let me hear
conversation, out of doors or in many social settings away from home and I
need to use an ALD with my hearing aids for conversation.
Yes, I know what you mean about distortion! I often tell people that much
of what I do hear, sounds like I am hearing through a cheap radio!
My biggest scare Robert, was just how quickly I went from being diagnosed
as someone with a significant loss to where I am already. I was not at all
prepared for that fast and severe a drop in my hearing levels. But, I am
still hanging in there.
But, yes, I believe you. I am sure that even with a profound loss, that
the quality of life can still be great. For one thing, there are plenty of
totally deaf peope who are happy and enjoying their lives! Also, the real
quality of life is probably whatever we are wiling to make of it despite
our disabiities and impairments. Although, it is still nice to be
reassured!
ROBERT POZNER> P.S. What are ALD's ?
An ALD is an "Assistive Listening Device", such as a PocketTalker, or a
Phonic Ear or FM trainer device.
Presently, I have a PocketTalker, which can be used either with its own
earphone or with a loop, putting your hearing aides in T position. The
clinic is trying to get me a good FM trainer (mucho more expensive than
the PocketTalker!) as the PocketTalker, even using it with a loop, is not
all that effective for me now. The PocketTalker is what I use for
selective listening. I don't know how to expain just how the loop works to
you (maybe Jack O. can explain better than I!)
ROBERT POZNER> Glad to see you are back in the mainstream of BBSing with
ROBERT POZNER> access to this echo...
Thank you Robert. It is nice to have the helpful support that you and so
many others here have given me while I have been dealing with all of this!
Never worry about me being too far away!! ABLED and SilentTalk are my
special havens!
Keepin' the faith!
. Vixen
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