bone anchored hearing aids

[Alias]

I have severe hearing loss in one ear. My hearing aid is turning out to be a disappointment. I have very small ear canals, and I have always had a problem with wax buildup, so the signal I get is poor and wearing the thing is just irritating to the point that I have pretty much given up on it. I'm interested in hearing (pun not intended) from anyone who has had BAHA: complications? annoyances? What's the procedure like? From what I've read I'm a good candidate for this but am just starting to look into it.

[drz]

I have severe hearing loss in one ear. My hearing aid is turning out to be a disappointment. I have very small ear canals, and I have always had a problem with wax buildup, so the signal I get is poor and wearing the thing is just irritating to the point that I have pretty much given up on it. I'm interested in hearing (pun not intended) from anyone who has had BAHA: complications? annoyances? What's the procedure like? From what I've read I'm a good candidate for this but am just starting to look into it.

I love mine and it greatly improved the quality of my life and my speech too.

[annekat]

I'm in the same boat, Tom, one really bad ear, hearing aid does nothing really for it except to squeal and annoy people. It's disappointing, because it used to be the better ear until somehow the eardrum eroded away, the little bones behind it eroded, and some sort of weird skin growth started filling up the space of the middle ear. I wish I could visualize it. Anyway, a BAHA has been suggested for me, and they let me try one out by strapping it onto my head, and it seemed pretty good.... would be better, I'm sure, with it firmly screwed into the bone. I was told Medicare would cover it, but could not find that anywhere until I looked under prosthetics, where it was listed. Other types of hearing aids, they will not cover. I have just been getting by with the one decent ear so far and delaying this decision until I feel more able to cover the copay. If you have better insurance and/or the copay is not a problem, I'd say give it a shot, I guess. I know someone else on here who is happy with hers and perhaps will see this. The ones they demo'd to me came in colors to match one's hair and were streamlined, small and sort of egg shaped. Best of luck with this decision!

[Alias]

Thanks. My current insurance won't cover it but we are just about to switch plans and I think it's likely I'll get at least partial coverage. I'm a bit concerned about the invasive nature of the implant but if I get some assurance of better function in the bad ear I'd probably risk it. The manufacturers'/providers' websites of course paint a rosy picture, so I was hoping to get some unbiased first hand accounts here.

At first I was pleased with the in-ear aid, because at least I could hear something on the bad side to alert me that someone was talking to me or something was happening, but over time I have found the poor fit, the wax issue, and the fuzzy signal to be very annoying. Since my other ear often feels plugged, I might as well have my head under water at times. Certainly there are worse problems to have, but it's a quality of life issue and if I can get some meaningful improvement I'd like to do it.

[annekat]

With the BAHA, I think it's supposed to send what comes in on the "bad ear" side through the bone to the "good ear" side, and I had the impression that everything would sound like it was in the left ear (for me). But when they strapped it on me, it sounded like I was hearing in the bad (right) ear. So I don't know what to think. It was a little bit muffled, since it was coming through the bone, but a lot better than hearing nothing. I was given some literature and would probably do more research. There's another system called the 'Cros' system which works a little differently. I have literature on that, too, but that kind is not covered by Medicare at all.

[drz]

I have a behind the ear model on left ear and had to get by with it for over a year. I had lost all the bones for middle ear from infections over the years. No surgery allowed except life threatening stuff for one year according to my treatment team. The BAHA is now called an osseointegrated hearing assistant since Medicare does not cover hearing aids. Last year they wanted to drop coverage for BAHA's but got some much opposition they backed down. The BAHA on my deaf side provides most of my useful hearing now. My speech also came back to near normal after being hearing impaired for a year and half.

I got an old school model from an old school surgeon as it was only option I could find in 2012. Mayo wouldn't do for Medicare rates. My surgeon didn't do a very good job on the surgery. The titanium abutment (A Toggle bolt they screw into your head) was not properly centered or placed so I have had problems with infection around the abutment and unwanted feedback from aid touching my skin fold he creates by mistake. The newer procedure does not remove all the hair under the skin to create a big bald spot and seems to have less problems with infection too plus it is easier to keep clean i think. It should also heal a bit faster but it takes a few months for the bone to grow into the toggle bolt and a few weeks for pain to subside before you can use the BAHA.

I chose the Oticon Ponto Plus model and think it is the best choice. They have a newer model I might get when my insurance agrees to cover it. I could also get another surgery to correct some of the problems and get a newer abutment that is longer to reduce the feedback problems but so far I just live with it.

The surgery is main part of the cost. The hearing aid is the cheapest part of getting one. I love mine and go to lot of concerts with classical music and can hear well enough to enjoy it. Noise in crowds or a noisy environment is hard for anyone on any hearing aid and that includes BAHAs. When the battery in it dies, it like some one shut off the sound.

Do your research and find a good surgeon who uses modern approach and has lot of experience with good results.

[annekat]

Great info, drz. The Oticon Ponto Plus is the model I would be getting at my audiologist's, which is part of the professional suite containing my ENT and others, and the allergy dept. Anyway, I'd better do it pretty soon if I'm going to, before Medicare decides to stop covering it again. I assume you still had a 20% copay, unless you have a special plan that picks up more of the cost. I didn't know there would be such a recuperation time before getting to use it (although I have a vague recollection of being told that), but it is good to hear that you are happy with it and able to enjoy music concerts. You are the only person besides me who I've known to have had the small bones of the middle ear erode. But I suppose there are more. Could you clarify, are you still using a standard aid in one ear and the BAHA for the other? So at a music concert you can more or less hear in stereo? Or does it all sound like it's going in one ear?
Thanks.

[drz]

Great info, drz. The Oticon Ponto Plus is the model I would be getting at my audiologist's, which is part of the professional suite containing my ENT and others, and the allergy dept. Anyway, I'd better do it pretty soon if I'm going to, before Medicare decides to stop covering it again. I assume you still had a 20% copay, unless you have a special plan that picks up more of the cost. I didn't know there would be such a recuperation time before getting to use it (although I have a vague recollection of being told that), but it is good to hear that you are happy with it and able to enjoy music concerts. You are the only person besides me who I've known to have had the small bones of the middle ear erode. But I suppose there are more. Could you clarify, are you still using a standard aid in one ear and the BAHA for the other? So at a music concert you can more or less hear in stereo? Or does it all sound like it's going in one ear?
Thanks.

I saw a bill for 60 some grand but my only cost was gas to get to the Hearing Clinic for appointments and surgery. I think Medicare covered it all but not sure since I also have secondary insurance. The BAHA gives me sound through the skull and sounds goes all around skull so until a battery dies in one ear I can't tell which aid is warning of low battery when it beeps. I think I only hear on left side but sound is transferred from BAHA on right side through the skull. Without the aids I have about 10% hearing in left ear and none in right ear where there was a granuloma that wiped out hearing and balance on that side. I can't localize sound at all but ignore much fewer people now that I can hear sound coming from some place when they talk to me. Not hearing is very socially isolating and research indicates it also links to early dementia too so they advise to get hearing aids sooner than later to help avoid it.

[annekat]

I don't remember being quoted a price anywhere near that much, but then my memory is unreliable. In my case, the surgery would be done somewhere else, independently of the hearing care clinic. I guess I should call Medicare and get the full scoop and talk to the audiologist again. Thanks for the info.

[drz]

I don't remember being quoted a price anywhere near that much, but then my memory is unreliable. In my case, the surgery would be done somewhere else, independently of the hearing care clinic. I guess I should call Medicare and get the full scoop and talk to the audiologist again. Thanks for the info.

Usually what is billed to Medicare and/or insurances and what gets paid are greatly different. Willingness of a vendor to do work for Medicare rates also varies greatly. One doctor at Mayo wouldn't do it for Medicare rates so I went to state university medical clinic which usually have to accept Medicare. It took the doctor there only a few minutes to do the paperwork and get BAHA approved for me and set up a surgery date.

[annekat]

Usually what is billed to Medicare and/or insurances and what gets paid are greatly different. Willingness of a vendor to do work for Medicare rates also varies greatly. One doctor at Mayo wouldn't do it for Medicare rates so I went to state university medical clinic which usually have to accept Medicare. It took the doctor there only a few minutes to do the paperwork and get BAHA approved for me and set up a surgery date. The audiologist quoted me a guess of a price of the top of her head without reference to me being on Medicare, having little knowledge of that nor being involved in billing. The problem is that the surgery would be done somewhere else, and I'd have a choice of places, it sounded like, and those people would be generating the bill for that part of it. So I'd have to get signed up and talk to those people before knowing the cost for a Medicare patient. So perhaps the amount she suggested was for the device itself alone, and I thought I remembered something like $8000. So I guess the surgery could be pretty expensive on top of that. Obviously, more investigation is needed. It's just hard to commit to something in advance without knowing what the cost will be, even if the rates are greatly reduced for Medicare. I am on original Medicare and have no supplemental plan. I guess when I turn 65 next year I'll be eligible for Medigap plans, whatever those are. All the different terminology is overwhelming.

[mams57]

I'm realizing that my hearing loss in one ear is undoubtedly related to the Wegeners. I've had horrible tinnitus and trouble hearing for years and an ENT said all of the little bones are gone. Oddly this is the same side where I developed a partially deviated septum in my nose and it isn't due to positional drainage. ( I don't sleep on that side of my face ) My sense of taste and smell hasn't been very acute for years either. Is this also a by product of this disease? Thanks 😊

[Pete]

From my experience, Medicare doesn't cover regular hearing aids (mine cost over $6,000 five years ago). Check with your insurance.

[annekat]

I'm realizing that my hearing loss in one ear is undoubtedly related to the Wegeners. I've had horrible tinnitus and trouble hearing for years and an ENT said all of the little bones are gone. Oddly this is the same side where I developed a partially deviated septum in my nose and it isn't due to positional drainage. ( I don't sleep on that side of my face ) My sense of taste and smell hasn't been very acute for years either. Is this also a by product of this disease? Thanks  Yes, these are all by products of the disease. I haven't heard of that many people losing the little bones in the ears, but I am one of them, in one ear. I had hearing aids in both ears but recently have given up on the ear with the missing bones and eardrum, and just use the one ear that hears well with the aid. My sense of smell is gone and I can still taste, but I feel it is dulled a fair amount. I had some weird tinnitus years before developing WG and more recently have had louder and more troubling tinnitus, along with recurring vertigo. I seem to have eliminated the vertigo and helped the tinnitus by stopping caffeine consumption. This is a big sacrifice to make, but it is worth it. We are all a little different and what may work for one person may not work for another.

[annekat]

From my experience, Medicare doesn't cover regular hearing aids (mine cost over $6,000 five years ago). Check with your insurance. No, they don't. My hearing aids were donated to my hearing care clinic, which operates within my ENT's group. They are used, and one is a different color than the other. I had to pay some associated costs such as the ear molds, $75 each, and for one aid, had to pay $250 to renew the warranty. They are both out of warranty now and I'd have to pay that to have either of them repaired. Luckily, I have a spare, since I'm not using one of them. The Lions Club is said to help low income people get hearing aids.

As for the bone-anchored hearing aids, they are said to be covered by Medicare because they are considered a prosthetic device. Medicare has tried to withdraw this coverage in the past but there were protests and they are still covering it. Since there would be a 20% copay, I assume, I am still not feeling able to do this. I said above that I have given up on the bad ear, but I really haven't. I can still hear a tiny bit in it despite it's missing an eardrum and the little bones. My audiologist says none of their hearing aids will work in it, if they amplify enough, they will just squeal and bother people. But I am not taking it as gospel truth and may look elsewhere some day. Of course, paying for it would still be a problem.

[drz]

I lost the middle ear bones in my left ear many decades ago and had a mastoidectomy to remove infection and a recurrent cholesteatoma. I use a regular behind the ear hearing aid in that ear and it helps. Without it there was little hearing in that ear but I think the hearing in that ear actually improved after I went deaf on right side from damage from Wegs decades later. The BAHA picks up sounds and send it through my skull to left side so I can hear better.

[Pete]

How are you at locating the source of a sound?

[annekat]

How are you at locating the source of a sound? That has always been tricky with one ear hearing better than the other. I actually feel my hearing has improved in the better ear since losing most of it in the bad ear. And my brain has somehow been trained to recognize sound location direction a little better, though it is of course not infallible. When I do an online hearing test (not to be considered as good as a real one), some of the sounds that go into the right side are transferred to the left ear, while others are heard in the right ear as they are supposed to be. It's a matter of different frequencies.

[mams57]

I don't drink alcohol or even soda. Just water, unsweetened tea and occasional juice. Don't do illegal drugs and quit smoking several years ago but if I have to give up my morning coffee?..... I fear one may find me climbing up a water tower with a high powered rifle and a new first person shooter video game named after me...LOL ������

[annekat]

I don't drink alcohol or even soda. Just water, unsweetened tea and occasional juice. Don't do illegal drugs and quit smoking several years ago but if I have to give up my morning coffee?..... I fear one may find me climbing up a water tower with a high powered rifle and a new first person shooter video game named after me...LOL ������ No one said you had to give it up. It might not even help anything if you did. If you have ever had moderate to severe vertigo, you might understand my motivation in giving it up. I did not want to, but it enabled me to get off the meds for vertigo which were perpetuating it at the same time as helping. And it was a nice bonus having it help my tinnitus and double vision at the same time. We are all different and our issues are complicated. I'm not even sure it was WG causing my vertigo, though I think there was a connection. I will probably drink coffee occasionally, in fact, had a cup at mid-day recently, and nothing happened. It is more of a cumulative affect on the inner ear. Green or black tea would be less risky. But right now, I'm just enjoying not having vertigo, or the feeling I might get it, and don't want to push things. I hope you never have vertigo as part of your ear problems and are able to enjoy your coffee for the rest of your life!

[drz]

How are you at locating the source of a sound?

Not very good but I am much better of hearing something than before so I can search for the source of the sound. Before the BAHA I just stonewalled a lot things said to me since I never heard them. I have to get help to find a sound in a car that's bugging me if I hear it at all.

[annekat]

Not very good but I am much better of hearing something than before so I can search for the source of the sound. Before the BAHA I just stonewalled a lot things said to me since I never heard them. I have to get help to find a sound in a car that's bugging me if I hear it at all. Oh, yeah, sounds in a car are definitely an issue. Sometimes I'll hear weird sounds coming from other cars, especially if my windows are open, but can't tell if it's coming from my car and have to wait until there's more separation between me and that other car.

[Alias]

Sound location is completely impossible for me, with or without my in-ear hearing aid. Still researching the bone anchored thing; really not excited about any invasive procedure and it seems like not everyone gets a great result.

[annekat]

Sound location is completely impossible for me, with or without my in-ear hearing aid. Still researching the bone anchored thing; really not excited about any invasive procedure and it seems like not everyone gets a great result. I also don't much like the idea of drilling and screwing something into my skull. There is another system for unilateral hearing loss called the Cros system, which is more like regular hearing aids, but sounds going into the bad ear can be transmitted to the good ear. I think advances have been made and there are more adjustments for different situations than there used to be. There's lots on google about it, including sites of the more well-known brands, with some good explanations of how it works. I have a brochure on it but my audiologist was pushing the BAHA because there is some Medicare coverage, while there isn't for this. You might want to take a look at the wiki entry and then look at the other sites that go into more detail: https://en.wikipedia.org/wiki/CROS_hearing_aid I realize you may already have heard of this.

[Alias]

I also don't much like the idea of drilling and screwing something into my skull. There is another system for unilateral hearing loss called the Cros system, which is more like regular hearing aids, but sounds going into the bad ear can be transmitted to the good ear. I think advances have been made and there are more adjustments for different situations than there used to be. There's lots on google about it, including sites of the more well-known brands, with some good explanations of how it works. I have a brochure on it but my audiologist was pushing the BAHA because there is some Medicare coverage, while there isn't for this. You might want to take a look at the wiki entry and then look at the other sites that go into more detail: https://en.wikipedia.org/wiki/CROS_hearing_aid I realize you may already have heard of this.

Thanks Anne, I had not heard of the CROS system. I've looked at some of the info on line and will definitely check into it further. If anyone on the forum has used CROS I'd be interested in comments.