Hearing Loss/Hearing Aides

[Jack]

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!)

[elephant]

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?

[Jack]

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.

[Barbara1966]

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.

[Barbara1966]

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.
Barbara

[elephant]

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.

[Sangye]

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??

[snooz23]

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.

[Sangye]

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?

[snooz23]

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.