View Full Version : Hearing Loss/Hearing Aides

11-14-2009, 02:09 PM
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.

11-14-2009, 08:02 PM
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.

11-15-2009, 01:44 AM
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. :o:):D

11-15-2009, 03:56 AM
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.

11-15-2009, 09:11 AM
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.

11-15-2009, 01:29 PM
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.:)

11-15-2009, 02:20 PM
Once you get close to remission sometimes your hearing comes back. Mine seemed better on high doses of prednisone. I'm on three drugs that lower my immune system and my hearing is better, but still have hearing loss. Hopefully you will get your answer with the ENT specialist soon.

11-15-2009, 02:53 PM
Thanks....that seems a bit encouraging to me. Maybe I should wait it out a bit more just to see if I get back to more functional hearing before I spend the money. I have only been on the combo pred./meth. for two months--is that even enough time to be thinking about a remission state? However, before I was dx. I was on pred. only since July. Various doses from 60mg down to 20mg. Currently I am at 35mg and tapering by 5mg/week--and my hearing really wasn't a whole lot better at the higher doses besides my main goal at this point is getting on a much, much lower dose of pred. I am just hoping my body holds out (I can't add on more side effects to my long laundry list of complaints from this drug...but then again I am never sure if it is the pred. or the metho. or the disease or the damage that I am left with).

11-15-2009, 03:34 PM
I understand where you are coming from. Give yourself some more time. It took over six months for my ears to feel better. :)

11-15-2009, 03:57 PM
I dont know about you but allergy symtoms have always been an issue for me. That includes hearing lose , or fluid in the ear. I use to take allerga180mgD but now because of my blood pressure I cant. the prim doc switched it to singular 10 mgs and nasacort. It helps to keep me breathing much better. Singular is also an asma med so I believe it is keeping my airways open. Sorry about the spelling. i beleive that the space bar is going too.

11-15-2009, 08:16 PM
My hearing loss is deffinitely due to inflamation of my eustation tubes and fluid build up. Things got even worse when I tried to lower my pred dose and I started to get ear aches too, but that has improved by returning to my original dose of 10mg.
I was a bit dissappointed with my visit to the ENT specialist. He did not seem to want to discuss the effects that Wegener's was having and only wanted to deal with me as a standard case - fluid problem = grommets for drainage. He could not see much further than that.
(It was an ENT consultant who nearly killed me through his misdiagnosis in the early days!)

11-16-2009, 12:58 AM
Jack do you have a ENT that has WG patients. I travel about four hours to see a ENT. He is really good. He even told me that going below 5mg of prednisone will worsen my sinuses secondary to the WG. So he suggested once I get down to 5mg of prednisone that I need to add a prednisone liq to my sinus rinse and that will keep the inflammation down in the sinuses. The last two ENT's wanted to treat me like a general patient. Jack how is the 10mg of prednisone working?

11-16-2009, 04:33 AM
Now that I'm back on 10mg there is a definite improvement so that's what I'm sticking with in spite of the side effects.

My regular appointments are with the Renal department who are involved with vasculitis research together with the Rhumatology team so they are all well clued up on Wegener's. The problem comes when dealing with other departments that I am sometimes refered to. Even though it is a huge teaching hospital, there is a lamentable lack of understanding when it comes to this disease.

11-16-2009, 07:11 AM
I was told by two ear specialist one local doctor one from Yale hospital that with correct medication hearing should be restored to the point that you do not need hearing aid, they sad it is expensive, but for me 5 month it is enough.

Imagine having two teenagers, they taking advantage of me and every time when I ask to repeat what they saying all I hear ( clearly) never-mine, but sometimes help to have a selective hearing with my husband.

I suppose, mama gone have a new ears for Christmas and for the kids - socks.

11-17-2009, 11:13 AM
My appointment was very discouraging.
First he asked me if I'm rich because we are talking between $2,000 to $4,000 per piece.
With "normal" case of lost hearing, the hearing aid will be permanent to the rest of the person life, with WG patient the hearing aid need to be changed every couple years, because of the every day changes we experienced we will have so many problems even with simple volume of the piece.
I did make an appointment for the hearing test and I will see what else they can say.

11-17-2009, 11:20 AM
Barbra, the hearing test will tell you if you have permanent damage to your ears, that what they told me. Good luck. Alot of hand raising, silent beeps to listen too and repeating words back to them. :)

11-17-2009, 01:10 PM
So frustrating.... I have a couple friends who are quite deaf and have hearing aids. Not only are the hearing aids expensive, but insuring them costs around $700 each (one-time payment). If you don't get the insurance, every time they break or need a new part you have to buy a new one or pay outrageous repair bills. Insurance doesn't cover them, even for the deaf. Isn't that insane??

11-17-2009, 03:24 PM
Sorry to hear the news Barbara.

That's what really worries me about the hearing aides...the expense and all the adjustments that may be needed w/ such an unpredictable, unknown disease. I mean we really cannot count on the next day or the next hour being the same right? We have to adjust to what comes our way each moment.

And thanks for the input about maintenance, insurance, etc. Sangye. I never thought about that......maybe there is a different option out there, something in between this cheap amp. thing and a hearing aid?

Since I do want to hear my children better and possible have a little relief from all the head noise, I'm not giving up....just going to be patience and see what other options exist.

11-18-2009, 03:39 AM
Definitely don't give up, Snooz! I don't remember if you go to Cleveland Clinic. They must have one or more ENT's who see all their Wegs patients. What does s/he say?

11-19-2009, 03:07 PM
I do go to Cleveland Clinic and have seen an ENT there. He is the one who gave me the medical clearance to get the aid. He says the ears look pretty good now, and are fairly stable. I think he was a bit surprised how much hearing was gone (from the audiologist report). My worry is I still have 3 holes in my ears and a collasped eardrum. I'm hoping when I am able to lower on some of the meds. which may allow my body to heal those areas, some of the hearing will return. Normally the body heals the ears but mine are not able to do it's work at this point in time.

11-20-2009, 03:04 PM
A.J. wears hearing aids. They tried putting tubes in his ears but as quick as they put them in the granulation pushed them out. His right ear appears to be coming back. THe ENT thought it might because there was no nerve damage to the right ear. The left ear had a lot of nerve damage. And as a proud mom, I am happy to say that A.J., currently on cytoxan and 50 predisone is playing on the school basketball team and running over a mile twice a week!! It almost killed him the first time, but he went back for more and its getting easier for him each time.

11-20-2009, 03:29 PM
How wonderful to hear that AJ is doing so well. May he get stronger and stronger each day. :)

11-20-2009, 05:56 PM
Great news, jeriorleans! It's good to read that AJ is getting on with the interests he had before WG, and doing well! :)

11-21-2009, 11:58 AM
Very encouraging indeed! You must be so happy as a mom...and it must be so difficult to see your child go through this. I always try to be thankful for that...I would rather take it on than see either of my kids (2 and 4) go through this.

I am also going to check further into the hearing aids....does AJ have to adjust them much? Or do they say he just has to get a new set? Did insurance cover any of the costs?


11-22-2009, 06:40 PM
Oh that is super, he must be happy

01-07-2010, 12:57 PM

Today I picked up my new hearing aids!!!! I LOVE THEM !!!! It is like a brand new world, I can hear noises and voices that I didn't hear in 6 month, like running water in the sink or TV.

They are very small devises, sit very comfortable in the ears, they have a volume control ( I asked for the volume control because for my WG condition my hearing is different every day and if I hear more that day I can just simply adjust the volume up or down) and channel control (I picked the middle grade and they have 4 channels that need to be adjusted to different situations you are in, like for regular conversations, one when you in a large group of people with lots of background noise, and one for the phone or TV)

Also I have an appointment next week if the programs need to be adjusted or changed. The first few days will be a learning experience, for the first 5 hours of wearing them I already know that the programs need to be adjusted. I can hear words perfectly clear but after the word there is a scratching noise, like a high pitch, I didn't hear that when I was in the office. One thing on the list already.

This is the best thing that I have since I gat sick.

01-07-2010, 01:53 PM

That is great~ I am so happy for you. I go to check them out at the end of the month. I am going to get two different consultations just to see what they recommend and what the price differences are...did you get one for each ear? I can hardly wait and I am fairly certain it will make a real difference in my quality of life too.

01-07-2010, 02:45 PM
That's great to hear, Barbara-- pun intended of course, since now you can hear it... :)

01-07-2010, 11:55 PM
Barbra, I find that interesting that we can hear differently each day. I have the same thing going on, but I don't need hearing aids yet. So glad you got hearing aids that you like!

01-08-2010, 07:03 AM
In my case I had to choose from 2 different styles and four different prices (price based on the style and grade). I have one for each ear.

01-08-2010, 09:52 AM
How much did they cost Barbara?

01-08-2010, 10:34 AM
The one I have cost $ 4,500.00 but my insurance will cover $ 2,000.00

01-08-2010, 01:26 PM
That's awsome the insurance will cover $2,000.00. The ones I have cost $5,250. They are the BTE (Behind The Ear) style. Because my left ear is totally dead and my right ear has severe loss I had to get a special setup where the left one acts as a microphone and transmits to the right one. This system is called Bi-Cross. The let one is made by Phonak and the right one is made by Widex. Both these manufacturers are very well known and reputalble. Only the BTE style would provide enough power for my hearing loss. I had to get the right one fixed about a year ago and it cost $300.00. I had to get sweat band for them as well - 3 pair for $120.00. And I got the left one repaired as well at no extra cost. I get my hearing tested once a year - it basically hasn't changed from 2005. The first few months I had them I had to have them adusted a few times to get the frequency settings set more appropriately for my hearing loss. I had to have the right one adjusted after I had it repaired - twice. What make are your aides Barbara?

01-09-2010, 01:46 AM
The name on the box is Amplisound

01-09-2010, 02:19 AM
I think that is a newer company.

01-15-2010, 07:48 AM
My hearing varies from day to day, too, Barbara. I don't know if this is a wegs thing or not, but your comments point toward that. There are others on this forum who can probably amplify on that point. (A certain someone isn't the only one addicted to terrible puns!)

01-15-2010, 08:58 AM
My hearing varies from day to day. I think it is dependent on the degree of fluid build up in my case.

01-15-2010, 10:47 AM
I am on Veramyst and that seems to help with the ears. I don't like the side effects and on top of that I have glaucoma. So veramyst increases the eye pressure. I decided to stop the veramyst today and see how it goes. I don't think the Prednisone is doing it's job keeping the water out of my ears and stuffiness. I am on 5 mg of prednisone, it's really frustrating! Jack how much prednisone are you on now?

01-15-2010, 10:53 AM
In a.j.'s hearing test last week, the left ear had gained 15 decimals. The nerve damage that appeared to be there before is gone. He still needs his hearing aids, but it is improving. Fortunatley, until he is 18 in the State of Louisiana, health insurance has to pay up to 1800.00 every three years per aid. Also, fortunate for me, the audiologist is my neighbor.
Last week we also went back to the Emory Clinic for a follow up. Two of the nodules in his lungs are gone. The last one has reduced by 50%. His C-ANCA is now negative.
He is staying on the Cytoxan for one more month, then switching to the Methotrexate.

01-15-2010, 11:13 AM
Whooya! What great news about AJ-- all good stuff. Thanks for letting us know!

01-15-2010, 01:03 PM
That is great news for AJ! Gives all of us hope!

01-15-2010, 07:08 PM
I have tried on several occasions to get below 10, but always have problems so have given up. The last time, I got down to 7mg over a period of 3 months, but the fluid in my ears increased to the stage where I was having regular ear aches. When, I went back to 10mg, this reduced back to a slight feeling of pressure in the ear and some deafness. I think a bigger dose might even improve this, but I suffer enough pred side effects already.

01-15-2010, 09:38 PM
Jack: If I may ask . What are the symptoms of ear involvement? Right now I have a high pitched hum, as best as I can describe it. I have not seen and ENT yet. ( I was supposed to but decided to have a pulmonary embolism instead.) It doesn't seem to last all day and comes and goes. Is this something I should have checked? Also I did have my eye pressure checked and it is high also. Barely out of range. thanks,

01-15-2010, 10:37 PM
I think that it affects each of us in a slightly different way as with most things Wegener's related! In my case, I have a lot of tinnitus (whistle and hum noises), a slight feeling of pressure and loss of hearing. However, I am sometimes able to clear the hearing by holding my nose and blowing to make my ears pop. It does not work every time and only lasts for a very short time, but confirms that the nerves are still in reasonable condition. I know that others have hearing problems due to nerve damage.

A few weeks ago, I was due to have surgery to fit grommets in order to relieve the pressure. I did not have much faith in them working, but as it turned out, I failed the pre-operative assessment due to all my health problems. I'm now being referred to have hearing aids.

I have not had problems with my eyes other than them being very blood-shot during a flare. Like something from a horror movie!

01-15-2010, 11:42 PM
I have ringing in my ears for over 30 years! Went to a bunch of doctors and it they blamed it on the medicine ( cyclosporine) and other medicines. I really think it is related to our good old friend WG. Jack, I'm suprised that your doctors havn't order the veramyst or a steriod spray for your nose.

01-16-2010, 12:30 AM
I don't have any problems with my nose anymore, it is my eustation tubes that are playing up. In any case, I would avoid nasal sprays where possible. I had lots of problems with symptom rebound when I used them in the past and ended up worse than when I started.

01-16-2010, 04:06 AM
Jeriorleans ~ Good news indeed! That should be encouraging to AJ, too. Is he doing better on accepting medication as a necessity? Future plans: How's the college business looking for him?

01-19-2010, 08:42 AM
No, A.J. still hasn't accepted the medicine. When the doctor told him he was going to have to take the methotrexate for 2 years, he was shocked. Can't worry about college just yet!! He is currently trying to get into a high school here but competition is tough. (you can't go to public school in Louisiana, they are horrible).