live examples of hearing loss.....

[Windsong]

HI!

I thought I'd send in a link to examples of hearing loss.

I myself now have "profound" loss in my An ear and found out I have mild to moderate loss in my other ear. (reason for the right one not known at this time, yet.) But it explains why i no longer have been watching tv (too frustrating with the "gobbledygook sounds")....

The live examples on this site defintiely demonstrate how different types of hearing loss affect us in different situations etc.

Hope it comes through.. click on the different types.

http://facstaff.uww.edu/bradleys/radio/hlsimulation/

Windsong.

[nancyann]

Windsong:  Thankyou for this.   The speech with the people talking in the background is similar to what we go thru with SSD.
                 I end up sticking my finger in my ear during loud meetings in small rooms.
                 Very interesting indeed !!!!!

[Lorenzo]

Perfect!!!  Thanks Windsong, just what I needed to convince some people of what this is really like! Wonderful!
Sorry to hear about your right ear trouble...
Ciao
Lorenzo

[Windsong]

Glad to be of help.

I've moved through the various levels over the last 6-7 years i guess while the An was growing and I didn't know that. I would like to add that after my fsr treatment i DID have improvement in the hearing in the An ear, enough to thrill me at hearing my a/c while sleeping on the good side;  being able to reduce stereo volume to half;  being able to hear dial tone on the telephone again etc. (even though serviceable hearing was not there for conversation on that side. I am not sure what has caused the recent change in my good ear but of course I will be pursuing that. In the meantime my doc has suggested the other day after some hearing tests that I try a hearing aid in the useable ear. I pushed the thought away at the time but am now thinking i must do "something" so will be checking all that out. I guess I have an mri coming up now too. Sure hope it isn't a second An. I am a bit unnerved by all this. Has anyone else had hearing loss in their second ear (good one) and it hasnt had anything to do with having an An?

I hope the link above helps anyone else too if only to let others know hey, this is what the hearing is like with a loss like this....

Cheers all,
Windsong

[okiesandy]

I have posted and posted about hearing loss in my good ear. I was fortunate to find a neurotologist that suspected AIED from the very first. I was blood tested and found to have AIED and also after two years it was also decided I had cochler hydrops (a form of meniers disease without vertigo).

One of the markers that you may look for is hearing loss in the low range. That is one of the signs. AIED can cause a sudden loss of hearing or a slow loss of hearing. I was to told by two neurotologist and House Ear that blood tests should be done to rule out AIED before anything else considered. Once the hearing is gone it is to late to treat. Do not hesitate or allow a doctor to tell you they do not think that is what you have. Especially if you have any other autoimmune diseases or anyone in you family does. Too many people lose all hearing because the doctors do not act fast enough.  Also there is a small percentage of people that have sympathetic hearing loss. Doctors think about 6% of AN patients lose hearing in the good ear for one of these reasons.

Have the doctors tried steroid treatment on you? That is the treatment of choice until blood tests come back. It takes about two or three weeks for the tests to come back.

Good luck,

Sandy

[Windsong]

Sandy,

What blood test did you have please for AIED?

I was tested for ANA count a couple of months ago (lupus or sjogrens etc) and a closer look was taken at some other anti nuclear counts. The results didn't cause any alarm though. Is that the one you mean? A rheumatologist looked at that.

After the hearing test my ear doc did mention the low frequency and menieres possibility in one sentence. I asked about using cirprodex as i am doing that once a week anyway but he said it wouldn't help now.

My An ear is a total loss now high frequency, the other ear (the new loss) is some low frequency now and high frequency. My doc for ears is a neurotologist. He also operates on Ans and does things like cochlear implants and such. And he has a lot of experience. I am nervous though about losing more in that new ear. Tv continues to be garbled. and both ears ache and feel stuffed.

I'd hope that he entertained the AIED possibilty?? how conclusive is that blood test?

big thanks,
Windsong

[okiesandy]

The blood test is not 100% conclusive.

I will have to look up what they did. I do know the blood was sent to Immco Diagnostics. You can google them and there is some information on the blood tests there. As far as I know there are only two places that specialize in these blood tests. The first doctor I went to was quite willing to just let me go deaf after the first round of steroids. I had to push. That was two years ago.

You might pull out your blood tests and see if they did a CRP if it is elevated that is one very small clue. I will look when I get home and tell you exactly what all the tests were. The lab did the basic diagnosis. I know ANA was one of them. My results are in the very low range of tests. Low or not my hearing is a mess. None in the AN ear and high range gone and low the fluctuates.

I went to a Rheumatologist and he simply told me that I more than likely knew more about it than he did. If I had have relied on him to diagnose it I would still be waiting. He said he has only seen 5 patients before me with AIED. I was tested for lupus, limes, and a multitude of other things. They all came back neg.

This is a frustrating journey.

If you do have Cochlear Hydrops you need to go on a very low salt diet. 1000 to 1500 mg per day. It is so rare that a patient has a AN, CH and AIED the doctors can't even comprehend it. I sure haven't found anyone else with all of them.

I will let you know more when I get home this evening.

Sandy

[Windsong]

Sandy,

You have all three? that is a rairity i would guess. What treatment are you getting for it?

yes,  I watch the salt. I have all my life. I rarely buy any or use it and when i do maybe once  or twice a month it is sea salt. I rarely use "processed foods"... most all is fresh and not ready made.

As for the ANA count, it's been flagged on most reports for the tests I've had for the last decade ( though sodium is below the normal low).

Can't recall about  crp but i know i have the last lab report somewhere.

Interesting that some docs think that a sympathetic response can be there in  the second ear after the first one goes. Not common though i hear.

Let me know what/how you are dealing your CH and AIEd? Does your hearing fluctuate a lot?

W.

[ixta]

omg Moderate High Frequency Hearing Loss in BackgroundNoise  is exactly what I hear at parties and loud gatherings, a mirage of noise squished together.

[okiesandy]

Windsong,

On my first test the AN (HEp-2) A was positive at 160 find speckled (that is considered low according to Dr. Brackmann)

ANA (mouse kindney) neg -40

Anti 68kD (hsp-70) positive

They did many more tests and all were neg.

Last summuer I was tested for more things.

Sed rate was 47 should be less than 30

DNA antibodies was a false positive what ever that means

CRP was 4.86 (very high) should never be over 3 and 1 is good

C0mplement component C3 180 should be 75-161
Complement component C4 was 50 should be 16 to 47

Conclusiion on last test was not sjogrens, vasculitis, not lupus

Immco Diagnostics sent serology comments that were interesting. They are long just such as anti-collagen !! occur in 22% of patients with idiopathin SNHL, 30% of patients with sudden deafness and 67% of patients with Menier's disease.  If you have a fax machine I would be happy to share all of them with you.

For almost two years I took a hearing test every month or two. I have learned when I will have a large drop in hearing. I test almost daily on a site for Floyd Hearing aids that offers on line hearing test. With a set of good head phones the test is pretty accurate from 250 to 2000 range. Now when I notice my hearing drops I immediately go on 60 mg of prednisone with taper. It is the 28 days HEI suggests. This is used for AIED and Menier's hearing loss. The problem is getting the doctors very interested in helping before total loss. Dr Brackmann said you don't lose your hearing with out a reason. Even though I decided not to have surgery with him he was a ealth of information. He also told me they had a few patients that developed AIED after surgery maybe 2 or 3 to his knowledge.

My neurosurgeon does not think I lost my hearing because of the AN. She thinks AIED. A year before the AN was diagnosed I had only 60% hearing in my AN ear. Shrugged shoulders, age, loud noise etc suggested and nothing done.

I do email a lady with AIED and CH she has had them for about 10 years. It has been a real battle for her. She had to go to several doctors before a true diagnosis was made. Unfortunately she lost all hearing in one ear and a lot of hearing in the other. She will go to HEI in April to see Dr. Derybery the AIED and Hydrops expert. I am waiting and if she does will I will go.

Last summer it was suggested that I go on Cytoxan a chemo drug. I passed for the time being. I will save that as a last resort.

Yes the hearing in the only hearing ear fluctuates. As of now it is good. It can drop 30 db in a matter of days. In the deaf ear it was a slow process.

Let me know if I can help you.

Sandy