Help!!! New BB implant activation.

[Juanita]

I've been having issues since getting the device activated (and everyone decided to go on vacation the same day I got activated so I can't go back to the clinic for help).

 

First off, I was never told that I needed a separate device to connect to my computer so I could work. I asked multiple times and was never informed of this. I am now left not being able to work because my headphones rest right on the implant and it is PAINFUL.

Does the pain go away or will I always have discomfort with pressure over the implant?

 

Also the device itself is causing a lot of pain and I can only wear it for maybe 1 hour a day before the pain at the site and headaches are too much.

 

And my sound quality SUCKS. I find it echoes and sounds almost hallow. Is this normal? Is it something that is easily fixed?

 

I have to wait 2 weeks before anyone is back in the office and I feel lost. I was misinformed about  the device and now I don't know what to do.

[Kara of Canada]

Hi you have come to the right place Dr Ivana will be here soon. She has a BB and is very knowledgeable with it.

[Ivana Marinac]

Hi you have come to the right place Dr Ivana will be here soon. She has a BB and is very knowledgeable with it.

Hi Kara - thank you and Mary Beth for contacting me, I was at the vacation where internet signal is low. I barely can red FB

[Ivana Marinac]

I've been having issues since getting the device activated (and everyone decided to go on vacation the same day I got activated so I can't go back to the clinic for help).

First off, I was never told that I needed a separate device to connect to my computer so I could work. I asked multiple times and was never informed of this. I am now left not being able to work because my headphones rest right on the implant and it is PAINFUL.

Does the pain go away or will I always have discomfort with pressure over the implant?

Also the device itself is causing a lot of pain and I can only wear it for maybe 1 hour a day before the pain at the site and headaches are too much.

And my sound quality SUCKS. I find it echoes and sounds almost hallow. Is this normal? Is it something that is easily fixed?

I have to wait 2 weeks before anyone is back in the office and I feel lost. I was misinformed about the device and now I don't know what to do.

Hell Juanita,

I will try as much as it is in my power...

1. Bonebridge is connecting with phone or comeputer theough the Bluetooth link and over BT streamer: Siemens miniTek.

I am wondering how yours BB does not squeal when it is pressed with a headphones?

Possible help could be if you buy a headphones which has a hole in the center so it just surrounds the processor.

2. Have you got various magnets for changing the strength of BB atachment?

Can you look into your package?

There is also a YT short movie how to change it at home.

3. Unfortunately, echoes are results of poor tunning - I am not sure if your audiologist asked you but I always ask if I can go for a walk so I can be sure that setting is ok with me. Tunning of BB in the quiet environment can be tricky...

[Juanita]

Thank you for responding so fast.

 

I can't use the device at all with my headphones. I was just trying to work like I had before without the device. I had bought headphones that had a higher than normal volume because of my hearing loss (I still couldn't hear that well, but they got me through), but the headphones put pressure on the implant so I can't even wear them without the device. 

 

I didn't get any other magnets. I got a bunch of covers and the hair clips and the activity magnet. I guess that must be something I have to go back to my audiologist for.

 

I am glad to know that the sound quality is just a programming thing. He had me in a soundproof closet and I didn't really have a chance to test it outside the room. That is a good idea for next time though. I will make sure to take a little walk around before deciding the sound is ok. Also this was my first time having a hearing aid so everything sounded weird to begin with.

[Ivana Marinac]

Thank you for responding so fast.

 

I can't use the device at all with my headphones. I was just trying to work like I had before without the device. I had bought headphones that had a higher than normal volume because of my hearing loss (I still couldn't hear that well, but they got me through), but the headphones put pressure on the implant so I can't even wear them without the device. 

 

I didn't get any other magnets. I got a bunch of covers and the hair clips and the activity magnet. I guess that must be something I have to go back to my audiologist for.

 

I am glad to know that the sound quality is just a programming thing. He had me in a soundproof closet and I didn't really have a chance to test it outside the room. That is a good idea for next time though. I will make sure to take a little walk around before deciding the sound is ok. Also this was my first time having a hearing aid so everything sounded weird to begin with.

 

Well...

 

It`s those small things which nobody actually pay attention before it happens...

 

1. There are different types of magnets which differ according to their strebgth because not all people have same width of temporal flap. For instance, I need max number - other ways, my outer processor fell down.

 

2. Unfortunately, headphones does not work out like this or at least you should go to the electronic store where they have huge collection and try a lot of them in a way I have described you before: no press to the outer unit and the outer processor should "nest" in the one headphone. Or the solution with miniTek which, has its own problem - miniTek should be pretty close to your BB (on your neck).

You do not need any special amplification, BB can amplify everything pretty loud.

But there is another catch in the story: what kind of hearing loss do you have: unilateral or bilateral? SIngle-sided hearing loss or bilateral? Is it conductive or sensorineural - this is important for me to understand where is actual problem: not all hearing losses are same... Actually, there is pretty difference.

 

3. BB is really sophisticated and have lot of possibilities - so you have to thoroughly test it and compare with what you find it is normal. And than say to your audiologist: I would rather like more basses... Or I do not understand in noisy environment... You need to have - patience.

It is not just like because we or our audiologists didn`t do something right - it is because our hearing capabilities can change a lot - that is why BB IS NOT an AID than it is an IMPLANT: it changes the way we hear and improves our hearing capabilities. For instance, I was implanted on my unaided side before (I worn a real hearing aid before) - I needed almost 2 years of constant tunnings to get myself where I am now. My ear was not accustmed to all hearing I can possibly get so my hearing level should be raised step by step looking for a real combination. I still need some modification from time to time but finally I reached what I define like my normality.

[Juanita]

I have bilateral conductive hearing loss. I was implanted only on the left sided. I have never used any hearing devices before so this is all very new to me. My hearing loss was from multiple ear infections as a baby and I had 3 mastoid surgeries and I had 2 bones in my right ear replaced when I was 4.

I will probably never find headphones to work. My implant is up a little high from my ear and just getting headphones to stay in place will be a challenge.

Apparently it is really hard to get a minitek around here and my local clinic is going to try to order it in. Apparently they've all gone to easytek now.

This makes me worry now because they told me there are a lot of connecting issues with the minitek and the audio streaming is not the best. Plus battery life during streaming isn't the best. I am not too worried about regular day use in that regard, just work (which is extremely important).

I just noticed that there is a lot more swelling in the area now. I am only 4 weeks from surgery and the doctor said he had tried a smaller outside incision on me and had to stretch the skin and muscles quite a bit to fit the device in so that could be the cause of the pain too. I had a lot of pain right after the surgery. More than the doctor was expecting.

[Ivana Marinac]

   

 

How did you function before this, Juanita? How bad is your hearing loss? My curve is between 60 up to 70 dB.

 

I am not familiar with easyTek - it seems that both are streamers but I do not understand the difference. 

Taking into account that fact, it will be even more important to resolve that issue either with miniTek or easyTek.

But - there is also another solution for a people with conductive hearing loss - Aftershokz headphones which use our bone-conduction ability to hear. 

People who have BAHAs say that they are satisfied: http://aftershokz.com/

Connecting issues with miniTEK is due its distance of outer unit. Like I said, it has to be worn high on the neck. A problem is that streamers are not model specific so your miniTEk theoretically could disturb mine if we sit together or somebody else˙s hearing aid if it happens that he or she uses the Siemens model. That is why they cut the range. 

I do not observe such a fast battery deterioration because I do not hear music so much over the headphones, just for my running sessions.

miniTek is made also for phone calls but I can easily hear directly putting my iPhone over my outer unit so this does not worry me.

 

Regarding the incision, my cut was cca 4-5 cm - I had substantial intraoperative complications due to the placement of device because of anatomy (low dure, high sigmoid sinus, steep occipital bone...) so my device needed to be secured with maxillo-facial plate.

But I did not have any issue - I even did not need any painkiller. But, yes - swelling is substantial and it is normal; it will be better - usually for 2-3 months everything will be as before. Swelling is, however, individual patient factor.

[Juanita]

The first time I saw the doctor performing the surgery he was shocked too. He couldn't understand how I managed to function day-to-day.

My curve is from 60 to 80 dB with high pitch being the worse. I always did very good in school. I missed a lot of what my peers were saying around me, but I just struggled it off. A lot of people didn't realize I had a hearing problem (they just thought I was stuck up or bitchy).

 

I will have to look into the Aftershokz headphones. I hadn't seen those on my quest for headphones for work. That might be a better option for me. It is certainly worth a try. I see I can get a pair for fairly cheap (cheaper than my $200 ones I bought).

 

I needed painkillers for over a week. I felt like someone had taken a brick to the side of my head. It was just really bad jolts of pain that wouldn't go away. The pain meds took care of the pain for about 2 hours and then it would start coming back. I took a pain pill every 5 hours and regular Tylenol every 6 hours. The pain had gotten better, but now with use of the device it is getting worse (not as bad as initially, but getting there). The headaches are the worse. After about an hour total use (I wear the device for 15 to 20 minutes at a time with breaks) the pain comes and I have to leave it off for the rest of the day and usually need Tylenol for headaches and pain.

[Ivana Marinac]

Aftershokz uses bone conduction - people mostly use it for a music but you can always try to see how it functions with a speech.

I can ask some people

 

60-80dB?!? I am also shocked      Did you lip read or what?

People's opinion stopped worry me long before - I just didn't feel that I have to explain everybody everything, can they use their brain or is it just sponge?!

How difficult it can be to think that someone beside possibly have hearing not mental problem??? 

 

Do you use appropriate painkiller? You should stop wearing it - I thoroughly suspect that your pain is not from the operation than because of too strong magnet or even because of headphones' pressure... How long after the operation did you started to use outer unit? 

[Juanita]

Yes I read lips a lot. If I am not looking at your face it is a lot harder for me to process what you are saying unless you speak up. My family have all just learned to talk louder around me so I never struggled at home. At school I was a good student to begin with (though I do wonder if I was actually able to hear what was actually going on it might have done better).

 

I did struggle when I started university and that probably would have been the point I would have needed to get a hearing aid, BUT I broke my foot and couldn't walk for over a year and had to drop out. That was the 1st time in my life I felt like my hearing (or lack thereof) was hindering me. It only happened once more when I took a teller job at a bank. I ended up just quitting because I felt like I couldn't do it.

 

A friend of mine told me to try out moleskin until I can get to the clinic to change out my magnet. My husband thinks that is the problem too.

 

Thank you so much for your time replying. It is nice to have someone there. I felt pretty lost and alone.

[Kara of Canada]

We enjoy hearing from you too! Just for the sake of talking since I'm a CI and you're BB. Please feel free to talk as much as you need. I'm kind of in the same spot. Don't work and usually spend my time helping others here and listening.

[Ivana Marinac]

Yes I read lips a lot. If I am not looking at your face it is a lot harder for me to process what you are saying unless you speak up. My family have all just learned to talk louder around me so I never struggled at home. At school I was a good student to begin with (though I do wonder if I was actually able to hear what was actually going on it might have done better).

 

I did struggle when I started university and that probably would have been the point I would have needed to get a hearing aid, BUT I broke my foot and couldn't walk for over a year and had to drop out. That was the 1st time in my life I felt like my hearing (or lack thereof) was hindering me. It only happened once more when I took a teller job at a bank. I ended up just quitting because I felt like I couldn't do it.

 

A friend of mine told me to try out moleskin until I can get to the clinic to change out my magnet. My husband thinks that is the problem too.

 

Thank you so much for your time replying. It is nice to have someone there. I felt pretty lost and alone.

 

Still amazing that you have never got a proposition to contact any audiology service. Things were far from ideal, but sort of amplification which would help you existed before.

I used it - a modified hearing aid on the headband. Bonebridge is far more superior but even my modified HA gave me opportunity to educate myself although I had a lot of problem in social communication. So, I have never learned how to lip-read.

 

Well - you can try it although I am not sure how well the signal transmission will be if your outer unit do not properly attach to the internal part.

This is an easy solution for your problem - How to change the magnet on Samba: 

Can you contact a local contact-point of Med-EL - maybe they can help you until your audiologist do not return to the office? 

 

Not a problem at all - pleasure is all mine if I can help at all. I am sorry to hear that you struggle so much. Please, write more here - I will try to give you tips which I have collected during my walk "...through the valley of the shadow of death...". I was also lonely taking into account the kind of implant, but I found here people who were willing to listen me and discuss with me a problem. In return, I have learnt a lot about deafness and cochlear implantation but also about how human spirit can conquer lots of odds.

[Juanita]

The problem is where I am there are not other places to go for support. Everywhere only deals with regular hearing aids. I have contacted the company and they said to go to my local BB clinic. So I wait.

I got my device about 3 weeks after surgery (my surgery was a month ago today - July 6th).

I was offered MANY MANY hearing aids in my life, but I was always told with my many ear infections and my hearing problems that traditional hearing aids wouldn't work. The BAHA scared me. I was suppose to be the first to get it around here, but I was a kid and didn't like the idea. There wasn't any supports around then and I had it worked up in my head so I never got it. Then I started my new job 3 years ago. I loved it, but my hearing was becoming a HUGE issue. That's when I met my surgeon and the process started. He was suppose to try to do a corrective surgery to see if he could get my hearing back without the use of an aid, but in the surgical planning he started to get worried and didn't feel as sure of himself (he actually said he chickened out).

 

The magnet looks super easy to change. I wish they would have given me an extra one to be able to do this with. I have a good feeling the magnet is the problem too.

[ColinY]

Yes I agree it is a shame they do not provide you with the magnet driver and spare magnets.

[Ivana Marinac]

The problem is where I am there are not other places to go for support. Everywhere only deals with regular hearing aids. I have contacted the company and they said to go to my local BB clinic. So I wait.

I got my device about 3 weeks after surgery (my surgery was a month ago today - July 6th).

I was offered MANY MANY hearing aids in my life, but I was always told with my many ear infections and my hearing problems that traditional hearing aids wouldn't work. The BAHA scared me. I was suppose to be the first to get it around here, but I was a kid and didn't like the idea. There wasn't any supports around then and I had it worked up in my head so I never got it. Then I started my new job 3 years ago. I loved it, but my hearing was becoming a HUGE issue. That's when I met my surgeon and the process started. He was suppose to try to do a corrective surgery to see if he could get my hearing back without the use of an aid, but in the surgical planning he started to get worried and didn't feel as sure of himself (he actually said he chickened out).

 

The magnet looks super easy to change. I wish they would have given me an extra one to be able to do this with. I have a good feeling the magnet is the problem too.

 

Interesting... Since this is sort of medical emergency - too strong magnet can actually make a lot of problem even flap failure which lies over the internal part. What kind of support is then that if there is no available audiologist...?

 

You mean, they offered you hearing aids but you have had recurrent ear infections? You could have a BTE but without occlusion of the ear canal so your infection do not repeat. Problem of stopping the middle ear infections is in aeration of it. Something like a wet closed buildings - first thing should be done: to open windows.

 

Regarding BAHA - I understand you. I was offered also BAHA 10 years before the BB but it was awkward to me have an abutment... And to properly take care of it - brush it etc. I have even tried BAHA on the headband but I was not satisfied with sound quality so I did not proceed.

It's better that he made such a step than you had some irreparable difficulties after possible surgery - a good surgeon should knows when to stop her- or himself. This is a rule Nr. 1. Even an elephant knows how to enter into the glass room but - does he know how to get around or when to stop? Hope I presented the point well.

 

Not sure, but magnets should be in your home-kit. You really do not have to go every time to your audiologist just to exchange a magnet...  

[Jannine]

I have the impression from my audiologist that the magnets were included in my pack BUT she did not provide me with them as the tool to change was NOT provided - so it was no point giving me the magnets.  Surely we should be given the independence we need - we are deaf - not dumb!!

[Mary Beth]

Jannine,

I am going to tag Leigh to see if she can help you with this.  Good luck.

@leighf

[Kara of Canada]

Ditto Jannine!! We aren't. So due diligence here. Keep up the good work!! 

[MED-EL Moderator]

On 3/19/2017 at 2:47 AM, Jannine said:

I have the impression from my audiologist that the magnets were included in my pack BUT she did not provide me with them as the tool to change was NOT provided - so it was no point giving me the magnets.  Surely we should be given the independence we need - we are deaf - not dumb!!

Hi Jannine, we recommend that your audiologist changes the SAMBA magnet, and so we recommend that they are provided with the magnets and the tool to change them. This is because the correct magnet strength should be assessed by the user together with the audiologist, to avoid it being too strong which can cause skin irritation. Hope that makes things clearer! (Thanks for the tag, @Mary Beth) Cheers, Leigh