I am going to prepare a supplement to add to this post when I have more time. I am posting tonight because I am trying to refresh my research and information concerning these topics, and also to share my information with those who may find it helpful. Another reason I am posting, to be honest, is that I have noticed more than a few statements in this area of the forum that I don’t think are accurate, or that are not written in a technical way and that could give misimpressions to people trying to learn about these issues. This disease/area of medicine is complex and highly specialized.
I am 50, and I was diagnosed with otoscerosis at 30, had R stapedectomy in 1992 (Dr. Ronald Hoffman, NYU), and R revisions in 1993 (Hoffman again) and 1995 (Alan Austin Sheer), and then had L stapedectomy in 1998 (Mark Levenson, who is now in Saratoga Springs, NY). I will post more about my surgeries at a later time. My advice to anyone who may be a candidate and even thinking about it is to select one of the few doctors in this field who is at the top of the group of stapes surgeons and have all of your questions answered by that doctor. Do NOT rely on anything but the highest level of professional advice. I consider Dr. Levenson to be among those doctors, and I assume that Dr. Lippy and certain others mentioned in this forum are also in that category.
My 1995 and 1998 surgeries were successful and I enjoyed much improved hearing for several years. Some higher frequencies dropped after surgery though, and after several years there was a mild drop in hearing over time. I began to wear hearing aids in 2004 solely for higher frequencies. Since that time there has been a gradual continuous loss, and the loss has accelerated the last couple of years. It is of a mixed (both sensorineural and conductive) nature, and the doctors say that my tests probably show better bone (sensorineural) hearing than I actually have. They judge this with the tuning fork tests - if I am not hearing the fork on the mastoid bone a LOT louder than regularly through my ear, its unlikely to be a primarily conductive issue.
Before and after my surgeries I visited many doctors for second opinions and help with various issues and received a lot of information and advice. I have seen most if not all of the top people in NY City at one time or another. (It seems there are way fewer doctors in NY City now than there were before who truely specialize in this area.)
I have had tinnitus and have used several treatments for it but for the most part it has been manageable. I’ve taken decent amounts of fluorical at various times, and for the last year have taken a high dosage (up to 3 tablets a day). My vitamin D levels dropped and my general doctor asked me to take more vit D.
Because of the changes in my hearing I have posted below both my 2010 (still in my signature) and 2011 (added at bottom of post) test results. I am fairly certain that my hearing is worse now than it was in July of this year when my last test was done.
I am a musician and very attuned to my hearing. I also love concerts and have attended more than a few large loud ones but try to use protection if it seems too loud. I have a good audiologist who tells me that I tend to notice slight changes much more than most people. Also I am a lawyer and generally good with researching and understanding technical language and concepts, and have done lots of reading about these issues.
I have gone to the power mould set up with my oticon hearing aids and I use a blue tooth streamer to make listening to the TV easier to comprehend and more enjoyable. I am starting to have more trouble with phones and this technology will help with that as well. I have lots of information and advice about hearing aids but will post that in the appropriate section of the forum.
I am seeing Dr. Levenson next week and will likely have more to post in the coming weeks. Feel free to reply or PM me in the meantime, that’s all I have for now.
July 2011 results:
0250 L-35 R-35
0500 L-35 R-30
1000 L-35 R-35
2000 L-45 R-60
4000 L-85 R-95
8000 L-85 R-95
SD L-96% @ 35db
SD R-99% @ 40db
Oticon Agile 2010-2011
Oticon Delta 2007-2009
Resound Air 2003-2007