Otosclerosis

[SRB1993]

Hi, I was diagnosed with otoscelrosis around two years ago now in both ears, but primarily effecting my left worse than right. In this time I have had two unsuccessful stapedectomy operations, one last week. There have been complications with my facial nerve being too close to where the surgeon wished to laser and then I was told the three bones were to 'wobbly' in one case. (Apologies for not knowing the correct terminology).

Obviously this is a huge setback for me, as they haven't been able to insert the prosthetic stapes and ultimately I'm still in the same position of having very poor hearing in my left ear and having the days of vertigo. I would like to know if anyone else has experienced this when undergoing surgery? The predominant information you find on the internet regarding this operation is positive stuff. Usually the operation goes successful and I haven't found any stories online where they've had a similar experience to myself. Can anyone share?

Although the two operations I have had by the same surgeon in London are unsuccessful I am now very determined to get a second opinion from another surgeon and see if he would be able to perform this operation. I don't want to fall on the first hurdle, and put all my faith into one surgeons decisions. I have videos of both the ops which I can share with others. The risks are high in my case, but I'm a twenty two year old male and would love to have clearer hearing without an aid.

Like I say, the main reason for this post is to see if anyone else has the same problem when undergoing surgery and if they've managed to overcome it. And also if they can recommend a surgeon? I have done research and am going to make an appointment with John Oates. I'd love to see some responses because at the moment I feel extremely desperate

 

[Brianna]

Hi, I was diagnosed with otoscelrosis around two years ago now in both ears, but primarily effecting my left worse than right. In this time I have had two unsuccessful stapedectomy operations, one last week. There have been complications with my facial nerve being too close to where the surgeon wished to laser and then I was told the three bones were to 'wobbly' in one case. (Apologies for not knowing the correct terminology).

Obviously this is a huge setback for me, as they haven't been able to insert the prosthetic stapes and ultimately I'm still in the same position of having very poor hearing in my left ear and having the days of vertigo. I would like to know if anyone else has experienced this when undergoing surgery? The predominant information you find on the internet regarding this operation is positive stuff. Usually the operation goes successful and I haven't found any stories online where they've had a similar experience to myself. Can anyone share?

Although the two operations I have had by the same surgeon in London are unsuccessful I am now very determined to get a second opinion from another surgeon and see if he would be able to perform this operation. I don't want to fall on the first hurdle, and put all my faith into one surgeons decisions. I have videos of both the ops which I can share with others. The risks are high in my case, but I'm a twenty two year old male and would love to have clearer hearing without an aid.

Like I say, the main reason for this post is to see if anyone else has the same problem when undergoing surgery and if they've managed to overcome it. And also if they can recommend a surgeon? I have done research and am going to make an appointment with John Oates. I'd love to see some responses because at the moment I feel extremely desperate

I don't know there's anyone on the forum who has likely had every surgery possible on the ears than I. The problem is I'm over 60, so the main surgeries occurred in the early 60s - 70s and continued but with minor things later.
I have bi-lateral otosclerosis as you appear to have as well.

Here's what I see but would you do an internet search of facial nerve risk or otosclerosis facial never risk? My
suggestion is to use a couple different search engines because the results will be different. The good news for you in this risk is my face (despite hearing this risk throughout my surgeries) is intact. Never had a problem. It was listed as a risk. This has changed, possibly and results may differ.

These days, info appears to shift risk to the type of surgery (see next paragraph).

I didn't see the old risk listed.
http://www.michiganear.com/ear-services-otoscierosis-and-stapedectomy.html (one example of a change -
swelling only is listed). I had all bones (stapes - not the footplate) replaced in both ears. One stapedectomy was done by the guy who created the procedure here. The surgeries didn't hold (but my ears from infections and all may have been too messed up for anything to hold).

Your stapes was replaced but I assume between your tympanic membrane connecting to the other two bones that move back and forth to the stapes to send sound along its merry way, that link connection dropped the stapes? If this is why the surgery failed, why? It might behoove you to understand what happened. (The ENTs could never get my connective chain working for more than days to maybe a week BUT that was in the very old days.) I had a friend who had her stapes replaced circa 1976 (she was @25) and it enabled her to get rid of her hearing aid - ONE SURGERY and it worked.

Last rule of thumb is I always check out where the ENT went to school and did his/her
residency. I don't know if that applies in the UK. I look for a doctor (critical ones) who has done
residency at a known-quality hospital. It takes good work ethic and grades and more to get into a good residency
program. It takes good scores to get into a decent medical school but the doc may graduate in the lower-end
of the class. Residency proof may reflect that.

I'll be monitoring this. I don't know if I helped you or not. My experience may be old but I know the basics
too well.