Newbie - introducing myself and asking for advice

[minde87]

I am really happy to have come accross this forum. It is a wealth of information I have been soaking in since I started reading. I do find it a bit daunting at this stage though, I must admit. So I decided to join in and share my story.
I am 24. My hearing has been deteriorating for the past couple of years (it might have started earlier, but I must have coped with it without noticing); accompanied by tinnitus which has worsened recently. I was seen by two surgeons of otorhinolaryngology and both of them seem to be convinced it is mixed otosclerosis (both conductive and sensorineural hearing loss). One of them said he saw no point in operation because my air-bone gap was too small, whereas the other one suggested I consider one.
The only tests I had were audiogram and tympanometry.
My audiogram results came out like this (if I'm reading it right)

250hz L 35 R 40
500hz L 45 R 45
1k L 55 R 55
2k L 45 R 50
4k L 45 R 45
6k L 35 R 35
8k L 25 R 25

Results through the bone are better only in low frequencies (250k and 500k) by only 10-20db.
Two weeks ago I took my first hearing aid for a trial (Phonak) but still don't feel comfortable with it even though I had few appointments when the audiologist has been trying different settings and other models.

I would really appreciate help and advice on the following:

1) Do you think the tests I have had are sufficient to confirm mixed otosclerosis. Would I benefit from any other tests?

2) Is there any way to help my hearing or to slow down the process? The doctors I have seen could not give me any advice on this.

3) What hearing aids do you think I should try? I have been disappointed with the ones I have tried as they didn't make much difference in speech discrimination and they made high frequency sounds very sharp and echoing.

Any advice would be very appreciated.

[zafdor]

1) Probably not. Is there a history of the disease in your family?

2) Maybe. Read through all of the posts in this subforum and search out the discussions on flouride and biphosphonates. You will also find info on the Yahoo groups (http://groups.yahoo.com/group/otosclerosis2/messages).
Being only 25 years old, you want to do everything you can to prevent the progression of your sensoneural loss. It can lead to total deafness (sorry for the doom and gloom) in rare cases.

3) There are boatloads of people here who can give better suggestions then me. You might try posting in the digital instruments forum.


1) Do you think the tests I have had are sufficient to confirm mixed otosclerosis. Would I benefit from any other tests?

2) Is there any way to help my hearing or to slow down the process? The doctors I have seen could not give me any advice on this.

3) What hearing aids do you think I should try? I have been disappointed with the ones I have tried as they didn't make much difference in speech discrimination and they made high frequency sounds very sharp and echoing.

Any advice would be very appreciated.

[DocAudio]

1) Do you think the tests I have had are sufficient to confirm mixed otosclerosis. Would I benefit from any other tests?

2) Is there any way to help my hearing or to slow down the process? The doctors I have seen could not give me any advice on this.

3) What hearing aids do you think I should try? I have been disappointed with the ones I have tried as they didn't make much difference in speech discrimination and they made high frequency sounds very sharp and echoing.

Any advice would be very appreciated.

1) If the air-bone gap is only in the low frequencies and not the higher ones (1KHz +) then I'd be more inclined to think it's something other than Otosclerosis. Did they perform tympanometry which is where they put a little probe in the ear that changes the air pressure and moves the drum slightly? It would have told you if there was fluid present or not. A low-frequency conductive component/mixed loss I generally associate with some sort of fluid or congestion and not otosclerosis...but then I'm not the one with the medical degree either...

2. Not all hearing loss is progressive. If it is Otosclerosis, the bone growth could/is likely to continue and eventually result in a maximal conductive component (60dB) on top of whatever underlying sensori-neural loss you have. Surgery is always an option, especially when the conductive loss is large and a more significant benefit could be perceived by the patient. Additionally, whatever caused the excess bone growth in the first place will continue post-surgery and you could be looking at the same situation several years down the road again.Also, there are always risks to surgery and if you have a pair of hearing aids that is working well for you at that point, the possible benefit might not be enough to outweigh the potential risks. Sensori-neural hearing loss tends to be progressive, but not always. Annual monitoring of hearing is essential in cases like this.

3. 2 Weeks is not long enough, IMHO, to determine if the hearing aids are right for you. The first couple weeks, in fact, are the hardest ones because you will hear everything since you are unaccustomed to those sounds being as audible as they will be. Phonak Hearing aids I find are especially good at amplifying those noises and they tend to require a slightly longer adjustment time...they are a more aggressive hearing aid when it comes to picking up sound, in general. The reason they sound high/tinny is because you have more hearing loss in the higher frequencies and those will be amplified more than the low frequencies. Also, you aren't used to hearing those higher pitched sounds, hence why amplifying them sounds awkward. When I have patients who don't like the way the Phonak aids sound, I usually switch to Sonic Innovations which tends to be a quieter aid. My recommendation is to try them for the full month and if they are still unacceptable, ask to switch to a different manufacturer to see if it's any better. Remember, a hearing aid will not sound like your natural hearing...but it should at least make it so that speech is relatively clear and understandable.

HTH!

[minde87]

1) Probably not. Is there a history of the disease in your family?

2) Maybe. Read through all of the posts in this subforum and search out the discussions on flouride and biphosphonates. You will also find info on the yahoo.
Being only 25 years old, you want to do everything you can to prevent the progression of your sensoneural loss. It can lead to total deafness (sorry for the doom and gloom) in rare cases.

3) There are boatloads of people here who can give better suggestions then me. You might try posting in the digital instruments forum.

1) If the air-bone gap is only in the low frequencies and not the higher ones (1KHz +) then I'd be more inclined to think it's something other than Otosclerosis. Did they perform tympanometry which is where they put a little probe in the ear that changes the air pressure and moves the drum slightly? It would have told you if there was fluid present or not. A low-frequency conductive component/mixed loss I generally associate with some sort of fluid or congestion and not otosclerosis...but then I'm not the one with the medical degree either...

2. Not all hearing loss is progressive. If it is Otosclerosis, the bone growth could/is likely to continue and eventually result in a maximal conductive component (60dB) on top of whatever underlying sensori-neural loss you have. Surgery is always an option, especially when the conductive loss is large and a more significant benefit could be perceived by the patient. Additionally, whatever caused the excess bone growth in the first place will continue post-surgery and you could be looking at the same situation several years down the road again.Also, there are always risks to surgery and if you have a pair of hearing aids that is working well for you at that point, the possible benefit might not be enough to outweigh the potential risks. Sensori-neural hearing loss tends to be progressive, but not always. Annual monitoring of hearing is essential in cases like this.

3. 2 Weeks is not long enough, IMHO, to determine if the hearing aids are right for you. The first couple weeks, in fact, are the hardest ones because you will hear everything since you are unaccustomed to those sounds being as audible as they will be. Phonak Hearing aids I find are especially good at amplifying those noises and they tend to require a slightly longer adjustment time...they are a more aggressive hearing aid when it comes to picking up sound, in general. The reason they sound high/tinny is because you have more hearing loss in the higher frequencies and those will be amplified more than the low frequencies. Also, you aren't used to hearing those higher pitched sounds, hence why amplifying them sounds awkward. When I have patients who don't like the way the Phonak aids sound, I usually switch to Sonic Innovations which tends to be a quieter aid. My recommendation is to try them for the full month and if they are still unacceptable, ask to switch to a different manufacturer to see if it's any better. Remember, a hearing aid will not sound like your natural hearing...but it should at least make it so that speech is relatively clear and understandable.

HTH!


Thanks a bunch zafdor and DocAudio for taking your time to reply.

Zafdor, to my knowledge, there is no history of otosclerosis in my family.
I have heard before that Yahoo group is loaded with info, but I could not find it. I will have to give it another try.

DocAudio, one of the two surgeons I have seen performed tympanometry and, based on its results, excluded the possibility of any other underlying reasons apart from otosclerosis. The reason I have doubts is because the results through the bone are better only in low frequencies (250k and 500k) and only by 10-20db. Do you think this insignificant difference present in frequencies lower than 1khz is enough to confirm the presence of conductive component and mixed otosclerosis?

As my conductive loss is minor (if any?), I understand the surgery would not improve my hearing noticeably. As surgery carries its own risks, I guess, I would consider it only if it served as preventative means by slowing down the sensorineural hearing loss. (The doctor seemed to have suggested that the defect in the middle ear in the long run results in aggravation of sensorineural hearing loss). I am not sure though this applies to my case.

As for the hearing aids, I have most hearing loss in 1khz, my hearing is considerably better in the high frequencies. The problems I had with Phonak hearing aids I have tried so far were that they made high frequency sounds very sharp, echoey and tiring.
I have been trying out Siemens life 101 for one ear for the past week. I think I like it better that Phonak because Siemens mellows loud sounds slightly better. Would you suggest to start off with aids for both ears or does it make sense to buy an aid for one ear to start with?

[molly88]

hello... I am new, too and somehow I am in the same situation... please update me when you have the chance... I will try to PM you

[JW_in_VA]

I am really happy to have come accross this forum. It is a wealth of information I have been soaking in since I started reading. I do find it a bit daunting at this stage though, I must admit. So I decided to join in and share my story.
I am 24. My hearing has been deteriorating for the past couple of years (it might have started earlier, but I must have coped with it without noticing); accompanied by tinnitus which has worsened recently. I was seen by two surgeons of otorhinolaryngology and both of them seem to be convinced it is mixed otosclerosis (both conductive and sensorineural hearing loss). One of them said he saw no point in operation because my air-bone gap was too small, whereas the other one suggested I consider one.
The only tests I had were audiogram and tympanometry.
My audiogram results came out like this (if I'm reading it right)

250hz L 35 R 40
500hz L 45 R 45
1k L 55 R 55
2k L 45 R 50
4k L 45 R 45
6k L 35 R 35
8k L 25 R 25

Results through the bone are better only in low frequencies (250k and 500k) by only 10-20db.
Two weeks ago I took my first hearing aid for a trial (Phonak) but still don't feel comfortable with it even though I had few appointments when the audiologist has been trying different settings and other models.

I would really appreciate help and advice on the following:

1) Do you think the tests I have had are sufficient to confirm mixed otosclerosis. Would I benefit from any other tests?

2) Is there any way to help my hearing or to slow down the process? The doctors I have seen could not give me any advice on this.

3) What hearing aids do you think I should try? I have been disappointed with the ones I have tried as they didn't make much difference in speech discrimination and they made high frequency sounds very sharp and echoing.

Any advice would be very appreciated.

Follow up on zafdor's suggestion about flouride.