Hearing Loss/Hearing Aides

[snooz23]

I am wondering if any weggies out there have splurged on a hearing aid to correct the damage experienced in the ears. Sudden, moderate hearing loss is how mine presented. It did eventually move into the lungs as well but most of the sinus areas (besides the mastoids) stayed clear. Anyway I have been using a hearing amp. (the kind from Radio Shack that allow you "to listen in on your neighbors"--it was only $15). Since I was finally DX and the hearing I do have left is stable, my Cleveland Clinic ENT has given me the medical prescrip. for the hearing aids. I also experience a lot of ringing, roaring and buzzing in my ears/head at all times and it is my understanding some of this may go away w/ the aids. Just curious to see if anyone has first hand experience and the results they have found.

[Jack]

I would be interested in this too.
I was going to take the route of surgery and grommets, but the more I read, the more my suspicions are strengthened that they are not the answer for Wegener's patients.
I miss a great deal with my restricted hearing and tinnitus, probably hearing only half what is going on around me.

[elephant]

Back in 2008 I was experiencing severe hearing loss, tinnitus and ears feeling full. I was treated with antibiotics, thinking it was an ear infection. Had multiple hearing tests that confirmed I have damage to both ears. The ENT stated that I don't need hearing aids at this time. My ears did improve once they started the high dose of prednisone along with the cellcept. My ears still sometimes on/off get clogged ( reduced hearing). I have relatives who use hearing aids and they say it takes a while to get use to them, they work pretty good. The hearing aid are about two thousand dollars.

[Barbara1966]

Snooz 23,
I will let you know on Monday, I have an appointment with the ear specialist to discuss the hearing aid. It had been 5 months for me, from being diagnosed with WS, and 7 month with ear problems. I experience the same symptoms with my ears, and I'm using the amplifier also.
I'm not getting any better and also I have problem with the lungs plus non-stop cough, I'm not responding to the treatment the way my doctor would like me too.

I already have 4 treatment of Cytoxon 1245 mg every 4 weeks
Prednisone 40 mg per day
Sulfameth/tmp - 1 tablet every 3 days
Benzonatate 200 mg - 3 per day
Hydrocodone apap 10-325 as needed for cough
Calcium/magnesium/ vitamin D -3 tablets per day
Omeprazol 20 mg 1 tablet per day

Please e-mail me at [email protected] if you have the chance, I'd really appreciate it.

[Doug]

The ringing in my ears seems to be permanent after six years with WG and treatment. Did I read somewhere that antibiotics also can cause it, too? Sangye? Anyway, like Jack, my hearing is greatly reduced because of the ringing, but wiped out in my right ear by shingles and an ear infection it fostered.

[snooz23]

How have you guys adapted to not hearing things? If I don't have my amp. in I have to ask people to repeat things like I am 80 years old. Since I am not quite 40, it is frustrating for me not to hear, especially since I have a 2 children (ages 2 and 4) that I literally cannot hear crying sometimes. I think I have to make the splurge for these hearing aids (of course they are not covered by insurance, which I am so lucky to have). I guess I was hoping more hearing would come back. Does your hearing go up an down at this point? I have only been at this WG thing since April this year. I have not entered any kind of remission at this point (I don't think?) and am wondering if that stage may change my hearing again? Thanks for any input.