Aussie with Single Sided Deafness

[Mark]

My name is Mark. I come from Adelaide in South Australia.

I have almost total deafness in one ear, although hearing tests say I still have a minor amount of hearing left in that ear. Not enough for me to recognise sound or for a normal hearing aid. The loss of hearing occurred about 20 years ago. I am currently considering a Cochlear implant (single side), but have not found anyone in Australia with whom I can compare notes. Neither have my audiologists. I understand that the longer it is since the hearing loss, the less likely that hearing from an implant will be successful. However, the small amount of residual hearing may be a positive sign. Interested to hear from anyone who may have had an implant in similar circumstances (successful or unsuccessful!)

I have the normal difficulties hearing in situations where there is background noise (restaurants etc) which may be exacerbated by tinnitus (also in the same ear), although the tinnitus does not normally bother me.

I have trialled a BAHA but it doesn't appear to be the solution. I am also aware of Bonebridge - is that likely to be a better system than a normal BAHA?

Many thanks to anyone who may be able to assist.

 

Edited May 9, 2018 by Mark
Added request re Bonebridge

[Daniel the Stranger]

Hi @Mark I'm not Aussie but I have been living in Adelaide for 11 years now.

I have been bilateral deaf since I'm 4 years old and using hearing aids since I'm 7 years old more or less. I'm 41 years old now. I just went to surgery for CI last Friday for my right ear so I can't give you feedback in regards to the worthiness of CIs vs HAs. 

Do you mind telling me which Audiologist are you seeing and where? I'm very happy with mine, also with the doctor who did the surgery. It is strange that your audiologist can't find anyone for you, mine offered me to meet their patients who already have CI if I wanted more information about the whole process.

Meanwhile, you can read this blog https://2earsarebetterthan1.wordpress.com/ which I found very interesting and helped me to get lots of info about the process. There should me more like this on the internet, but at this time this is the one that came to mind.

I find very strange that you haven't found a solution between the audiologists and the surgeon.  BAHA, Bonebridge and CI are different solutions for different problems AFAIK.

You are welcome to ask me anything I can help you with.

 

[Mary Beth]

@Mark

 

Hello and welcome.

 

I had progressive hearing loss in my right ear beginning at age 13.  At age 27, I had a surgery in that ear to address Menieres and it also ended all hearing in that ear, as expected.  That ear remained “dead” for 24 years.  Then I received a CI in that side.  The prognosis was guarded and I was advised not to expect open set speech understanding in that ear with a CI.  I was activated and heard only static and beeps.  I began working on aural rehab activities immediately.  It paid off.  That long standing “dead” ear can listen to audiobooks, talk on the phone, enjoy music, etc.  I was fortunate.  I hope you are too.

[Mark]

Thank you Mary Beth. Its the first time I have heard that story and it will help to have your information.

[Mark]

Hi Stranger

Thank you so much for posting about this. I am with the audiologists at SACIC, after referral from my ENT specialist. They have been excellent and informed me very well. The problem has been that they only have one previous client case similar to mine, and as of this date I have not heard from the CI recipient (they asked him to contact me more than a month ago). Its great that within 24 hours I have heard from you and Mary Beth.

It seems like your case may have some similarities to mine, although my (single-sided) hearing loss was over a period of about 6 months in my mid 40's - I am now in my mid 60's.

Would be interested to know who your team has been, especially since we are both in Adelaide.  Certainly I am also interested to 'hear' of your progression with the CI. I wish you success!

I am aware that a Bonebridge would not give me directional hearing and is a totally different system to CI. The question was more related to whether it might provide a better result than a normal BAHA.

Thanks for the link to the blog - what a journey!

Edited May 10, 2018 by Mark
Removed email address

[Daniel the Stranger]

Hi @Mark,

My team is All Ears Audiology in Dulwich but I think they also have offices in Victor Harbour and another place I don't remember where. I also went to SACIC first and they were also good. I changed to All Ears because SACIC doesn't work with AB, only with Cochlear and Medel but they were pushing me to go to Cochlear which was my last choice of the three.

I went almost all the way with SACIC, (had a pre-approved date for surgery) so I can tell you about both of them. I don't have any complains about SACIC, in fact I was happy with the service they did provide. All Ears were more thoroughly in my opinion, they made me go to the psychologist before proceeding with the surgery otherwise they wouldn't go ahead. It was difficult for me because I didn't want to go to the psychologist but at the end I had to. They also gave me copies of all the tests they made when we started the process. 

You can ask SACIC to contact All Ears if they have or know of a patient with a similar case than yours. All Ears told me that they are in contact with SACIC in regards to patients. So it wouldn't hurt to ask them, or better yet, you can make an appointment with All Ears yourself and find out.

The surgeon that performed the surgery was Dr Charad Shawla, I'm very happy with him so far, he was very happy for how the surgery went and also with my recovery.

I suggest you to remove your email from your post, otherwise you will get spammed. 

Please let me know if you need anything else, I would be happy to help.

[Megan L.]

Hi @Mark

Welcome to the group!

I was implanted about a year and a half ago on my left side. I have had a severe/profound hearing loss since I was a little girl. My left ear had not understood words for about 21 years, so I checked my expectations. My discrimination was 0%. I’m very happy to report my left ear is my great ear now! It’s no longer 0% and is considered in the “normal” range of hearing. I was very dedicated with my aural rehab to get that ear to bounce back. My tinnitus is much better as well especially when I’m not wearing the external processor. The ringing has stopped for the most part. Everything sounds crystal clear and music sounds the best it ever has!

Good luck to you and keep us updated on your journey ? 

[Kara of Canada]

Welcome I think everyone has said it all already. I am a bilateral Ci recipient and abosolutely love it so far! It is the best thing I ever did and I have no regrets. Yes the road was difficult and hard to obtain but I worked hard and here I am! So keep us updated and best if luck on your journey. 

[Mark]

Thanks Megan and Kara. Its really encouraging.

May I ask which CI brand you both used?

[Mary Beth]

@Mark

 

This forum is hosted by Med-El so over 90% of us are Med-El users.  There are a few CI users of other brands here.

[Kara of Canada]

@Mark I have bilateral MED EL CIs. With Sonnet processors. 

[Megan L.]

Hi @Mark - I have a Med El CI and a Sonnet & Rondo processor 

Are you thinking of getting a Med El CI?

[MED-EL Moderator]

Hi @Mark - welcome to HearPeers! Would you like us to put you in touch with some Single-Sided Deafness recipients in Australia? I'm sure they'd be happy to share their thoughts and experiences with you! If so, just send us a message with your email address and we can put you in touch directly. 

Kind regards, 

Mary

[Mark]

Hi Mary

Yes I would definitely be interested in this and thank you for contacting me. Please see file attached.

Mark.pdf

[Gemma]

Hi Mark

Herre’s a link to my experience https://blog.medel.com/a-hearing-therapist-chose-med-el-for-single-sided-deafness-ssd/

i hope you find it helpful. Happy to answer any questions you may have 

[Mary Beth]

@Gemma

 

It’s great to see you here!  I hope you are well.

[Mark]

Hi Gemma

Thank you so much for directing me to your blog. I can relate to a lot of the things you are saying. Although I can 'get by' in most group situations by positioning myself, there are others where this is impossible. I'm sure you would know the scenario, particularly when someone joins the group on the wrong side. But sitting at a dinner table with a group is another matter. I normally put my wife on my deaf side because whatever she has to say can wait till later!

As this only affects me in social groups, I have been willing to accept the disadvantage until now. But stories like yours are definitely pointing me toward a CI.

You have commented in your blog that coping in noise is better but not perfect. I don't spend a lot of time in pubs, but this is the worst situation for me, as I'm sure it is for most people with SSD and many other hearing conditions. The noisy restaurant situation is more often the case - I would be interested to hear if you have found that you can easily hear the person on your 'deaf' side under those circumstances. That in itself would be a huge incentive to try a CI.

The rehab part of your blog is very informative, thanks for that too. It is important to know what may lie ahead.

It may be relevant too that I have trialled a BAHA. It gave me good results in quiet situations but gave virtually no help in very noisy circumstances.

Thanks again for making contact. Obviously SSD cases do not form a huge percentage of CI recipients so it is very useful to 'hear' what you have to say.

[Kara of Canada]

@Mark I thought to add something here. I am a bilateral CI recipient. I had the worst time in restaurants before hand too. I stopped going to the movies also. But restaurants are amazing with a CI. You have so much control of your hearing situation with it and can change the volume and sensitivity with it. So. I could actually hear better than my hearing family members! Hope this helps! Best if luck in chossing anf in your new journey! We’re always here to listen and talk to so keep us in the loop! 

[Mary Featherston]

@Kara of Canada - how do you control what you hear?  I'm not nearly far enough along yet, but I am so hoping that I can have actual conversations in restaurants again.  Before my job changed a couple of years ago I used to have to go on business dinners a lot and it was always very uncomfortable for me, sitting there unable to hear.  There were a few people from my company and even from other companies that I knew well who would take the time to talk to me but I always felt like it impeded the flow of the discussion.

This would be a big thing.

[Kara of Canada]

So @Mary Featherston it’s about the volume and sensitivity. I turn the sensitivity way down so I only here what’s in my immediate circle and it works great. Adjust volume accordingly. Of course it may be awhile before this actually works for you. 

[Mary Featherston]

Thanks, that makes sense.  Once I can hear clearly I'll start playing with the Fine Tuner more.

[Little_chooky]

Hi @Mark

I hope you are well and making progress to where you want to get to with your hearing  

Was interested to read this thread as I have also recently become SSD in my left ear and am an Aussie too. Can I ask you what you thought of the BAHA and why it didn't work for you? My ENT has said that CROS and BAHA would be my options and that CI is the last resort. For me the idea of such invasive surgery for the CI does sound rather alarming and if the BAHA could help then I would consider it. Would be keen to have your perspective.

Cheers

Caroline

 

[Mary Beth]

@Little_chooky

Have you been able to test Med-El’s ADHEAR yet?  It is a non-surgical way of gaining access to sound from your deaf side via bone conduction.  My friend here is receiving hers soon.  She was able to test it out with her audiologist.  Just a thought while you are exploring all options.

[Daniel the Stranger]

@Little_chooky, maybe I will need to be corrected, but as far as I know CI is not a last resort option. All depends of the type of hearing loss you have. If a doctor says that BAHA (ADHEAR for Medel) is for you, it would mean that you don't have nerve damage, therefore you wouldn't need a CI. But if there is nerve damage, CI is a must. I'm not sure if it is the ENT or Audiologist work to find out the type of hearing loss you have.

[Mary Beth]

It can be complicated with single sided deafness.  There are so many different approaches.  

Basically in single sided deafness you have sensorineural hearing loss on the deaf side and a completely typical hearing ear on the other side.

There are surgical and non-surgical approaches.

There are conductive approaches that send the sound to the one functioning inner ear. (technically it does send sound to both inner ears but only the working inner ear perceives the sound)

There is the option for a cochlear implant which delivers sound to the deaf ear and thereby creates binaural hearing.

I believe we have two members in HearPeers with single sided deafness and cochlear implants.  @Gemma and @VeroNika.

Am I missing anyone else here with single sided deafness and a cochlear implant?