Newbie from the US

[Debbie from US]

Hi, I just discovered this forum and hope there are some Bonebridge recepients on here who can share their experience with me.  I have SSD in my right ear from Meniere's.  I knew my hearing had been getting worse, but I hadn't had an audio exam for several years until this past spring when I had a very bad recurrence of vertigo and sought out a new ENT, since I had moved.  Testing showed that I had profound loss now with very low speech recognition in that ear and was told I was officially SSD.  I was given the option to trial a CROS aid for 6 weeks, which I did, but was not satisfied with it.  It was then that I revisited the surgeon who suggested a BAHA.  I was scheduled to have the surgery for that next month,  but the surgeon called me back last week to discuss receiving a Bonebridge instead as they had recently been approved for use in the US (don't know why the FDA is so slow!) and she &  the audiologist feel I am a good candidate.   I am now scheduled to receive the Bonebridge on Dec. 13th- an early Christmas present!!.  I am excited about it, but somewhat apprehensive as well, as I will be the first person my surgeon has implanted and the first Bonebridge recipient at this hospital (Duke in NC).  I am not concerned about the surgeon's skill- she does CI surgeries all the time &  I figure this will be much easier than that.  It  just would be nice  to hear some first hand accounts of the recovery from the surgery and how well it is working once the processor is activated.  Thanks.

[Mary Beth]

@Ivana Marinac is our BoneBridge expert!

[Ivana Marinac]

Huh, well... Hello Debbie,

there are few problems before making any conclusion.

1. How low is your hearing threshold at the affected ear?

2. Are your symptoms yet visible (and hearable) at just one ear?

To make an explanation behind my questions:

1. A hearing threshold is goong up and down, and we still don’t know how much it will go down in certain presentation.

2. Meniere could be uni-lateral, but also there are very often bilateral cases of presentation and, to be honest - these presentations frequently are not synchronous. This mean, at first is affected one ear and then it reveals on the other.

I am writing this at first to underline the importance of careful evaluation of proper implant in a - measure of time.

Second, and lighter part of the story:

depending of how low your hearing threshold is now, you can expect the summation of hearing effects. People who has a really bad hearing loss reported that has certain improvement, especially in loud settings of bars and restaurants.

If ear is not deaf 100% you can have the ability of direction also.

From the aspect of difference between BAHA and Bonebridge - although I was not given a choice, I would choose Bonebridge again simply because I have never had any side-effect common much frequently (since with BB it is 0%) with BAHA: in situ infection, sticking out of head, urge to be careful with sport activities, no water-activities with BAHA (there’s no water-resistant cover on the market). 

If there are further questions - please, just ask! ??

[Debbie from US]

Dear Ivana,

Thank you for your response as I was told you are the "Bonebridge expert"!  A bit of history-  I was first diagnosed with Meniere's in 1995 and it has always been unilateral, thankfully.  I know the loss can be fluctuating with Meniere's, and that has been true in the past.  At one point, in about 2006, after a period of numerous vertigo episodes, it had degraded to a point where I started wearing an aid.  But after about 6 months I felt it wasn't working well, returned to the audiologist and discovered that my hearing had recovered to a level where the aid was no longer needed!  Since that time I had sensed a slow progression downward.  About 7 years ago I visited a new ENT who told me he thought the Meniere's had run its course and the loss at that point was permanent and I probably would not suffer from any more vertigo.  Yay!  All was stable until this past Spring.  I had planned to see a new audiologist and get a new aid when I suffered a severe vertigo "attack".  Since we had retired to a new state I needed to find a new ENT.  I went to a very well respected medical center- Duke in NC- and had a complete audiological & balance exam.  My audio exam report reads " Right ear- Severe 125-250Hx, rising to moderately severe, sloping back own to profound 6000-8000Hz, mixed hearing loss.  Left ear- WNL 125- 600 Hz sloping to a mild hearing loss at 8000Hz"  Speech recognition in right- 24% at 95dB and left 96% at 70dB,  asymmetry noted for all tested frequencies."  Otoacoustic Emission Testing , Comprehensive Diagnostic Protocol 1.6-8kHz absent in right ear, partially present through 56kHz in left.

Much of the report is too technical for me, but I hope I've included enough that you can understand my level of loss.  If I use earbuds to listen to music or audiobooks I hear nothing in my right ear, but very well in  my left, so I just leave the right bud out.  I have found social situations increasingly unpleasant- too much noise causes the tinnitus to increase and the struggle to hear anyone on my right side exhausts me and gives me a crick in my neck from twisting around so I can hear with my left!  One on one with people is fine if they are in front of me, or on my left.  I don't usually have trouble watching TV or movies- unless they have thick accents.  My surgeon is very optimistic that the BB will help me and is a better choice now than the BAHA.   So, based on all of this information, what do you think?

[Mary Beth]

Hi @Debbie from US

I am not a BoneBridge expert....smile.  But I did have Meniere’s Disease in my right Ear subsequent to three failed surgical attempts to address otosclerosis.  In the end I had a right transcanal labrynthectomy so that my right inner ear could not tell my brain I was dizzy.  We knew that surgery would result in no remaining hearing on that side, but it did cure my balance and vertigo problems.  After 24 years of not hearing anything at all in my right ear, we implanted it with a cochlear implant.  The results have been phenomenal.  It is an amazing hearing ear now.  It required a lot of aural rehab after activation but every moment of training was worth it.

I am wondering if your surgeon and you have discussed a cochlear implant in your right ear?  Just curious.  I like learning from everyone’s hearing journeys.

 

Completely off topic.....When you listen to music with earbuds and only insert your left side, you will find that music sounds better if you go into your phone settings and set it up for mono left side only.  Some musical tracks deliver different sound to the right and left earbud.  For those tracks, you are not receiving the complete music audio.  Just a suggestion.

 

Duke is a well known center.  I am glad you are at a great hearing center.  Wishing you the best.

[Debbie from US]

Mary Beth,

 Wow- you have sure been through a lot!!  I am glad that you now have good hearing in that ear again- that's amazing after all those years.  

I did say something about a CI to my surgeon and she said it wasn't indicated for SSD and is not approved by FDA for that, so no insurance coverage.  She said she felt the BB would be the best option.  

I see that you had your surgery in NYC.   I used to live in NJ and saw a Dr. in NYC - Sujana Chandrasekhar. She really helped me a lot when I was suffering with the vertigo.   When I first went to Dr. Tucci at Duke she noted on my records that I had seen Dr. C and told me they are good friends.  I guess the world of female neurotologists is not that large!

Great tip re. the ear buds.  I don't listen to music with them as often as audio books, but I will make that adjustment in my settings.  That never even occurred to me!

Thanks for your good wishes.   It is nice to be able to connect with people who have had similar problems.  People with good ears don't appreciate how much being deaf in one ear can impact your life. 

 

 

[Mary Beth]

@Debbie from US

Thank you for your kind words.

This forum is full of great people.  It’s a very understanding, friendly and helpful group.

I am not aware of the FDA status on CIs for single sided deaf adults in the US, but as a Teacher of the Deaf I am aware of children with single sided deafness who have recently received CIs.

@VeroNika is a dear friend who is single sided deaf with a CI from Europe.

If you are interested in pursuing a CI for single sided deafness, your surgeon may be aware of clinical trials that may allow you to do so.

Remember that my point of reference is with progressive hearing loss bilaterally so that is always in the back of my mind when people mention changes in their hearing levels over time.

 

I saw a picture last year taken at a conference for neurotologists   and it was all the female neurotologists   who were present.  One of my CI surgeons is female (Dr. Ana Kim) and she was in the picture. I bet your surgeons were in that photo too.  If I find it, I’ll post it for you.

[Mary Beth]

@Debbie from US

Here is a similar picture to the one I saw...

 

 

[Mary Featherston]

@Mary Beth, how cool, my doctor's in that photo!  She's sixth from the right, an Asian-American woman with glasses, Dr Tina Huang, and she's wonderful.

[Mary Beth]

@Mary Featherston

My CI surgeon for my second side appears blocked in this picture, so here she is...

Dr. Ana Kim did an amazing job on my left CI.

 

 

[Mary Featherston]

@Mary Beth I have been grateful to have been referred to such an accomplished surgeon:  https://www.ent.umn.edu/bio/ent-faculty/tina-huang

[Mary Beth]

Women in neurotology 2017 photo

 

 

[Mary Featherston]

Oh, that's a better picture.  And I see Dr. Huang again too!

[Debbie from US]

My Duke Doc- Dr. Debara Tucci is in the top photo (8th from the left) and my NYC Doc- Dr. Sujana Chandrasekhar is in the next one (right in the middle behind the banner.) Its wonderful to see so many bright young women joining this field which has been dominated by men for many years. 

[Mary Beth]

@Debbie from US

 

We haven’t followed many people’s BoneBridge journeys on HearPeers yet.  Your surgery is mid Dec.  Do you know how long you have to wait between surgery and using your processor?  Will you be using the Samba?

[Debbie from US]

The Dr. Said as soon as 2 weeks following the surgery, depending on the healing. She said if there is still swelling they would have to wait. I am going on vacation on Jan 2, so I am hoping I can get it before I go away, but that may be too optimistic. 

[Debbie from US]

And Yes, the Samba is what I was told I would be using.

[Mary Beth]

I hope the timing works out before your vacation.

Wishing you the best!

@Debbie from US

[Ivana Marinac]

@Debbie from US

hello again, 

pardon me for not involving myself before for a response.....

Mary Beth was on the path I wanted to explain, you are a classic (up to now) patient for a single CI which would really revive your hearing on the affected side.

I stand behind this although Prof.Tucci is on the other side - she’s really a giant in this world of implant technology. 

But, I have seen people fron the U.S. getting unilateral CI - I don’t quite understand your conditions but I have taught that everything is not possible only - if it is not tried.

Regarding me, I am “the expert” because I wear them now more than 5 years. My professional skills (I am an ENT in Europe) allow me to understand the problem from the scientific and health side, but financial part is pretty cloudy for me.

My indication for the implantation was a classic conductive hearing loss. Regarding you, there is no doubt you will have certain benefits, although I am known for “chasing the stars” so I always prefer the best possible, not the best accessible solution for a patient.

Good luck - please let us now a out your experiences! 

If there is anyhow I can help..... please, just ask!

[Debbie from US]

Ivana,

Thank you for your response. It is nice to know that Dr. Tucci is considered a giant in the world of implants! I knew she had a good reputation, but didn’t realize she was known internationally. I am happy to know that I have placed myself in very good hands!

I know that the CI is being done in the US for unilateral loss, but it is  considered experimental and is not approved by the FDA for SSD.  The BB just recently received FDA approval in the US, even tho you’ve had it in Europe for a number of years. So it may be some time before the CI is more commonly used for those suffering with SSD here.  The FDA can be very slow to give approvals, which in many instances is a good thing, but not always. 

I think the CI may be used more often in children here as an aid in speech development. That’s just a guess based on some things I’ve read so others may have more accurate information.  But I actually mentioned to Dr. Tucci that I had read about CI being used for SSD and she shook her head and told me I would not want to have that.  I took her to mean that she felt the BB could be as helpful for me without such an involved surgery and rehabilitation. 

It is good to know that you have had a good result with the BB, even tho your loss was of a different type than my own. The audiologist told me that the BAHA gave better results to those with conductive loss rather than SNL. But I am choosing to be optimistic about what my result will be with the BB. I am sure it will at least be better than the CROS aid that I tried and hopefully a lot better!

Thanks again for your input and good wishes. I will update you all as I continue on this journey.

Debbie

[Mary Beth]

@Debbie from US

 

Great that you already had discussed CI with Dr. Tucci and know that she recommends BoneBridge for you.

 

I am excited to follow your BoneBridge journey.

 

You must be counting the weeks!

[Debbie from US]

 Actually counting the days! 28 from today! 19 days until I go for a CT scan to aid in the placement. Feeling excited when I think about it. But it’s good that this is a busy time of year so there are lots of distractions to keep me from thinking about it too much. 

[Mary Beth]

It will get here quickly!

[VeroNika]

Oh no. I just wrote a nice reply and now it's a gone! Hm. Will start again....

So: Welcome @Little_chooky to Hear Pears!! I'm sorry to hear about your sudden hearing loss!! As @Mary Beth mentioned I am single sided deaf (SSD) on my left ear as well. I was born with regular hearing, turned deaf around age 3,5 (unknown virus) and was not fitted with hearing aids for the next 18 years as it was believed that my hearing nerve is damaged.long story short: my nerve is fine and thus I got my cochlea implant aged 21 and am a very happy CI user since 2011! ? So I know both sides pretty well - living with SSD  with no assistance as well as using a CI. So what are you most interested in at the moment - getting to know more about coping strategies I use(d) or how and to what extent the CI is helping me in my daily life? Just let me know and I'll do my best to assist!  ? However I am Austrian - as Ausreians we often get confused with Australia so there is a habit of t-shirts saying "no cangaros in Austria" ? - so please bear with my english... ?

Cheers & all the best, Veronika

[VeroNika]

2 minutes ago, VeroNika said:

Oh no. I just wrote a nice reply and now it's a gone! Hm. Will start again....

So: Welcome @Little_chooky to Hear Pears!! I'm sorry to hear about your sudden hearing loss!! As @Mary Beth mentioned I am single sided deaf (SSD) on my left ear as well. I was born with regular hearing, turned deaf around age 3,5 (unknown virus) and was not fitted with hearing aids for the next 18 years as it was believed that my hearing nerve is damaged.long story short: my nerve is fine and thus I got my cochlea implant aged 21 and am a very happy CI user since 2011! ? So I know both sides pretty well - living with SSD  with no assistance as well as using a CI. So what are you most interested in at the moment - getting to know more about coping strategies I use(d) or how and to what extent the CI is helping me in my daily life? Just let me know and I'll do my best to assist!  ? However I am Austrian - as Ausreians we often get confused with Australia so there is a habit of t-shirts saying "no cangaros in Austria" ? - so please bear with my english... ?

Cheers & all the best, Veronika

Oh, and now I just saw, that after rewriting the post I added it to another topic than intended, sorry...? This post of mine was meant for the Australian new post...but maybe it'll help here as well?however I will ty to get it to the other post as well...?