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]

Well, yes... my hearing loss is a direct result of tissue damage from GPA, and is conductive in nature, not sensory/neural. I'm definitely with you in being wary of invasive treatment, but also very tired of dealing with the hearing loss. Thanks for your reply.



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.

[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]

the demo unit is my next step, later this month.

[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.

[drz]

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.

It was a life changer for me and it sounds like it is having a big impact on you too!:hug3::thumbsup:

Are you looking at a magnetic implant for surgery or old school one?

[Alias]

Leaning toward the magnetic one, as I infer from the info I've seen that the infection risk is lower. (I'm not currently on an immune suppressant but probably will be again at some point.) I've yet to talk to a surgeon though. I worry about complications, but I don't want the isolating effects of hearing loss to continue, and this seems to be a technology that works for me.

[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]

Yes! Just going to the grocery store is a challenge for me TOO! I just turn and run right into people! Driving is difficult too. It really does effect so much, especially when its different and changing so much....its maddening!!! I am wondering if the acronym BAHA is the same type of procedure as a Cochlear Implant. I have been considering that, but I have not been able to have anyone who knows why I have the thick stuff that gets in my ears, instead of just the regular stuff that is relieved with an Eustachian tube. My EENT doesn't have an answer because none of his patients have never had it thick like mine. And as far as my other crazy issues with LOUD phantom noises, tinnitus, ringing in ear, ear being clogged up and fluid passing from one side to the other, pain and pressure in both ears.....he just said that wegeners has probably messed up the ear nerves and that is causing all the craziness. Today, I am only having some light "white noise and swooshing" in both ears, and less hearing in the left one, with the hole in it. It surely messes with my balance, so I do everything very slowly!! Thank you so much for your feed back and information. I am sorry you are experiencing the ear problems, its very difficult, and I know you are suffering like me. I hope you find an answer, and we can both get some good help. Blessings to you, stay strong!!!

[drz]

Yes! Just going to the grocery store is a challenge for me TOO! I just turn and run right into people! Driving is difficult too. It really does effect so much, especially when its different and changing so much....its maddening!!! I am wondering if the acronym BAHA is the same type of procedure as a Cochlear Implant. I have been considering that, but I have not been able to have anyone who knows why I have the thick stuff that gets in my ears, instead of just the regular stuff that is relieved with an Eustachian tube. My EENT doesn't have an answer because none of his patients have never had it thick like mine. And as far as my other crazy issues with LOUD phantom noises, tinnitus, ringing in ear, ear being clogged up and fluid passing from one side to the other, pain and pressure in both ears.....he just said that Wegeners has probably messed up the ear nerves and that is causing all the craziness. Today, I am only having some light "white noise and swooshing" in both ears, and less hearing in the left one, with the hole in it. It surely messes with my balance, so I do everything very slowly!! Thank you so much for your feed back and information. I am sorry you are experiencing the ear problems, its very difficult, and I know you are suffering like me. I hope you find an answer, and we can both get some good help. Blessings to you, stay strong!!!

I have what used to be called a BAHA --Bone Anchored Hearing Aid. They changed the name to get them covered my Medicare and other insurances. It conducts sound through the skull via a titanium toggle bolt or screw implanted into the skull. I still have a working inner ear on other side that can pick up the sound waves from my skull. I also use a regular BTE aid on the side with limited hearing. I have no hearing on BAHA side.

The cochlear system has an implant that goes into the inner ear and one has to learn to decipher the vibrations into meaningful sounds. To confuse the matter more the Cochlear system also has BAHA processors. Both look the same from the outside. Most BAHA today is done with a putting a magnet under the skin next to the skull. Many people have asked me "BAHA or Cochlear?"

Many people who can't use regular in the ear hearing aids use a BAHA. Excess drainage or infections are usual cause to preclude a regular hearing aid.

[Lilly]

Thank you drz and all the other weggies for the information! It has helped my understanding of the differences of the BAHA and the Cochlear. My ENT does not seem to offer any advice for me except a hearing aid. I will need to do one of 2 things. Either keep my ENT and discuss what I have learned, or look into getting a new ENT, before my ears are beyond help. I see my Rheumy tomorrow, the 22nd. I am going to see what he thinks I should do. I will let yall know! I just LOVE all the help and support I get from everyone on this amazing forum. Blessings and Love to all my Warrior Friends!! Peace to you all....:-)

[drz]

Tinnitus can be the brains attempt to create sound to process when there is no working hearing. After Wegs destroyed the hearing in my good ear along with the balance I had a noise that sounded like a radio station that was not tuned in correctly. After I got my BAHA and got some return to more normal hearing my tinnitus also decreased a lot.

[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 :-)

[Pete]

I really think you need an EENT who will investigate what’s behind your symptoms. Good luck and better health!!

[drz]

Finding a doctor to do a BAHA on you is much easier now than a few years ago. Six years ago Mayo wouldn't do one on me unless I came up with $60,000 cash to pay for it but the only other option I knew about was the Hearing Clinic at the U of MN and they were willing to do it for Medicare rates. Since then I have found two other doctors closer to home who both have experience with doing BAHA's.
You can check with Opticon and Cochlear and both will give you a list of vendors that can install their products and also help you with insurance details for purchasing a BAHA. Neither are very efficient in my experience but Medicare requires that you go through them to purchase a BAHA and many insurance companies might be the same way. If you find a name on both of their lists, they should be OK to sort out your issues.

[Helen]

I became permanently disabled following cochlear implantation (CI) when I was "normal" prior to it's surgery. CI surgical methods are different from Baha. All my issues prior, were infection symptoms... very aligned to Wegeners, but none of the Drs. or ENTs bothered to investigate, examine, test in ENT health to try resolve. There's more profit with sick patients. What could I do? I could not get any help, did not have proper tests... my only option given was to do a $100,000 implant device as my -only- treatment of care. I could not even get antibiotics. I was told the CI would resolve my chronic symptoms... instead I became disabled. I physically cannot function well. I had no idea at the time of all the other tests and options an ENT/audiologists could have provided in the first place to at least try help, but they are unable to make profitable incentives that way...only from very expensive corporation devices. Now? Much, much worse. It's chronic and I now cannot get any help at all for my worsening, ongoing suffering... even for breathing/nose issues because of this disabling device carved into my head. I have a huge hole also drilled out of my mastoid bone that hurts. My ear and cochlea are damaged by the cutting, drilling, the insertion of the receiver, and electrode, which added major symptoms to my prior lesser ones. None of the ENTs will help since because they report this as "complicated" without looking, claiming to suddenly not have the ENT background/degree/knowledge to examine, look or communicate, when they advised the CI in the first place. They got the money and ran. I learned over time, that I am one of many, horribly suffering with similar symptoms. All of it not reported. -H.

[drz]

Infections are a big concern for any of us with a suppressed immuned system. I have had this issue even before Wegs from decades of type 1 diabetes. I could not have my BAHA surgery until I had been in a drug induced remission from GPA for over a year because of increased risk of infection. I have also been told that any elective procedures like a tooth implant will never be offered me due to my suppressed immune system and slow healing process.

A cochlear implant surgery is more invasive than BAHA procedure which would increase the risk of infection.
Was an infection specialist consulted during your treatment. Normally they consider using some IV antibiotics over a longer period of time to treat infections in those of us with suppressed immune system. It is good to have a relationship established with one in case of need.

[Lilly]

What testing is done before being able to get a BAHA?

[Lilly]

Dear Helen, I am so sorry about what has happened to you �� Everything you go through with your disease, and then some money hungry, careless, horrible "doctors"?,,,,take advantage of you. And I get so angry, thinking that they have made your condition worse! I just can't believe that this happened. I'm definitely taking my time, trying to learn what can help me with my hearing, and all the other things happening in my ears that I just don't understand. Telling your story will help a lot of people like me....mainly because I feel like I WANT to HURRY UP, and do something before Wegeners does any more damage to my ears.....but knowing what happened to you will help me be sure and understand all of my options, and also be sure it will not cause more damage. I wish you could take this person, or people, to court....and shed some light on the terrible thing that happened to you. They have destroyed something that you can never get back!! �� I'm ANGRY AGAIN!! Take care, prayers, and Love,....Lilly

[Alias]

Just a couple thoughts: you could start with an audiologist to get a current audiogram to assess the extent and type of hearing loss you have. That would help guide your ENT as to whether you are a BAHA candidate or not. Also, the audiologist could set you up with an external device, called a SoundArc, that will give you some idea of the result you might get from an implant. That would be a free trial for a period of weeks. I found it sort of mind blowing, because the amount of signal coming into my brain and the ability to hear in crowded environments was amazing. There is an option to also just get the SoundArc, but depending on your insurance it might or might not be covered.

The audiologist could probably also steer you to an ENT surgeon who has a lot of experience with implants. The doc I met with recently does about forty per year and has great credentials.

I share Helen's skepticism and disgust with unscrupulous providers who are aggressively promoting procedures just to make their boat payments or whatever. You really need to be your own advocate and do your homework in order to get the treatment that is right for you and to find a reputable provider. That said, the BAHA seems to be a proven technology at this point, if you are a good candidate. Of course there are risks that only you can weigh against the potential benefits. I'm in that spot myself right now, but am leaning towards getting it done.

[drz]

What testing is done before being able to get a BAHA?

Mine was just a a good audiology exam to make sure I had good bone conduction hearing. I also wore a strap on demo BAHA for a week to be sure it worked for me and I liked the sound it provided.

[Lilly]

Just a couple thoughts: you could start with an audiologist to get a current audiogram to assess the extent and type of hearing loss you have. That would help guide your ENT as to whether you are a BAHA candidate or not. Also, the audiologist could set you up with an external device, called a SoundArc, that will give you some idea of the result you might get from an implant. That would be a free trial for a period of weeks. I found it sort of mind blowing, because the amount of signal coming into my brain and the ability to hear in crowded environments was amazing. There is an option to also just get the SoundArc, but depending on your insurance it might or might not be covered.

The audiologist could probably also steer you to an ENT surgeon who has a lot of experience with implants. The doc I met with recently does about forty per year and has great credentials.

I share Helen's skepticism and disgust with unscrupulous providers who are aggressively promoting procedures just to make their boat payments or whatever. You really need to be your own advocate and do your homework in order to get the treatment that is right for you and to find a reputable provider. That said, the BAHA seems to be a proven technology at this point, if you are a good candidate. Of course there are risks that only you can weigh against the potential benefits. I'm in that spot myself right now, but am leaning towards getting it done.
Thank you! I am still amazed that my EENT (who must have knowledge of these different options) has never ever talked with me about any of them. I am so grateful for this forum, as its people are filled with knowledge, because we have something in common! I am going to begin my research, and really learn as much as I can before I make a decision. I am soooo ready to get some relief! It is definitely a game changer as far as my independence goes! Everything is more difficult, because of the ear issues. Driving, being in public, talking to people on the phone, in a food drive through, etc. Thanks again!! Peace and Health to you, and all who are reading this...Much Love and good vibes. Blessings, Lilly

[Helen]

Thank you Lilly.
It's horrible and unnecessarily complicated than most people can imagine. I'm suffering greatly from it, but not divulging. I can only keep it light here, as the reality is, society really do not want to know these issues, and see them as a negative topic... but it's reality. I do need to stress, in honesty that I really want the best for everyone. I will try to help others of what I'm aware of, what I've been through and the knowledge to this pt. that may help. That's all I am able to do. I do not want others to end up in my shoes. I've been put through so much, and it still continues... which is the reason of my lengthly post. I want everyone to be healthy, be happy, but same time be cautious and aware when they go into surgery or hospital... I may be able to provide some input from my own experiences to help. I hope this make sense?

Devices inserted into the body usually involve invasive methods. Advertisements/booklets display a lot of misconstrued information to people to pull them in, like most products on the market. It's one sided. These are 100k devices and investors in the medical sector rake in a lot of incentives/profit from our insurances, and will do anything to make as much as possible, despite the consequences (such as lowering the standards to make you a "prime candidate"). You were already a candidate! Everyone is a candidate! You may have already heard of other concerning topics involving Big Pharma.? That's all I can FYI. I, unfortunately, learned too late, to discover, you're on your own. Be the best advocate to protect yourself, because the reality is no one else truly cares when something happens later. "Sorry". People do NOT want to get involved unless it's happening to them too. Life is too short. You're stuck with the consequences, not them who got the money.

Yes, i agree...to NOT to jump into any invasive surgery without research, gain the knowledge, understand valid data, and most of all - have an empathetic ENT who truly cares and is transparent to help you (rare), despite the brochures they advertise. The best information is through actual patients, rather than online random research publications (often funded by Pharma!!) Anything that requires cutting, drilling into your body...take it seriously. I did not have the knowledge or support I required and now suffering the consequences. Like how you felt, I simply gave up to trusting a "TOP" surgeon who advertised in being a "TOP" DR. to resolve my illness and an odd Tinnitus. I was intimidated to feeling stupid . BUT, when I required help afterward? *POOF* Disappeared and -my diagnoses redirected and STILL they avoided reporting the true issues caused by the surgery/device! This is NOT reported, which is disturbing. How many others out there like me? I went from a highly functional professional, with a positive attitude in life (too trusting w/ Drs) to suddenly disabled in a few hours, and STILL continue w/ prior underlying health issues aligned with Weg's!! Seriously.

The Baha device is a vibrotactile sort, often used for unilateral conductive hearing-losses with those who have a non-working middle ear like Dr.Z. From my understanding, the procedure is much less invasive than a CI. There is also a middle ear type of implant. Curious if Dr. Z is aware of this one? Implants do not function like hearing aids. Hearing-aids are non invasive and simply just amplify environmental sounds which are good for those who have a functional middle/inner ear. They are the truest in replicating "normal" sounds and I wish I stayed with them, as I did well with. but despised the newer "digital" models vs analog. Implants are very different. They send out electronic transference via bone or nerve and the sound is robotic/electronic... if that. For those desperate to have "anything" of a sound to help localize, these may be great. However, they are not a resolution to underlying ear "health" issues! I strongly recommend to find the cause of it and have your hearing tested more frequently to compare audiogram changes, before doing any surgery. Glue-ear is very specific and is a red-flag of a problematic dysfunctional Eustachian tube (ETD). Did your ENT tell you this? This coincides to nose health, and possibly your eyes! Even if you ignored me and went ahead with surgery, your glue-ear issue would still continue! Forgive me for such a long post. -H. (*Hugs* and Peace to all)

[Lilly]

Thank you Helen for the up front information....its EXACTLY what I needed!! I have received so much great information about the different ways our ears are affected by wegeners, as well as other things. Its very difficult when you have had the disease for so long that when some things happen to you, it could be wegeners.....or getting older!! So confusing! And I am also shocked at what little I knew (or paid attention to) about how the ears begin to deteriorate along with the sinuses and eyes, as the time goes by. I really just assumed that I would just be keeping E tubes in my ears on and off for the rest of my life....well....just like my eyes, there comes a day when those tubes just don't work anymore, and as for my eyes, I just look like I am crying a lot!! lol. But the ears, a WHOLE other matter. Like you and so many others have said, hearing loss is not only aggravating, its debilitating! With not only hearing loss, but hearing sounds that are not there (only in your head! haha) And the tinnitus!! And the whooshing white noise, and the hammering loud noise! Then there is the peace and quiet you are enjoying as you are watching TV and reading the closed captions, and suddenly your cat jumps out of your lap and flies out of the room, and you have not heard a thing! So what in the heck did the cat hear???? HaHaHa…..anyway, thanks again for spending the time with the much needed and much appreciated information. I am looking forward to being able to hear better!! Peace, Love and Blessings

[Elena]

I have bilateral baha 5's with abutments and am very happy I made that choice. I never had "normal" hearing aids before, as my GPA rather quickly and aggressively damaged my middle ears beyond repair. I went from having quite okay hearing, to not being able to hear much at all in about a year. Luckily I got the baha's before it got so bad I didn't function at all socially.

While the baha's of course haven't done anything to improve my "ear health", they have at least allowed me to lower my stress levels and improve my social life, as my ear issues doesn't impact my hearing (as long as I wear them, of course). I chose to go with the abutment version instead of the magnets, because they transfer vibrations to the inner ear much more efficiently, as the vibrations do not have to pass through the skin first. As I don't know how my hearing will change in the future, I found that to be the safest choice.

My advice would be to get as much information about possible hearing solutions for you, however based on my experience, it's the rheumatologists that need to tailor your treatment to stop further damage from happening in your ears. Mine are unfortunately still working on that...

[Alias]

An update here: I elected to avoid the invasive procedure. After a long delay, I and the audiologist got insurance approval to get the SoundArc by Cochlear. I am quite happy with it. Hugely better than the in canal aid I started with... and no surgery. The device has a two year warranty, including one free replacement if it is lost or stolen. For me (I have unilateral conductive hearing loss), it's pretty ideal.

[drz]

It should improve your hearing a great deal. Let us know how you like it.