baha hearing loss questions

[Alias]

I think I have queried members at least once before about experience with BAHA, but I am asking again for your input. My experience with an in canal hearing aid has not been good at all. My ear canal is very small and the device just keeps coming out. The benefit is negligible, at best. Today I visited an audiologist and was strongly encouraged to consider BAHA. Until now, I have been hesitant. She said that I have excellent "bone scores", so that I probably will get a very good result from BAHA. I have insurance will cover the procedure, etc. My hearing loss has not objectively changed since I was diagnosed with GPA, but it is really wearing me down. Next step is to try a "headband" facsimile of BAHA for a few days. I would love to hear from anyone who has BAHA, good and bad experiences.

[Helen]

Hi Tom, do you know how your hearing-loss happened?
Baha is for conductive hearing losses. It's an invasive procedure and the outcome depends on each individual. Have you ever tried a behind-the-ear aid with a custom soft silicone mold to fit your canal? They have more more powerful input which people with SNHL use, than the hidden in-ear ones that fall out. I've heard numerous of stories of those tiny in-ear aids, ranging from being lost in the wash, to mice taking off w/ them at night. Ha! The aids w/ soft molds are comfortable and more visually appealing than Baha. I would suggest a trial period with them, before surgery which you cannot return back from. Most employees in clinical settings will push on devices as it's a big money maker for a large corporation, which you will be the one to deal with the consequences, not them. From my experience, I would try all non-invasive methods first, one step at a time to that type of decision. -H.

[Pete]

I’ve worn behind the ear hearing aids for about six years. While my hearing is better, it’s still not great.

I have about 40% hearing loss plus tinnitus. Without hearing aids, I hear mid-range frequencies fairly well. The higher frequencies are tough for me to hear. The lower frequencies are better than the high, but still not good. With hearing aids, I can hear all frequencies ok. The thing about hearing aids is that they amplify everything. In noisy environments, it’s difficult to hear a specific voice and carry on a conversation.

Hearing aids aren’t cheap. Mine cost over $6,000 for the pair. Neither Medicare nor my supplement cover them.

[drz]

Before Wegs I had a BTE aid in left ear which had severe hearing loss from numerous infections and surgeries. I have no middle ear bones left and had a mastoiodectomy decades ago to help treat a chronic infection and repeated cholesteatomas into the mastoid. This surgery made it easy to remove them without further surgeries.

I had adequate hearing in my right ear before Wegs took that away along with my balance. I was told a BAHA would help restore more functional hearing but I had to wait till I was into a drug induced remission for a year before they would do such a surgery because of high risk of infection into skull which could then enter the brain.

During this time my speech deteriorated which I thought was related to being in a drug induced coma for a couple weeks or at least that is what intubation seemed like to my family. I learned from my ENT surgeon that hearing loss had caused my speech to deteriorate and it would improve after my hearing was restored. I still had limited hearing in my left ear which became my good ear since my right ear was deaf so they would install the BAHA on the right side. You can't use the word hearing aid so they are no longer called Bone Anchored Hearing aid (BAHA) since Medicare will not cover any hearing aids so I got an osseointegrated hearing assistant that was fully covered by Medicare almost six years ago and it greatly improved my quality of life. Hearing loss is very serious handicap for social interactions and creates feeling socially isolated. You get tired of asking everyone to repeat everything and people get tired of doing it. I also noticed that my speech seemed to return to normal again too after many months.

The BAHA does not give me "normal" hearing but it is 80% better or so with it and I was very excited when i wore the test unit to see how much better life was with it. There are some down sides to life with aids. Increased risk of infection being worst one, hassle of batteries and squealing noise and feedback at times, which I can't hear so others tell me I am beeping when my insulin pump or CGM is calling for attention or my watch alarm is going off. It does make it easy to sleep in noisy settings since i am pretty deaf without the aids or if they are turned off.

But I can generally hear most normal conversation and watch TV great with my TV streamer putting the sound into my aids and also have a great remote mic that can be used with radio, IPod, phone player or in a crowded restaurant for hearing my dining companions. It works great for me in an exercise class so I can hear the instructor too since it streams her voice to my aids. Some facilities also have a teleloop setup to send sound directly to your aids although I have not found any in my locale. I miss a lot of lines when viewing non professional plays but musical ones seem to work better and I enjoy many concerts although I know I miss hearing some notes and lyrics in singing.

A rough analogy might be walking with a walker is not as great as normal walking but after life in a wheel chair or being bed ridden for a while, it sure feels good. I know it did for me. So likewise my BAHA is really great.

I have had both brands and have the old school surgery with a titanium toggle bolt screwed into my skull that was done six years ago. Most today use the magnetic ones with a minor surgery to install the magnet under the skin over the skull. Much easier surgery and healing and attachment of BAHA to your head. The only downside for magnetic BAHA is no MRI with it and I have had three or four in past few years.

Hearing aids are electronic so they keep improving like all things electronic. My BTE one is only a year old but is already surpassed by two newer and better models.

[Alias]

Thanks so much for that thoughtful reply - very helpful.

Before Wegs I had a BTE aid in left ear which had severe hearing loss from numerous infections and surgeries. I have no middle ear bones left and had a mastoiodectomy decades ago to help treat a chronic infection and repeated cholesteatomas into the mastoid. This surgery made it easy to remove them without further surgeries.

I had adequate hearing in my right ear before Wegs took that away along with my balance. I was told a BAHA would help restore more functional hearing but I had to wait till I was into a drug induced remission for a year before they would do such a surgery because of high risk of infection into skull which could then enter the brain.

During this time my speech deteriorated which I thought was related to being in a drug induced coma for a couple weeks or at least that is what intubation seemed like to my family. I learned from my ENT surgeon that hearing loss had caused my speech to deteriorate and it would improve after my hearing was restored. I still had limited hearing in my left ear which became my good ear since my right ear was deaf so they would install the BAHA on the right side. You can't use the word hearing aid so they are no longer called Bone Anchored Hearing aid (BAHA) since Medicare will not cover any hearing aids so I got an osseointegrated hearing assistant that was fully covered by Medicare almost six years ago and it greatly improved my quality of life. Hearing loss is very serious handicap for social interactions and creates feeling socially isolated. You get tired of asking everyone to repeat everything and people get tired of doing it. I also noticed that my speech seemed to return to normal again too after many months.

The BAHA does not give me "normal" hearing but it is 80% better or so with it and I was very excited when i wore the test unit to see how much better life was with it. There are some down sides to life with aids. Increased risk of infection being worst one, hassle of batteries and squealing noise and feedback at times, which I can't hear so others tell me I am beeping when my insulin pump or CGM is calling for attention or my watch alarm is going off. It does make it easy to sleep in noisy settings since i am pretty deaf without the aids or if they are turned off.

But I can generally hear most normal conversation and watch TV great with my TV streamer putting the sound into my aids and also have a great remote mic that can be used with radio, IPod, phone player or in a crowded restaurant for hearing my dining companions. It works great for me in an exercise class so I can hear the instructor too since it streams her voice to my aids. Some facilities also have a teleloop setup to send sound directly to your aids although I have not found any in my locale. I miss a lot of lines when viewing non professional plays but musical ones seem to work better and I enjoy many concerts although I know I miss hearing some notes and lyrics in singing.

A rough analogy might be walking with a walker is not as great as normal walking but after life in a wheel chair or being bed ridden for a while, it sure feels good. I know it did for me. So likewise my BAHA is really great.

I have had both brands and have the old school surgery with a titanium toggle bolt screwed into my skull that was done six years ago. Most today use the magnetic ones with a minor surgery to install the magnet under the skull. Much easier surgery and healing and attachment of BAHA to your head. The only downside for magnetic BAHA is no MRI with it and I have had three or four in past few years.

Hearing aids are electronic so they keep improving like all things electronic. My BTE one is only a year old but is already surpassed by two newer and better models.

[drz]

Thanks so much for that thoughtful reply - very helpful.

You can PM me if you have further questions.

Have you tried wearing a demo unit with a rubber band around your head to see how much it helps you. Most good places will insist on this before they consider surgery. It might even be an insurance requirement.

[Alias]

I am wearing the demo unit for the next couple weeks. I have to say it is very exciting, as the amount of sensory input is literally dizzying. I have severe one sided conductive hearing loss. I have very small ear canals and lots of recurring wax build up, so I pretty much failed with an in canal hearing aid. Getting even a portion of my hearing back is a big deal for me. When my phone rings, I can now find it without running all over the place, and I can confidently have a conversation with the grocery checker or restaurant server. It's amazing. I am wearing the SoundArc unit from Cochlear.

[Lilly]

For some reason I have never heard of the BAHA. My EENT seems defeated by my ears. I have had E tubes over the years as most of us have. My left ear now has a perforated ear drum. My right ear has a tube in it, then it gets stuck with the fluid in my ear so thick it cannot get through. Every day my hearing is different. Sometimes I have white noise in one ear and the other is clogged up. Sometimes I hear loud noises that are not happening, because my cat is not reacting to the "noise" I hear. It sounds like someone is mowing the lawn, or chopping wood, etc....today, my left ear with the perforation has a light white noise, and my right ear is aching, and pressure. Tube is either clogged or fell out. Since my ears change daily, when I make an appointment for an ear problem, its usually gone or changed when I get to his office. Hearing loss tests have shown 30percent loss in my left ear with perforation. The right ear fluctuates with the tube issue. This type of hearing loss is very debilitating, just because of not hearing people around you in public, or driving problems because hearing sounds sound like they come from the opposite side of where you hear them. I was going to look into a cochlear implant, but now I am wondering about the BAHA. Did any one experience the ear drainage getting so thick that it would not drain? My EENT says its like glue, trying to suction it out. Last time in the office he used a very strong suction that made me feel like I was spinning out of control and falling off the table feet first!! I said..."What a Ride"!!!! So now at least I have something else to look into, and I have Medicare and BCBS C+ so maybe I can have insurance pay for it, that is if it would help me. Blessings to yall.

[Alias]

I just had a consult with a BAHA surgeon yesterday, and am fairly certain I will proceed.

I definitely sympathize with what you are going through, though fortunately I have not experienced the drainage issue or any significant pain since I was acutely ill. What I have now is severe unilateral hearing loss and annoying bilateral tinnitus. I also have those phantom noises at times, and of course I can't tell where sounds are coming from at all. Just getting through a trip to the grocery store can be a major challenge!

I wonder why your ENT has not mentioned BAHA? Maybe for some reason you are not a good candidate for it? You might want to check out Cochlear's website - lots of good information there. You could also find out who in your area does the procedure and arrange a consult, or start with an audiologist to discuss your situation and options that might improve your situation.

It's my understanding that Medicare does cover this, unlike traditional hearing aides.

[Lilly]

Hi drz, I have read and re-read your post, because I am having so much trouble with my ears. One thing I have been concerned with is that my EENT has not done any tests to look at the internal parts of my ears since my hearing loss and left ear perforation. I have told him about all the things I am experiencing, tinnitus, loud sounds, pain, pressure, etc., and the fact that all these problems will happen in BOTH ears, not usually at the same time, but back and forth. I feel fluid behind my ears, but he says that's impossible....but I feel it. My next step is looking at visiting another EENT whose name was given to me from my eye doctor (I go to him for yearly check ups and glasses-my sister works for him, plus he is AWSOME!! and a friend) Anyway, I have been on and off the forum and posted some of this information on other threads, and am kinda collecting information from everyone who gives it. I do have a question that will be one of the first questions that I will probably ask a new EENT,....If my left ear now has a perforation in it, and has 30% hearing loss in it,.....and my right ear is still able to have a E tube inserted to drain fluid (but fluid is too thick to drain)…..Then why do I have the SAME symptoms, "loud white noise, continuous loud sounds, fluid back and forth, feels like cotton stuffed in ear, pain, pressure"...in both ears? Not both ears at once, but they each have the same symptoms. That doesn't make sense to me. Forgive me if I missed an explanation of this in yalls posts. I tend to jump from the forum, then another day there is information on a "wegeners facebook " page, so I go there. Thank you for this information drz, and all the others. I will keep posted on what happens to me. Love and Peace to all and Blessings....Lisa :-)