New here would like to get some advise

[Bogart]

Hi, i have been recently been diagnosed with Otoclerosis in both ears. i met with the surgeon and he suggests that i try hearing aids first. He doent want to do the operation. Im Im eager to get the operation as my hearing is decreasing and im worried . I have no problem with hearing aids its just they are only going to aid my hearing and wont treat my problem long term. Should i get a second opinion

[hamjor]

Sure, if you feel uncertain, a second opinion is warranted. Your concerns are valid, but your doctor probably is basing the recommendation on what the MD thinks is in your best interest given the MD's experience with other patients with this condition... and while nothing is certain, the MD may be making the best call in your case. Both courses of treatment are costly but surgery is moreso. Of greater concern: there are always risks of side effects and a negative outcome with surgery. For those reasons, otosclerosis is commonly treated with hearing aids rather than surgery early on, but the disorder tends to progress and often eventually requires stapedectomy surgery, as you know. But not everybody lives long enough and sees enough progression in that time to need it, so the more conservative course for currently mild cases is hearing aids + await developments.

Only an MD who has examined you and knows your medical history is qualified to offer medical advice specific to your case.

[Bogart]

Hi thanks for your reply. I just have a few more questions in relation to this condition. Does the hearing loss continue? Will it level out at any stage? What percentage of hearing would be expected to come back after surgery. Sorry for all the Q's!!

[zafdor]

If you're willing to spend a little time, read this post (http://www.hearingaidforums.com/showthread.php?t=5447)

[Bogart]

Thats a great post very informative. This whole condition is very new to me and im trying to come to grips with my hearing loss. Its having a huge effect on my working and personal life. Very difficult.

[ebayFANhearing]

I had the same experience you have, My doctor told me to try HA in the year 2000, they have been working fine for me most of the time. However I tried to teach in a class and couldnt do it, and I live a rather silent life as a translator. SO, I would say that it depends on your profession and work, if you work in a very demanding environment, like being a teacher or in construction, then surgery should be considered. If not then HA´s can almost solve the problem of otosclerosis. actually this is one of the easiest conditions to get a great benefit from hearing aids, even from analog HA´s.

[ebayFANhearing]

Hi thanks for your reply. I just have a few more questions in relation to this condition. Does the hearing loss continue? Will it level out at any stage? What percentage of hearing would be expected to come back after surgery. Sorry for all the Q's!!
Probably yes it will, wether you use HA´s or have surgery. I had a pronounced decline in 2006 , compared to a steady hearing between 2000-2006, and since then my hearing is static. Maybe the hearing jumps and there is a decline. I also remember the doctor telling me to try HA, since I could always have the surgery option, but should you loose your hearing in one ear you cant go back to use HA (The doctor said it is rare but it happens)

[SweetCheeks]

I can't see a surgeon turning down business unless he had a good reason.. Just to put your mind at ease get a second opinion from another surgeon not associated with your first.

[Overoaked]

Hi, i have been recently been diagnosed with Otoclerosis in both ears. i met with the surgeon and he suggests that i try hearing aids first. He doent want to do the operation. Im Im eager to get the operation as my hearing is decreasing and im worried . I have no problem with hearing aids its just they are only going to aid my hearing and wont treat my problem long term. Should i get a second opinion

Bogart,

I agree that you should seek a second opinion. I have otocelerosis and had 2 stapedotomy operations on my right ear (about 18 years apart) and one on my left. And I still have a moderate-severe loss (below, mostly nerve loss) and wear HAs.

Based on my experience and research, your decision should be based on three factors:

!. (most important) How much is your conductive loss? The very best result you can hope for is elimination of your conductive loss. Those of us with otocelerosis usually have a mixed loss, so you may (sooner or later) need HAs even with successful surgery. But if you have significant conductive AND nerve loss, HAs will be more effective if they have to address only the nerve loss.

2. The skill and experience of your surgeon. This isn't a straightforward standard procedure. Don't be shy about asking your surgeon questions like where and by whom were they trained, how many have they done, what procedure and prostesis type do they use?

3. What is your risk tolerance? If you research stapedotomys, you will see that there are occasionally problems. "Problems" range all the way from minor annoyances to major side effects to only partial elimination of conductive loss (my case for my right ear) to deafness (very rare).

Good luck!

(Hz) L(dB) R(dB)
250 40 50
500 55 65
1K 55 60
2K 60 60
4K 70 70
8K 90 100
L: 88% SDat80dB
R: 64% SDat85dB
L&R stapedectomy

[cheap hearing aids]

I just have a few more questions in relation to this condition. Does the hearing loss continue? Will it level out at any stage? What percentage of hearing would be expected to come back after surgery. Sorry for all the Q's!!

Please remember that an operation to aleviate the problems of the Otosclerosis may unintentionally have side effects, such as tinnitus. Also worth remembering that once the operation is over, the Otosclerosis will most probably start growing back again. It may take years but it will happen.
Take a look at bone conduction hearing aids as well as the more usual types.
Good luck with your thoughts and decissions

[ambrosia]

Hi, i have been recently been diagnosed with Otoclerosis in both ears. i met with the surgeon and he suggests that i try hearing aids first. He doent want to do the operation. Im Im eager to get the operation as my hearing is decreasing and im worried . I have no problem with hearing aids its just they are only going to aid my hearing and wont treat my problem long term. Should i get a second opinion

I have otosclerosis and cochlear otosclerosis. But I'm a pretty rare case. I first started losing hearing in my left ear when I was 20, this is very early, my mother has otosclerosis and I started losing my hearing before she did, and she has not had NEARLY as much loss as I have have. I did okay w/out HAs until I started losing it in my right, after I had my daughter when I was 25, and it was a rapid loss. I'm now 37 and I'm STILL losing hearing in both ears. So it's been 17 years for my left ear and 12 years for my right. From research I've done there is usually a prgession over about 10 years and then it levels off. My mother had her stapeds bone replaced last November. I know from her case that they generally like to wait until your hearing loss levels out because if you have the surgery too soon you'll just lose more hearing and have to have another surgery. Me? I don't have insurance so maybe someday I'll get have the surgery butI'll still have to wear HA for the nerve damage. Oh AND I have serious balance problems because of the damage in my ventricles....... which is just AWESOME!

[len811]

I had stapes replaced in one year about 21 years ago after wearing a hearing aid for a few years. I had second ear stapes replaced about 16 years ago - five years after the first. Only recently have I become aware of a hearing loss. I have not yet been tested, however, the loss (to normal voice, at least) is not as great as the loss before the surgeries.

[internetwinnage]

I have otosclerosis and cochlear otosclerosis. But I'm a pretty rare case. I first started losing hearing in my left ear when I was 20, this is very early, my mother has otosclerosis and I started losing my hearing before she did, and she has not had NEARLY as much loss as I have have. I did okay w/out HAs until I started losing it in my right, after I had my daughter when I was 25, and it was a rapid loss. I'm now 37 and I'm STILL losing hearing in both ears. So it's been 17 years for my left ear and 12 years for my right. From research I've done there is usually a prgession over about 10 years and then it levels off. My mother had her stapeds bone replaced last November. I know from her case that they generally like to wait until your hearing loss levels out because if you have the surgery too soon you'll just lose more hearing and have to have another surgery. Me? I don't have insurance so maybe someday I'll get have the surgery butI'll still have to wear HA for the nerve damage. Oh AND I have serious balance problems because of the damage in my ventricles....... which is just AWESOME!

I just found out I have otosclerosis in my left ear (I'll be 23 in 2 weeks), but I've noticed hearing loss since I was 18. I can't afford hearing aids OR surgery because my insurance doesn't cover either. I would probably pass on the surgery anyway, because I've heard that the prosthetic is only good for about 7-10 years and then your hearing starts to deteriorate again. Plus - who knows how much worse my hearing will get before it levels off since I've got it so young? But I think that I'd rather just be deaf than deal with multiple surgeries and side effects/complications... I don't know. This is all so new to me and I am so overwhelmed.

[ambrosia]

I just found out I have otosclerosis in my left ear (I'll be 23 in 2 weeks), but I've noticed hearing loss since I was 18. I can't afford hearing aids OR surgery because my insurance doesn't cover either. I would probably pass on the surgery anyway, because I've heard that the prosthetic is only good for about 7-10 years and then your hearing starts to deteriorate again. Plus - who knows how much worse my hearing will get before it levels off since I've got it so young? But I think that I'd rather just be deaf than deal with multiple surgeries and side effects/complications... I don't know. This is all so new to me and I am so overwhelmed.

I hate to say it, but you're probably in for a world of hurt :( I don't have much hearing left. I've pretty much decided to nevermind with the stapedectomy, I'll stick with aids for now, hopefully I don't lose much more in the next few years, because then I'll have reached the point where HA can't even help. I want to get a cochlear implant eventually.