Author Topic: why am I so hard of hearing?  (Read 6023 times)

tlmdinger

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why am I so hard of hearing?
« on: January 26, 2007, 06:33:04 pm »
Hi my name is Tanya and I am 41 yrs old. I was diagnosed 3 yrs ago.  I had single dose radiation 3yrs ago but my An is still growing. Tough little bugger huh? I say little because in compaison to a lot of you my AN is small. Last MRI 1/23/07 it measured 11mmx4.2mm  But I am profoundly hard of hearing in both ears. right more than left.AN right side. I am in the medical prrofession and a mother of a beautiful 5 yr old. i wou;d really like to save or atleast keep my hearing but that has looked to promising. I currently wear 2 hearing aids. I hate them...any one else have bilateral hearing loss? anyone know how to go about learing sign?  Thanks for "listening" no pun intended.















Boppie

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Re: why am I so hard of hearing?
« Reply #1 on: January 26, 2007, 08:29:22 pm »
What type of aids do you wear, may I ask?  Also, has an AN been seen on the other side also?  Has your ENT diagnosed the cause of your bilateral loss?  More posters will be able to make suggestions with a little more information.  I am sure someone will point you toward a sign language site, but here we are...folks with ANs, pre treatment, post treatment, and waiters.  Can we help you?

tony

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Re: why am I so hard of hearing?
« Reply #2 on: January 27, 2007, 01:59:27 am »
I saw your note and two things come to mind
1) By all means learn to sign - it is a new language
But you may find lipreading is more useful in a speaking world
basically 99.9% of those you meet wont be able to sign
- but they do use the lips etc
I am 100% down one side and 50% the other
I find maybe 20% of all I understand comes from the lipreading
- they say its easier to learn while you have hearing
When I first attended classes - I was astounded to find
I was already doing it (more or less)
2) Have they investigated why the hearing is down both sides ?
a single AN in-of-itself is unlikely to cause this
might be worth a second look
Best regards
Tony

Timjk

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Re: why am I so hard of hearing?
« Reply #3 on: January 27, 2007, 07:32:31 am »
Hello Tanya.. I have NF 2.. Neurofibromatosis type 2... Have you been tested for this ?? One very prominent symptom is bilateral hearing loss caused by
AN's on both sides. I also wear hearing aids on both sides. My hearing loss is in the 50 to 85 % loss range,both sides... The hearing aids I am currently wearing are Phonak Micro-power.. They are one of only a couple that have the "speaker" inside the hearing canal as opposed to it being in the "behind the ear" section and sound being pushed thru the tube into the ear canal.. This makes for lower volumne having to be used,helping with the clairty of sound. Remember,hearing aids are nothing more than miniture PA systems. they have a microphone that receives the sound and a speaker that broadcasts it.
      I hope this has helped .. Please feel free to ask me anything you have and I will try to answer..

                     Tim
Surgery Feb.7th at Moffitt,Tampa. Removed right side AN 3.3 CM plus Chiari Malformation decompression.Second surgery Feb.23rd Ventricle Periphirial Shunt to correct CSF leak.. NO HEARING LOSS.. NO HEADACHES... GOD IS GOOD !!!

Dealy

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Re: why am I so hard of hearing?
« Reply #4 on: January 27, 2007, 09:52:19 am »
Tanya-Another Nf2 here with deafness in left ear from AN surgery 18 years ago and 90% in right ear currently in right ear. I have a tumor in that ear that recieved FSR radiation this past summer. What does you neuro say in records to the growth of your AN. Do they say anything about necrosis or is it just plain growth-period? If that is the case then the outlook does not look too promising for hearing retention. I know a lady on that has profound deafness in both ears and uses a hearing aid. She recently got a Cochlear Implant in the one ear. Once they are programmed right-I understand they do a pretty good job. I read where the Cochlear Impant can discern pitch where the ABI stem cannot. However witha CI the hearing nerve must be intack. I am opting to take a sign reading class since my hearing in the only ear is not getting better but worse by the day. Wish you well-hope you can resolve this issue. I tell my wife it is really scary to think that I may not be able to hear her oneday? I hope this e-mail does not alarm you-that is not my intent. However like me sometimes you just have to face reality and try to utilize the lastest medical means available to us, Ron

tlmdinger

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Re: why am I so hard of hearing?
« Reply #5 on: January 27, 2007, 04:54:32 pm »
thank you to all of you who took the time to repond.  No I have not been diagnosed with NF. In fact the left internal auditory canal on recent MRI is free of leison. MY ENT has no answer as to why I have bilateral hearing loss.....He just tells me to wear my hearing aids. Right now, I am wearing GN resound hearing aids. they are Ic type aids. and I'm not real fond of them. Is there any other Tests for NF? I try to lip read. are there clases for lip reading? Got to tell ya I'm very afraid and saddened that all I have to look forward to is being deaf or atthe very least more hearing impaired. makes me wnt to cry. it's difficult and embarassing being hard of hearing.
my family/friends can't and don't understand.  Oh as far as radiation goes....totally missed the tumor all togather so....my AN is just plain ol' growing. thanks again.





















Battyp

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Re: why am I so hard of hearing?
« Reply #6 on: February 03, 2007, 08:59:53 pm »
Howd they miss? 

tanya I did read that if I lose hearing in both ears that w/ cochelar implants I could hear again and it would lesson the tinnitus I have in both ears. 


tony

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Re: why am I so hard of hearing?
« Reply #7 on: February 04, 2007, 02:52:40 am »
To learn lipreading you do need a tutor who can literally
"speak with no sound" - usually best in tutor groups of 6-8 people
May come under "adult" or "further" education classes
I am sure you have an "Insitute for the Deaf" or similar
- they should know where to point you.
while you are searching for one you can start to practice
when you are home-alone watch the TV with the volume down a bit
in time you will concentrate on the faces/lips to
get the full meaning
good luck and
Best regards
Tony

 


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