dianaclary
01-06-2009, 01:44 PM
Boy, this has been one roller coaster of a journey so far. My 13 old daughter had surgery in October for what was to be a stapedectomy for otosclorsis. Instead the dr. found that it was her malleus bone that was fixed and the other bones were just fine so he "unstuck" it. It seemed like she could hear right after surgery (maybe wishful thinking on my part?) and then nothing. The dr. said that she needed time to heal but on her last visit he said that it didn't work.
Soooo.... there is another sugery where the malleus bone is amputed and a prothesis bypasses the area and goes to the stapes. But it makes a future stapedectomy much more difficult. Has anyone ever heard of this? I am been all over the net and haven't seen anything. He still thinks she might have otosclorisis but its very unusual for it to affect only the malleus bone. I guess I hate to start amputating bones and moving stuff around until we know what really is going on. If she does have otosclorsis won't it eventually affect her stapes? Or maybe a fixated malleus is all that it ever will be? Could her hearing loss be caused by something else? Its so difficult to get information--even her doctor is unsure of what is going on.
If anyone knows a good source of info, I would sure appreciate the post.
For now, we are getting her a hearing aid and taking a wait and see approach. I am so thankful that she will be able to hear with an aid but I would hate to overlook a surgical fix if there is one especially during her teenage years.
Even with all of that said, I am still very glad we elected to have the surgery even if it ultimately didn't work.
Thanks!
Soooo.... there is another sugery where the malleus bone is amputed and a prothesis bypasses the area and goes to the stapes. But it makes a future stapedectomy much more difficult. Has anyone ever heard of this? I am been all over the net and haven't seen anything. He still thinks she might have otosclorisis but its very unusual for it to affect only the malleus bone. I guess I hate to start amputating bones and moving stuff around until we know what really is going on. If she does have otosclorsis won't it eventually affect her stapes? Or maybe a fixated malleus is all that it ever will be? Could her hearing loss be caused by something else? Its so difficult to get information--even her doctor is unsure of what is going on.
If anyone knows a good source of info, I would sure appreciate the post.
For now, we are getting her a hearing aid and taking a wait and see approach. I am so thankful that she will be able to hear with an aid but I would hate to overlook a surgical fix if there is one especially during her teenage years.
Even with all of that said, I am still very glad we elected to have the surgery even if it ultimately didn't work.
Thanks!
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TXMommy27
01-06-2009, 10:34 PM
Sorry to hear your daughter's surgery wasn't a success, but you seem to have a great attitude about it! I don't know what I would do - have you considered a 2nd opinion? Just to possibly get more information?
I do hope you get more information - that can be the worst part, just not knowing what can be done. Your daughter will adapt well to the hearing aid, I'm sure - they are so advanced now! I was so thankful when I got my hearing aids to be able to HEAR - now I am thankful to hear w/o them after 2 stapedectomies (1 in each room). Maybe that is the best option for now - the possibilities should only get better for her as she gets older and surgical options get more advanced!
I do hope you get more information - that can be the worst part, just not knowing what can be done. Your daughter will adapt well to the hearing aid, I'm sure - they are so advanced now! I was so thankful when I got my hearing aids to be able to HEAR - now I am thankful to hear w/o them after 2 stapedectomies (1 in each room). Maybe that is the best option for now - the possibilities should only get better for her as she gets older and surgical options get more advanced!
dianaclary
01-07-2009, 02:28 PM
Thank you for upbeat response. She was so happy when she got the hearing aid yesterday that I almost cried. She is just amazed at what is going on around her. She is a little self-conscious but its one of those really small ones that you really have to look for to see. I told her it was like having to wear glasses and she said that wasn't really the same. She told me that having glasses wasn't as "different" as having an aid. I remember being 13 and being "different" is tough but 13 is tough no matter what. I think there are so many advances in medicine that who knows what good the future will bring. I really get so encouraged by reading all of the posts here.
In the meantime, she seems so much happier and I thank God for that.
In the meantime, she seems so much happier and I thank God for that.
TXMommy27
01-19-2009, 09:01 PM
I'm so glad to hear that she is happy with the hearing aid! Now that she has had a couple of weeks to adjust, how is she doing? I know that it FEELS more noticeable than it LOOKS. And always saying "Huh? WHat did you say?" or responding wrong to someone else is way worse than wearing the hearing aid. My problem even with the aids was with whisperers - I imagine that might be frustrating to a teenager, since they all whisper! :rolleyes:
Keep your options open - right now if the dr. doesn't know what the problem is, let her use the aids. If her hearing gets worse, or they develop a new treatment, then I would look into it. She is fortunate that she has options right now. Advancement in hearing aid technology seems to be moving at light speed, so she has good reason to hope for hearing without hearing aids sometime in the future.
And what was it my mom used to say when I was a teen? What doesn't kill you makes you stronger. Going through this experience will make her more compassionate and understanding of those who are different, and strengthen her character more than being "like everyone else" in middle school (although I am sure she doesn't want to hear that now!)
You should also check into available technology in her school. We have a child with hearing aids in our building, and his teacher wears a mike that can speak directly into his ear, while blocking out other noises - this is just one of the settings. My audiologist said all the new buildings in Allen are wired for this technology. You can check into this with your daughter's school and they will be very discreet.
Let us know how your daughter is doing! It can be hard, but she may be surprised how accepting others can be when they see that it's "no big deal"!
Keep your options open - right now if the dr. doesn't know what the problem is, let her use the aids. If her hearing gets worse, or they develop a new treatment, then I would look into it. She is fortunate that she has options right now. Advancement in hearing aid technology seems to be moving at light speed, so she has good reason to hope for hearing without hearing aids sometime in the future.
And what was it my mom used to say when I was a teen? What doesn't kill you makes you stronger. Going through this experience will make her more compassionate and understanding of those who are different, and strengthen her character more than being "like everyone else" in middle school (although I am sure she doesn't want to hear that now!)
You should also check into available technology in her school. We have a child with hearing aids in our building, and his teacher wears a mike that can speak directly into his ear, while blocking out other noises - this is just one of the settings. My audiologist said all the new buildings in Allen are wired for this technology. You can check into this with your daughter's school and they will be very discreet.
Let us know how your daughter is doing! It can be hard, but she may be surprised how accepting others can be when they see that it's "no big deal"!