From a VSB to BAHA..maybe.

Miaou

Miaou

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So here is a quick summary of what has been and is currently going on with me.

This past May I had implant surgery for the Med-el Vibrant Soundbridge in my right ear, connected to my cochlea at the round window (not the ossicles, my ossicles prosthesis was removed at that time too). The processor was activated a few weeks later, my hearing was tested and rehab started. All seemed good at this point, and I had noticeable benefit of the implant though not as great as the doctors had expected. September, I had another surgery in the same ear, unrelated to the implant (chronic ETD related issues).. On Christmas Eve, I had a new audiogram with and without the processor on. I have more hearing loss than before so I'm not really gaining benefit of the implant anymore, it's only tiny sound enhancement from my levels without the processor.

The next step, suggested by my Audiologist to me, is to research bone anchored implants. He said to talk to my surgeon to find out if the surgeon would or even can remove the VSB without causing too much damage to the round window area and such... My Audiologist also said that my surgeon isn't necessarily required to remove it at all but I'd have too much hardware in my head so that's something to consider too. Hmm?.. Yikes.

Anyway, the predicted improvement of a bone anchored implant is a huge increase of sound in the low frequencies but no added improvements for the other frequencies. I could end up with even further decrease of hearing as a result of surgery. So I'm back on the fence, not sure if it's worth all the risks anymore to keep trying.. I still have progressive but slow hearing loss in my other ear too(left side). I am finally looking into getting a decent hearing aid for the left side. But, I'm not sure what will happen regarding the benefits of BAHA types if my "good ear" ends up randomly and drastically dropping levels too. Ugh, I'm feeling a bit overwhelmed.

Hopefully, my post makes sense and I haven't left out too many details while trying to sum it all up.

(Edited for spelling correction.)
 
Miaou (that is adorable): In my earlier hearing days, I tried the bone-anchored hearing aid. They came with a headband and the processor squeezed my head so much, I felt it was in a vise. But the sounds ... I have never heard better in my life except having my head clamped was not good. It didn't work out.

BAHA (bone anchored hearing aid) is just what I said without a headband. That's replaced by a titanium screw or bolt and the BAHA clamps onto it. It's kind of big, so if that's your option, find out how clunky it might be. I had a doc in NYC recommend it. I compared my audiogram to what BAHA would support and it was just too late for me to consider it. I let the doctor know and I was pretty angry that he had the audacity to push for it (but for me, my bone conduction had just dropped way too much).

BUT the good thing about it is they can be removed - take out the titanium and you're good to go to something else. (Another inquiry for you to possibly make ... if the fit is bad, if it's uncomfortable, can it be removed under some sort of warranty.)

I went to an audiologist in Riverdale, NJ. I asked who does BAHA surgery (@15 years ago). She named two doctors. I asked who wouldn't try to talk me into useless surgery and one name dropped off. I stopped looking at BAHAs - I had been looking and researching it and it was enough. I don't know the success/failure rate. I know it is reinvented from the 1970s. It's a business. With any business done on your body, you're taking a risk. I can't guide you at all with this beyond what I've written. There are likely others here who can.

Good luck to you.
 
The good news about the BAHA, is that you CAN trial it, with a softband headband... they don't do the rigid hard headband any more......
And yes, I agree with NYNY.....Everyone responds very individually to technology whether it be BAHA, CI or HAs........ The BAHA was really obscure until a few years ago, when Coachlear acquired Entific (the Swedish maker of BAHA) With the right marketing it became a HUGE seller......and other companies started making BAHA.......even thou the marketing for this type of device is limited...... So I would take advantage of trialing it, and see if it works for you!
 
deafdyke said:
The good news about the BAHA, is that you CAN trial it, with a softband headband... they don't do the rigid hard headband any more......
And yes, I agree with NYNY.....Everyone responds very individually to technology whether it be BAHA, CI or HAs........ The BAHA was really obscure until a few years ago, when Coachlear acquired Entific (the Swedish maker of BAHA) With the right marketing it became a HUGE seller......and other companies started making BAHA.......even thou the marketing for this type of device is limited...... So I would take advantage of trialing it, and see if it works for you!
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I suppose when I was researching it (from the beginning to the present), all I had was what I got - a headache and a hard headband with great understanding. I would've loved to have been able to test the device (assuming it is the same processor (with some advancements)) gad ... I began looking in 1996ish and then took a break due to the quacks out there and tried some years later (but 2 more times separated by years).

A free trial with a comparable processor (key) is where I'd start. Except, DeafDyke, the OP is worried about it causing more hearing loss. I have no idea what could cause that.
 
Thank you for the posts in reply, y'all. That is pretty neat about the headband and trial thing with a bone anchored type device. I'll be sure to look into it that after I find out more from my Doctor & Audiologist. My Audiologist is coordinating an appointment sometime in February with him, a med-ed representative and myself to see if and what can be done with the current VSB implant I have(connected to cochlea not ear bones). I'm hoping there's some way to adjust it to better benefit me but with the decrease in my mixed hearing loss levels since implantation, I'm not holding my breath.. In the meantime, I have contacted DARS to see if I can get assistance with a hearing aid or something for my other ear.
Sorry if I'm repeating some things, I'm using my smartphone to read and reply and can't remember exactly what all I said before. :x
 
Miaou said:
Thank you for the posts in reply, y'all. That is pretty neat about the headband and trial thing with a bone anchored type device. I'll be sure to look into it that after I find out more from my Doctor & Audiologist. My Audiologist is coordinating an appointment sometime in February with him, a med-ed representative and myself to see if and what can be done with the current VSB implant I have(connected to cochlea not ear bones). I'm hoping there's some way to adjust it to better benefit me but with the decrease in my mixed hearing loss levels since implantation, I'm not holding my breath.. In the meantime, I have contacted DARS to see if I can get assistance with a hearing aid or something for my other ear.
Sorry if I'm repeating some things, I'm using my smartphone to read and reply and can't remember exactly what all I said before. :x
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You can refer to us as your older guinea pigs :) . (deafdyke, hope you're okay with my comment.) I think I've been through most of the old stuff that has finally improved or just changed and gotten worse. If a soft headband had existed when I was trying the bone conductive aid (circa 1989 and again probably in early 2000s), I would've bought it. You can't beat eating lunch in a noisy restaurant and telling your colleagues what's being said in the kitchen. What a kick that was for me.

Smart phone on the forums? It would drive me up the gazoo. We understand repetition and I get that way on my computer.
 
OT, but does anyone remember when they were hyping the MEI on the forums? I'm not sure if it was specificly THIS ONE, but they were raving about how it was SO NEW and amazing and had NO problems........Seems to have both sunk without a trace (most likely b/c not covered by insurance) and now people are popping up saying that it's not exactly as good as they thought, and looking into other devices.......
 
deafdyke said:
OT, but does anyone remember when they were hyping the MEI on the forums? I'm not sure if it was specificly THIS ONE, but they were raving about how it was SO NEW and amazing and had NO problems........Seems to have both sunk without a trace (most likely b/c not covered by insurance) and now people are popping up saying that it's not exactly as good as they thought, and looking into other devices.......
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My implant has been around Europe for like 30 years and works great for most people. Maybe you mean new to the U.S.?

Anyway, The reason it ended up not so great for me is that it's not really intended for mixed hearing loss, plus it's connected to the cochlea when the normal for it is to be connected to the ossicles. All this kinda changes things up. My doctor had attended some conferencesort and really thought I'd end up with better benefit though not perfect. Oh well, it's life. Now we go from here.
 
deafdyke said:
OT, but does anyone remember when they were hyping the MEI on the forums? I'm not sure if it was specificly THIS ONE, but they were raving about how it was SO NEW and amazing and had NO problems........Seems to have both sunk without a trace (most likely b/c not covered by insurance) and now people are popping up saying that it's not exactly as good as they thought, and looking into other devices.......
Click to expand...

What is MEI? When I put it in Google I get nothing that has anything to do with hearing. Please realize that not everyone reading your posts knows all the initials you use stand for.
 
It's Middle Ear Implants. They aren't as popular here as they are in Europe.
They tried reintroducing a particular MEI.... I forget which one it was.....but it BOMBED, mostly b/c the problem here in the states, is that we don't need new technology..... we need more affordable technology. I wasn't aware you were in Europe......
 
I'm in the States, but I did live in Germany for three years. My surgeon has also and is very knowledgeable and up-to-date with things here as well as abroad. :)
 
That's true to a point. For my ears, technology & research improvements are needed though. Most of the information and treatment options are very limited and geared towards children with temporary forms of chronic eustacian tube dysfunction, nothing has really been done to help adults with a permanent more severe version. All the surgeons can do is keep rebuilding my ear drums after the negative pressure from ETD destroys them and the bones more. I have very strong cartilage & muscle grafts holding the newest ear drum(right ear) in place now but me & my doctors fear it's only a matter of time before my body destroys that too. My ossicles were eroded too much to save them as a result of the ETD as well. My surgeon had to put a ossicles prosthesis but later required it be removed due to infections caused by my ETD problem.

The mixed hearing loss I have (in the right ear) doesn't benefit much from the devices available today. Hearing aids have to be set too loud that it hurts, the MEI implants mostly require functional middle ear anatomy but I had to have my middle ear bones & then the ossicles prosthesis removed too, so that leaves the cochlea and skull to do the work of hearing. With my nerve loss part of the mix, I'm not a candidate for cochlear device either.

My left ear has ear drum retraction and a tiny perforation now too, it's how it all started in my other ear so I'm hoping some new research and technology is being worked on but who knows. I don't mind being deaf it's just I don't like the limitations I currently face. I have to make a career change at some point with no idea of what or where that will leave me as I haven't been able to decide on a study direction nor have the funds for college. I'd prefer to continue going up the ladder in my current job but it's not possible for me in the future with the technology available at this time once my left ear reaches the point my right one has.

Edit: at least there's hope for "some" benefit to me with a BAHA but even then not much from what I've been learning recently but I'll see what my surgeon thinks in a month or so. My Audiologist says it will only help some with low frequencies nothing more for me. I'll see what my surgeon thinks in a month or so though.
deafdyke said:
It's Middle Ear Implants. They aren't as popular here as they are in Europe.
They tried reintroducing a particular MEI.... I forget which one it was.....but it BOMBED, mostly b/c the problem here in the states, is that we don't need new technology..... we need more affordable technology. I wasn't aware you were in Europe......
Click to expand...
 
Miaou: My eustacian tubes were never fully developed. So, they were closed 99% of the time. My first real ENT (who knew what he was doing) said there would be surgery available years down that would allow them to be opened. That came when I was in college. First surgery under local and it was nasty even for toughie me. But I continued to do local after that whenever possible due to the harm from being put under completely.

deafdyke: Yes, we need affordable technology (but in our state of capitalism, I don't see that happening). The cochlear implant is sub-par with inconsistent testing results after being around for about 50 years or more of being in development. That technology should be corrected and I don't see that happening either.
 
NYNY said:
Miaou: My eustacian tubes were never fully developed. So, they were closed 99% of the time. My first real ENT (who knew what he was doing) said there would be surgery available years down that would allow them to be opened. That came when I was in college. First surgery under local and it was nasty even for toughie me. But I continued to do local after that whenever possible due to the harm from being put under completely.
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Wow, I didn't have an option to not be put under but it's painful enough upon waking so I can't imagine having it done under local. May I ask what they did to open them and if the tubes function now, or stay open, or what? Is that the source of your hearing loss, too? Forgive me if I'm asking too much, I'm just curious. I don't find many adults with ETD too, very often.

I don't know exactly how much my tubes work or if it's linked to the fact I was born premature or not. I just know every doctor and specialist I have seen through my life so far have all pretty much said they can't do anything. It stinks being told that there's no way to slow it down or cure it but there's far worse things out there than to lose hearing. I will mostly just miss music and nature sounds, and the occasional sports car engine/exhaust purr (hehe), and as stated before I'm not liking that I'll be having to adjust type of employment. I mean, I don't like working retail but I live in a small town where this company is the best to work for in terms of how things are ran and the attitudes of the management & employees, etc..
 
Miaou said:
Wow, I didn't have an option to not be put under but it's painful enough upon waking so I can't imagine having it done under local. May I ask what they did to open them and if the tubes function now, or stay open, or what? Is that the source of your hearing loss, too? Forgive me if I'm asking too much, I'm just curious. I don't find many adults with ETD too, very often.

I don't know exactly how much my tubes work or if it's linked to the fact I was born premature or not. I just know every doctor and specialist I have seen through my life so far have all pretty much said they can't do anything. It stinks being told that there's no way to slow it down or cure it but there's far worse things out there than to lose hearing. I will mostly just miss music and nature sounds, and the occasional sports car engine/exhaust purr (hehe), and as stated before I'm not liking that I'll be having to adjust type of employment. I mean, I don't like working retail but I live in a small town where this company is the best to work for in terms of how things are ran and the attitudes of the management & employees, etc..
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Miaou,
You’re perfectly fine asking questions.

General anesthetic made me pretty nauseous and that was tiring. Then I’d have to ask for an anti-nausea drug and I hated those. With this surgery, they (NY Eye, Ears, Nose and Throat Hospital) went in and up and down through my nose with something probably pretty nasty to open up the tubes. I remember the fear and the blood. It didn’t hurt but it was nasty because I never had so much blood coming out of me before, it seemed. What does “work” mean … I was rolled out, my dad was there as he was for most of my surgeries and he started crying when I spoke. (A college friend was there, too.) Dad could hear me without effort for the first time in our lives. That was an indication the surgery worked. It was also the first and last time I witnessed him crying obviously for joy.

Back in those days and well into my 40s+, I’d hold my nose and blow to pop my ears. I figured it increased some frequencies @10dB and that was great to me.

I got lucky, Miaou. Since I managed to pick myself up after we moved to NY, I fought hard to excel in something – anything. I left my friends who knew and accepted me very far behind in another state. My grades turned around (dean’s list) and I did well doing shorthand and typing. So, my career focus was secretarial. But when I finally took some related courses in college, I hated it. It was more fun to dress up prim and proper for class and arm wrestle a friend in back of me before it started. I just followed what was before me. I was good learning how machines worked quickly and it logically took me into infotech. Coding wasn’t a big deal and there were so many different things available at that time for me to do.

I can’t even fathom working retail.

With the CI, not hearing the clarity of music hurts me mucho. I grew up going to Broadway shows. I grew up with bands coming to our home and my brother jamming on his string bass or piano. Singing – we all sang and I’m not tone deaf. In my first year in college in my music class, we learned to recognize classical music and I did really, really well in it. So, I have a major problem when someone’s playing music or singing. I drift back through my memories to “hear” it and it’s on key as opposed to the CI deli-processed sounds.
 
NYNY said:
Miaou,
You’re perfectly fine asking questions.

General anesthetic made me pretty nauseous and that was tiring. Then I’d have to ask for an anti-nausea drug and I hated those. With this surgery, they (NY Eye, Ears, Nose and Throat Hospital) went in and up and down through my nose with something probably pretty nasty to open up the tubes. I remember the fear and the blood. It didn’t hurt but it was nasty because I never had so much blood coming out of me before, it seemed. What does “work” mean … I was rolled out, my dad was there as he was for most of my surgeries and he started crying when I spoke. (A college friend was there, too.) Dad could hear me without effort for the first time in our lives. That was an indication the surgery worked. It was also the first and last time I witnessed him crying obviously for joy.

Back in those days and well into my 40s+, I’d hold my nose and blow to pop my ears. I figured it increased some frequencies @10dB and that was great to me.

I got lucky, Miaou. Since I managed to pick myself up after we moved to NY, I fought hard to excel in something – anything. I left my friends who knew and accepted me very far behind in another state. My grades turned around (dean’s list) and I did well doing shorthand and typing. So, my career focus was secretarial. But when I finally took some related courses in college, I hated it. It was more fun to dress up prim and proper for class and arm wrestle a friend in back of me before it started. I just followed what was before me. I was good learning how machines worked quickly and it logically took me into infotech. Coding wasn’t a big deal and there were so many different things available at that time for me to do.

I can’t even fathom working retail.

With the CI, not hearing the clarity of music hurts me mucho. I grew up going to Broadway shows. I grew up with bands coming to our home and my brother jamming on his string bass or piano. Singing – we all sang and I’m not tone deaf. In my first year in college in my music class, we learned to recognize classical music and I did really, really well in it. So, I have a major problem when someone’s playing music or singing. I drift back through my memories to “hear” it and it’s on key as opposed to the CI deli-processed sounds.
Click to expand...

Thank you for sharing your story. I'm glad the surgery worked for you, I can only imagine how emotional the experience was for you all. That's awesome!

My doctors always tell me to hold my nose and blow in attempt to pop my ears but it never works for mine. I don't even feel my ears having built up pressure or pop when flying in planes and such.. Only pain from perforations, when they happen and/or early signs of infections.. Since my most recent cartilage graft repair surgery I've been battling constant tinnitus and aches, I was told the healing process from my VSB alone takes up to a year or so then several months on top of that for the surgeries I had following so I suppose I just need more time to heal.

I began my studies in Business Management, Real Estate & Psychology years ago when my son was young but I put it on the back burner when my husband (now ex) deployed to Iraq three times.. Then, he had other duty assignments upon returning so that plus my need to be home with my son ended up being too much to balance with school. I wasn't really finding myself as interested in those study areas anyway though. I do well with computer related courses but can't seem to find my particular interest area there either. I guess I just need to pick something and go with it again. Hehe

Yeah, retail can be pretty terrible at times regardless of hearing levels..

I'm sorry to learn that music and singing is painful to listen to with the CI, I'm glad the memories of music is there though. I hope my memories of music and such will last when I can no longer enjoy listening to it too.
 
NYNY said:
deafdyke: Yes, we need affordable technology (but in our state of capitalism, I don't see that happening). The cochlear implant is sub-par with inconsistent testing results after being around for about 50 years or more of being in development. That technology should be corrected and I don't see that happening either.
Click to expand...
Especially since we don't even have universal health care.....and the "improvements" to the current devices just seems to be put on b/c some Anal Old Person complained about it........
 
Miaou said:
That's true to a point. For my ears, technology & research improvements are needed though. Most of the information and treatment options are very limited and geared towards children with temporary forms of chronic eustacian tube dysfunction, nothing has really been done to help adults with a permanent more severe version. All the surgeons can do is keep rebuilding my ear drums after the negative pressure from ETD destroys them and the bones more. I have very strong cartilage & muscle grafts holding the newest ear drum(right ear) in place now but me & my doctors fear it's only a matter of time before my body destroys that too. My ossicles were eroded too much to save them as a result of the ETD as well. My surgeon had to put a ossicles prosthesis but later required it be removed due to infections caused by my ETD problem.

The mixed hearing loss I have (in the right ear) doesn't benefit much from the devices available today. Hearing aids have to be set too loud that it hurts, the MEI implants mostly require functional middle ear anatomy but I had to have my middle ear bones & then the ossicles prosthesis removed too, so that leaves the cochlea and skull to do the work of hearing. With my nerve loss part of the mix, I'm not a candidate for cochlear device either.

My left ear has ear drum retraction and a tiny perforation now too, it's how it all started in my other ear so I'm hoping some new research and technology is being worked on but who knows. I don't mind being deaf it's just I don't like the limitations I currently face. I have to make a career change at some point with no idea of what or where that will leave me as I haven't been able to decide on a study direction nor have the funds for college. I'd prefer to continue going up the ladder in my current job but it's not possible for me in the future with the technology available at this time once my left ear reaches the point my right one has.

Edit: at least there's hope for "some" benefit to me with a BAHA but even then not much from what I've been learning recently but I'll see what my surgeon thinks in a month or so. My Audiologist says it will only help some with low frequencies nothing more for me. I'll see what my surgeon thinks in a month or so though.
Click to expand...

Well overall as a population improvements aren't needed.....but you're right...there are specific subpopulations which could strongly benifit
 
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