I am conducting a poll in order to find out how common is the presence of cochlear otosclerosis to sufferers of the disease.
1)How many of you with otosclerosis have also a degree of sensorineural loss?
2)Could you indicate when was your latest audiogram and how much nerve loss you had then from each ear (in DB in various frequencies)?
3)Please compare your latest audiogram to one you had at least ten years earlier. Is there a drop in the bone curve (sensorineural) and how much is this (in DB in various frequencies).
Thank you for your answers. I hope we can come to some conclusions regarding the progression of this desease.
I think it's only the three of us (You, caz and I), so you;ll only get numbers from the two of us and caz judged her stapedectomy a failure because of extensive bone proliferation.
So you'll have only ME as your poll...LOL
I'm having an "after" audiological evaluation tomorrow.
Did you see my finale on your "TMJ or Otosclerosis" post. My 24 year ago "done" ear hasn't changed much...perhaps 10 db worse in the upper registers. Little change in midrange since old surgery.
[This message has been edited by zip2play (edited 06-24-2003).]
I cannot believe that only the three of us have otesclerosis but anyway I would like to see how are your audiograms regarding the auditory nerve function. My audiogram in 94 showed a 10 DB nerve loss on both ears and all frequencies. Is this usual in otosclerosis or is it a lot?
My last audiogram from 2 weeks ago indicated almost no change from the left ear (I am talking about the bone curve always) and some deterioration of 5 to 10 DB in the middle frequencies from the right ear.
I want to know if that means that the oto is spreading to the cochlea or if that is usual. I would like to try the NAF treatment in order to stabilise my condition and then have the surgery.
When you have your audiogram today give me absolute numbers because you say that you have 10DB loss at the high frequencies but you do not say how much it is in absolute numbers.
With only a 10db loss, I'm amazed your doctor diagnosed otosclerosis....your hearing is quite good.
Or is that bone conduction only....how does that differ(db)from your conduction through your auricles (the normal way?)...in db difference.
With only 10db loss though mastoid, your results after stapedectomy will be SPECTACULAR (and you will need good ear protection)...As soon as my ear canal heals I'm going to have a pair made- the subways are unbearable.
My 1979 results confirming the oto was pretty much a 50db loss in each ear accross the frequency range with perhaps "spike" to a 30-40db loss at 2000hz. These are EAR NUMBERS.
My bone conduction was down 20-30 db (down 20 at 500, 1000, 2000hz).
So basically it was a difference of 30 db between "ear conduction and forehead conduction"
I hope I'm shedding some light.
edit: We were both posting at the same time.
Yes I agree that the 50- 60 db loss is a reasonable upper limit. Of course there are exceptions and anyone with extensive bone intrusion into cochlea, nerve and round window involvement might do somewhat worse than this. That 50-60 is in the ballpark- certainly MY experience. Remember though that coincidental sensoryneural loss can lower the upper frequencies (above 2000hz) considerably more.
[This message has been edited by zip2play (edited 06-25-2003).]
The 10DB loss is for bone conduction only. The air conduction (that is what I hear through the ear) indicates a 40-50 DB loss for the frequencies between 500 and 3000 Hz (where the conversations are).
I do not know where the bone curve stands usualy for the majority of the oto cases. I thought it should be to 0 DB when no nerve loss is present.
I wonder where the bone curve stands for the majority of the people my age that do not have oto.
I just want to rule out that the oto is spreading in the cochlea area. Because the damage from this is not reversible and it will continue whether one has the surgery or not.
My cochlears are both covered with oto - apparently the worst case ever seen by my consultant. I must confess I have not really taken much notice as to how much 'db' change I have - I simply want to know whether it has got worse or better when I have a hearing test. I don't really do the technical stuff! But last test showed a 5db improvement at certain frequencies and a 5db loss in another - so basically what I gained on one hand I lost on the other. The audiologist said that in a 'normal' (LOL) person that was a minimal change and would probably not even be noticed, but to someone with significant loss it would be quite apparent. This is true, because I was aware that SOME things I could hear better but others were worse. Really it just feels like it has 'changed' rather than got worse or better in any way.
To be honest, at the moment I really don't feel the Nafril has made any improvement but it is still early days. Have only been taking it for about three months so will see.
Cora - my understanding is that the normal process is to have the surgery THEN take the Nafril only if the surgery was less than successful. Maybe different in different countries? Have you had an MRI or CT scan showing the oto? I reckon if I had had that done BEFORE the surgery they would have seen how extensive it was and not gone ahead with it but just gone straight down the Nafril route.
Will try and get hold of my 'db' score anyway in case it is of any help to you. Incidentally, my tinnitus has not improved one bit, although in the last couple of days the left ear (the UN-stapedectomied one!) has changed tone and style of ringing - what is that all about then???!!
Ears! they're a bloody nuisance but useful for hanging jewellery on!
Here goes....I got the results of my second ear today....more later.
But I pulled the three tests of my hearing: one before surgery 1979, and 2 this month.
<My mastoid hearing isn't changed much at all and frankly I don;t quite inderstand the difference between masked and unmasked mastoid numbers. Suffice to say they haven't gotten bad and are measured only through 4000 hz.
Now the numbers you want to hear:
My hearing improvement results THROUGH the ear from May to June of this month in my newly stapedectomied left ear are as follows:
250 hz: was 60 db loss : today 15db
500hz: 65 db: 20 db
1000hz: 60 db: 30 db
2000: 50db: 30db
3000: 60 db: 60db (I wonder why??)
4000: 95 db: 70db
6000: 85 db: 60db
8000: 100 db: 75db
The old stapedectomied right ear has a sllight advantage over the left in the low frequencies (maybe 10 db avg) but the new one is a tad better in the high (though my age is apparent in the neural loss at those high frequencies. At the time of the first surgery the right was the slightly better ear.
I'll be curious to get an audiologal test in 6 months, when everything is healed....I SWEAR that in spite of today's test, the left ear HEARS better than the right.
I firmly say that anyone with otosclerosis is foolish not to try stapedectomy in at least one ear (Cora)- you won't be sorry.
Caz, I pray that you can get that bone hardened and flaky or whatever they are trying to do such that you can have a successful stapedectomy on your other ear...it's a true gift from GOD....and from an atheist that's high praise indeed.
My doctor said the main reason for failure is an oto overgrowth of the ROUND window....which is the cochlea's vent mechanism. Obviously if the prosthesis is to vibrate the fluid behing the oval window and the fluid has nowhere to vent it's pressure, NO VIBRATION...like a snare drum with one side tightly pulled "skin" and the othe made of concrete.
He said it will show up on MRI beforehand.
I detemined my left ear was shot anyway without surgery so "go for it" without the delay of an MRI.
I asked if the round window be freed if frozen....he said NO!<sad>
[This message has been edited by zip2play (edited 06-25-2003).]
You have certainly improved the frequencies between 500-2000Hz (where the conversations are)by 20-35 DB. That is why you are hearing a lot better. Did they bring your air curve close to your bone curve ? The surgery closes the air-bone gap. The higher you can go is determined by your bone curve. Thanks for the input.
I am looking forward to having the numbers from you. When were you diagnosed and how did the oto progress through the years.
I was diagnosed ten years ago and for the last 4 years my condition remained stable. (I had only a 5 db loss at 3000Hz from both ears).
But in the first 5 years I experienced a great loss.
I had visited several ENT's then which all had different opinions. One told me that he could stop the process with Sodium Fluoride but the others did not think so. The benefits from the use of sodium fluoride are not widely accepted. I remember that I took it for a while but then stopped. You have to take it for 18-24 months to see the results. It does not improve things but it stabilises the oto (that is what they say the doctors who believe in it).
From my experience and from what Roger said the oto progresses fast in the first 5 years and then it slows down. I am having an appointment with a doctor on the 7th of July and I will ask him if I can take the Naf in order to preserve my situation. If I am convinced that it remains stable for the next 5 years then I will have the operation. I am not sure if I will be satisfied with the surgery because I am currently using hearing aids and hear 100% with them.Of course I hate them because they destroy my looks.
Surgery got me within 5db of the bone conduction all the way through 2000hz and within 15db
at 3000. Hey, you missed my 45 db improvement at 500hz....hmmm, I wonder what primary tone that is??? I'm gonna look that up!
On the progression matter. I think I can shed some light logically. The otosclerotic condition may indeed progress though one's life at some pace or another BUT what is noticed and measurable is precisely ONE event the spot-welding of the stapes to the oval window imobilizing it. Here's the cruncher which you probably already know: Ready for it!!!! Here comes! Depending on your monitor size the stapes is probably close to this typed letter in size and shape: D
Mind boggling isn't it? How much bone would be required to paste the two corners of the D down.
So though otosclerosis may proceed, it is ONLY the event of pasting down that D that is usually of consequence...and even THAT takes a couple years to accomplish....so bony growth does INDEED progress at a "snail pace"...or slower, a "glacial pace."
Can your MRI or CAT scans show whether the ROUND window of the unstapedectomied, or even the stapedectomied ear was frozen by oto?
Here's something to ponder....If you measure bone conduction and use it as a standard for cochlear integrity and function, what about having ONE VERY GOOD and ONE TOTALLY SHOT cochlea....what then can bone conduction measure? and is it relevant to compare the results of a stapedectomy to the bone curve...suppose it was done on the SHOT cochlea?
[This message has been edited by zip2play (edited 06-26-2003).]