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Thread: baha hearing loss questions

  1. #21
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    Default Ear Implants

    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.
    Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence - Helen Keller

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  3. #22
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    Default Re: Ear Implants

    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.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #23
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    Default Re: baha hearing loss questions

    What testing is done before being able to get a BAHA?
    Life is a Gift~ Lilly

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    Default Re: Ear Implants

    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
    Life is a Gift~ Lilly

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    Default Re: baha hearing loss questions

    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.

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    Default Re: baha hearing loss questions

    Quote Originally Posted by Lilly View Post
    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.
    Last edited by drz; 05-30-2018 at 09:37 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  11. #27
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    Default Re: baha hearing loss questions

    Quote Originally Posted by Alaskatom View Post
    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
    Life is a Gift~ Lilly

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  13. #28
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    Default Re: baha hearing loss questions

    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)
    Last edited by Helen; 06-08-2018 at 04:21 PM. Reason: spelling
    Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence - Helen Keller

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  15. #29
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    Default Re: baha hearing loss questions

    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
    Life is a Gift~ Lilly

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    Default Re: baha hearing loss questions

    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...

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