My case is turning up some contradictory test results (or so I think), and I'm wondering if anybody here has experienced a similar situation or has an idea of what might be going on.
Last year (at 29yrs old) I sought a hearing test after feeling like I could not hear well in my left ear. There is no pattern of hearing loss in my family. A mild-moderate conductive hearing loss was found (worse from low-mid frequencies). I was told I had otosclerosis and given the option of surgery, but I opted for a hearing aid as a start (my insurance covers them, thank goodness). The results from that first hearing test were recorded by hand, so all the doctor got to see from the tympanogram was that both ears were "Type A", left ear lacking an acoustic reflex. After feeling like my aid was no longer closing the gap, I went back for a follow up this week, and my loss is now classified as moderate (45-50dB). This time I got to see a computer printout of the full test, including the tympanogram, and I was shocked to see a HIGH compliance in my bad ear. It is still at normal pressure (Type A) but the compliance is 2.3ml, compared to 0.8ml in my normal ear. Acoustic reflex still missing in bad ear. The ENT, who was not the same doctor I saw the first time, did not say anything about the result and, really, seemed happy to take the last doctor's diagnosis without much question. My understanding is that, if anything, otosclerosis would normally increase tymp/middle ear stiffness, not decrease it. It wasn't until I got home and really studied the report that I noticed the high compliance, so I emailed the doctor to raise the question and ask for her thoughts. She basically said that they see all kinds of variability in the presentation of presumed otosclerosis (doesn't that sound like "well, we assume it's otosclerosis and if we're wrong and find out in surgery, so be it"?), but to address my concerns she is willing to refer me for a CT scan to look for other middle ear pathologies. She reiterated she did not see anything wrong with my eardrum, which matches what the first doctor observed. He spent quite a bit of time looking at it and showing me on the monitor, so it seems safe to assume they're correct on that front.
I will do the CT because at this point I think the more information the better, but I don't really know what to expect. Everything I'm reading says that the high compliance is more suggestive of a dislocation in the ossicle chain than otosclerosis, but at the same time they say that a dislocation typically presents with a maximal conductive loss of 60dB. Has anyone here had high compliance with a surgically confirmed case of otosclerosis? If it's a dislocation, what kind of outcome might I expect from surgery? I don't even know if a surgery would be covered by my insurance thanks to a line in the fine print about surgeries for hearing loss not being covered. I assumed that meant no way, but a insurance rep from the company said it's still billable and it couldn't hurt to try with a good "medically necessary" argument. I guess I'm just nervous, feeling in the dark and frustrated. I want to get a second opinion/see a different doctor once I have the CT results, because this latest one didn't leave me feeling very confident. I like to have all of the available information discussed/addressed, and she obviously failed in that regard.
Anyway, if anyone can relate or commiserate or offer insight I'd greatly appreciate it! Sorry this ran on a long while!
I have bilateral otosclerosis which was not properly diagnosed for over 10 years. I had two CTs scans fives year apart, and both times, the radiologists missed the otosclerosis. It was only a very smart neurotologist at Georgetown University Hospital that went over the CT scans himself who discovered the otosclerosis and told me that I had a condition that was correctable by surgery. That was a great day in my life, let me tell you. Anyway, my point is that most radiologists can't really diagnose inner and middle ear problems, and you'd be wise to get a DVD with the scan on it and cart it around to several doctors before you accept a diagnosis. Look for a neurotologist who works in a teaching hospital because they are more skilled at the diagnosing infrequent problems than general ENTs.
Thanks for the heads up on the CT reading, Fantine. The doctors I have seen so far are, actually, at a prominent university teaching hospital. Also, I happen to do bone-related research and will want a DVD of the CT for my own perusal if nothing else, haha. I'm much more experienced at assessing scans of long bones (femur, tibia, etc), but with a text book or two I think I'll be able to pick my way through the scans of my own head if need be.
I think because my hearing loss is clearly conductive they have been quick to give the otosclerosis diagnosis without any CT confirmation. Did you really never get diagnosis of otosclerosis until it was found on the CT?
Did you really never get diagnosis of otosclerosis until it was found on the CT?
Nope. The first ENT I spoke to did say that my audiogram indicated that I had a bone gap, which is why he sent me for the first CT scan. But the radiologist's report eliminated both otosclerosis and superior semicircular canal dehiscence (I didn't have symptoms of SSCD in any event), so I was told that I had a mixed hearing loss and advised to get hearing aids. When I developed tinnitus, another doctor sent me for a second CT scan, which was also negative. It was only later when the Georgetown neurotolgist looked at the scans himself that he diagnosed me with otosclerosis and advised me to get a stapedectomy. I had the first one in April 2011, and was going to get the other ear done this April, but other health problems caused me to postpone the second surgery. I now have normal hearing for my age (56) in my surgically corrected ear.