Sensorineural Hearing Loss Due to Premature Birth

A

Anonymous2929

Guest
Author
#1
Hello,

I have sensorineural hearing loss in my left ear and profound hearing loss in my right. I cannot hear at all from right side and use an aid in the left. Without the aid, I am profound in both ears.

There is no valid reason for my hearing loss. I was born premature (4 weeks early). I was placed in a big glass bottle for 4 weeks as I had a weak heart. My parents were told I would have development problems in the future.

From the age of 6, my hearing started to deteriorate in my right ear along with my speech. I couldn't pronounce words correctly and I was fitted with a hearing aid in my right ear. I also took speech therapy which has greatly helped.

From the age of 13, suddenly both ears started to deteriorate and I started to wear aids in both ears. Despite the aids, speech understanding and perception were very difficult. I struggled in school due to bullying, discrimination and my educational progress was hindered as I did not receive support from teachers or from the disability office from the school (like a note-taker or helper). Despite a hard and difficult childhood and teenage years, I am proud to say I graduated from university in 2013 with a BA Hons at the age of 24 (I am 26 now). I had a note-taker whilst at university and with her encouraged I obtained my degree. I also took up amateur boxing from the ages of 15-20. It was a way of taking my frustration out thinking I had little opportunities in life. I was a good amateur boxer and won numerous bouts. I intended to turn professional but was told my deafness would not allow me to pass the medical. Currently, I working in a supermarket the past 8 years. I have had about 30 interviews for jobs relating to my degree but have been unsuccessful. I suspect my hearing loss is putting employers off. All my dreams have been shattered by my hearing loss. And I have a feeling I will be stuck in this supermarket job for many years.

April 2013, suddenly my right ear which I used a hearing aid went dead. I had a hearing test and was told all nerves are damaged and nothing will help apart from a cochlear implant. I was implanted with a cochlear implant in my right ear on November 2013. From numerous programming's, I am getting no benefit from the implant. At the moment, I am using a aid in my left ear. I am planning to remove the implant in the near future.

I have tinnitus in my right ear. It is always there, loud and clear. I would rate it 8 on a scale of 10. Some of you might be surprised but my tinnitus has never bothered me. I do not lose concentration, I have no balance problems and can sleep peacefully at night. Right now I am sitting in the hall on the sofa typing this. The tv is on and my little brother is watching Monsters and I have my tinnitus on full blast! There has been some speculation that having a CI reduces or stops tinnitus. It does not. (for me it has not).

From reading a lot of threads on this forum, there is a lot of talk of a cure for tinnitus but not much for hearing loss. I don't really care about my tinnitus. But I would love to have my hearing back (profound in right ear and severe in left ear). Sometimes I close my eyes and can see my life flashing through. 10 years I thought "maybe there will be a cure for hearing loss". 10 years down the line, there still isn't. I rather have my hearing now and follow my dreams (I always wanted to attend drama school and try my luck in acting or start boxing again). Instead of having hearing when I would be in in my 50's. Sometimes I feel there is no hope.
 
#2
Hello Anonymous2929,

I read your introduction post with great admiration. You have a remarkable and fighting spirit and I hope and pray that all your dreams are fulfilled. Sometimes, we lose things but we get 'compensated' in other ways...

Keep your faith strong, you need not enter a boxing ring, you are a natural fighter and a winner.

Blessings
 
#3
Forget to add some important events. I had glue ear (my right ear) when I was 14. (A bit odd aint it? For a teenager to have glue-ear). All I can remember is that waking up in pain and this thick liquid pouring out of my ear. In the morning it used to dry and enslave it self. My mother had to clean the ear. Had surgery to place grommet.

A very strange incident occurred when I was 14 again. Nice, sunny afternoon in school. And it was my favourite lesson; ICT. The teacher was talking to me, face-to-face. Suddenly, just like when you turn the light switch on and off, I couldn't hear nothing in both ears. Scary aint it? All I heard was waves crashing in my head. I told the teacher "I cant hear ya!" I must have screamed this at him a few times. He laughed and I thought he was mimicking me "I cant hear you" and laughed. About 5 minutes later, sound returned. This was one of many incidents related to my hearing loss.
 
#4
Silent Night said:
Hello Anonymous2929,

I read your introduction post with great admiration. You have a remarkable and fighting spirit and I hope and pray that all your dreams are fulfilled. Sometimes, we lose things but we get 'compensated' in other ways...

Keep your faith strong, you need not enter a boxing ring, you are a natural fighter and a winner.

Blessings
Click to expand...

Hello, thank you. Sometimes it is very difficult explaining my hearing loss. People look at me and assume I am normal. I wish I was "normal". I find despite telling others I am deaf and asking them to speak clearly or face me so I can lip read them; they don't make a effort to accommodate my needs. After all, life would be much easier for them knowing I have heard their instructions and doing the right thing! (At work lol)
 
#6
Hi @Anonymous2929 - reading your introduction, it is difficult to find words, really. The amount of injustice some people have to deal with is, well... hard to comprehend. I can see how your hearing loss (when profound) could be a problem in the workplace and hence put employers off. I do think, however, that you eventually will find someone, somewhere who will be able to appreciate whatever skills you have (BA Hons). Once you get a foot in the door, finding a(nother) job in the future will be (much) easier with something on your CV. You may also consider switching "careers" by literally doing something different career wise, or perhaps become independent - there are many ways to start a business these days (with the Internet around). I can only imagine that you will succeed eventually, but I do recognize that going for job-interview after job-interview can be tiresome (and possibly even erode a person's confidence after a while). The other thing to remember in today's world is networking: be active with the various professional platforms (e.g. linkedin) and nurture and "honour" relationships that may develop. Sometimes these initial and fragile relationships turn into something more concrete further down the road - that's just about where all my career moves have come from! So you never know what may happen...

Anonymous2929 said:
April 2013, suddenly my right ear which I used a hearing aid went dead. I had a hearing test and was told all nerves are damaged and nothing will help apart from a cochlear implant. I was implanted with a cochlear implant in my right ear on November 2013.
Click to expand...
Just for my own understanding, did your tinnitus get worse since the cochlear implants? I noticed you put tinnitus since 1995, and so obviously you had it before your recent intervention. Also if you developed tinnitus at about the age of 6, do you actually recall that happening, explicitly?

Although not specifically relevant, I was in contact with Mr. Rob Gerk (the first person in the world to undergo gene therapy for hearing loss). He also has had hearing loss since childhood (and tinnitus), but for him the main issue is the hearing loss. The trial (CGF-166) is currently on-going and I believe there are now at least three candidates who have gone through the procedure (which I believe is not blinded i.e. no placebo used). There is a thread about it here on the forum. Perhaps there will be actual treatments at some point in the not too distant future.

Thanks for sharing your story.
 
#7
Welcome to TT Anonymous2929. Considering the possibilities of a future cure for hearing loss, this might be of interest:



It may be a bit early to give up hope.

/V
 
#9
attheedgeofscience said:
Hi @Anonymous2929 - reading your introduction, it is difficult to find words, really. The amount of injustice some people have to deal with is, well... hard to comprehend. I can see how your hearing loss (when profound) could be a problem in the workplace and hence put employers off. I do think, however, that you eventually will find someone, somewhere who will be able to appreciate whatever skills you have (BA Hons). Once you get a foot in the door, finding a(nother) job in the future will be (much) easier with something on your CV. You may also consider switching "careers" by literally doing something different career wise, or perhaps become independent - there are many ways to start a business these days (with the Internet around). I can only imagine that you will succeed eventually, but I do recognize that going for job-interview after job-interview can be tiresome (and possibly even erode a person's confidence after a while). The other thing to remember in today's world is networking: be active with the various professional platforms (e.g. linkedin) and nurture and "honour" relationships that may develop. Sometimes these initial and fragile relationships turn into something more concrete further down the road - that's just about where all my career moves have come from! So you never know what may happen...


Just for my own understanding, did your tinnitus get worse since the cochlear implants? I noticed you put tinnitus since 1995, and so obviously you had it before your recent intervention. Also if you developed tinnitus at about the age of 6, do you actually recall that happening, explicitly?

Although not specifically relevant, I was in contact with Mr. Rob Gerk (the first person in the world to undergo gene therapy for hearing loss). He also has had hearing loss since childhood (and tinnitus), but for him the main issue is the hearing loss. The trial (CGF-166) is currently on-going and I believe there are now at least three candidates who have gone through the procedure (which I believe is not blinded i.e. no placebo used). There is a thread about it here on the forum. Perhaps there will be actual treatments at some point in the not too distant future.

Thanks for sharing your story.
Click to expand...

I have a degree in Youth and Community Work. I am a nationally qualified youth worker. I have 2 years voluntary experience working with young people. My degree took 3 years to complete. Every year I had to complete a placement at different organisations. Nearly every interview the outcome has been the same; little experience. My old mentor is a senior youth worker in the city council and he told me it is my hearing and communication problems. Funny thing is his daughter has bi-literal CI's (she was born profound). I cannot use the telephone for voice conversations unless its with family or friends. They know how to speak to me.

I find my tinnitus gets worse with using the implant. I had a hospital appointment this Monday gone by for programming. I used the implant all day. In the evening I took it off and had fairly loud ringing (but still slept like a dog!). I haven't used the implant this week since Monday evening and have been using my hearing aid. Funny thing is without the implant switched on, I am profound deaf. And still have ringing in my profound ear! Nothing is being stimulated. Since I can remember I always had tinnitus. And I have learned to live with it.

I have been in contact with them and they said I am not eligible for the trial. Due to my CI. I rushed into the implant route in late 2013, I was really worried and panicked at that time. I should have waited. I was activated in January 2014 and a year down the line they doing gene therapy! My experience with my CI has totally been negative
 
#10
Vincent R said:
Welcome to TT Anonymous2929. Considering the possibilities of a future cure for hearing loss, this might be of interest:



It may be a bit early to give up hope.

/V
Click to expand...


I know about this Chloe but was little vary. If it was such a success, why didn't this news make big headlines. Everyday I search for 'hearing loss cure gene or stem cells'. It is many years away and they will carry on testing rats :(
 
#11
Anonymous2929 said:
I know about this Chloe but was little vary. If it was such a success, why didn't this news make big headlines.
Click to expand...
I know what you mean. The reason the therapy was so successful (in her specific case) was because the hearing loss was related to an autoimmune disorder. I would also not spend money on stem cell treatments (Mesenchymal type) without having a good guarantee for a successful outcome - and indeed the etiology has lot to do with the success factor. But the current stem cell treatments with adult stem cells are not really geared towards more general hearing loss, unfortunately - but at the same time, there is also a lot of clinical investigations to look into (i.e. just how effective are adult stem cells with today's technology).

There is, however, one study which has enrolled participants (children) using current stem cell technology, but I can imagine you already know about it:

https://clinicaltrials.gov/ct2/show/NCT02038972
 
#12
attheedgeofscience said:
I know what you mean. The reason the therapy was so successful (in her specific case) was because the hearing loss was related to an autoimmune disorder. I would also not spend money on stem cell treatments (Mesenchymal type) without having a good guarantee for a successful outcome - and indeed the etiology has lot to do with the success factor. But the current stem cell treatments with adult stem cells are not really geared towards more general hearing loss, unfortunately - but at the same time, there is also a lot of clinical investigations to look into (i.e. just how effective are adult stem cells with today's technology).

There is, however, one study which has enrolled participants (children) using current stem cell technology, but I can imagine you already know about it:

https://clinicaltrials.gov/ct2/show/NCT02038972
Click to expand...

Yep, already know the trial in USA involving children. I believe I been told there are at least 50-100 different ways to lose hearing. Sometimes it is really frustrating to read (once again!) in the news 'gene therapy' cure mice! I been reading about mice since early 2000. Here in England, the government spends just 2% in hearing loss research!
 
#13
@attheedgeofscience

Sorry to steal thread, wont let me pm you, quick question since I know you have tried many alternative treatments.

What would you recommend for someone trying to regain about 15db in only one frequency? I recently discovered a have a sensinueral dip at 500hz only that I was not born with all my other frequencies are 10db or less but my 500hz is at 40db, need to be at 30-25db.
 
#14
Anonymous2929 said:
I know about this Chloe but was little vary. If it was such a success, why didn't this news make big headlines. Everyday I search for 'hearing loss cure gene or stem cells'. It is many years away and they will carry on testing rats :(
Click to expand...

It seems like you're ahead of me when it comes to keeping tabs on things, Anonymous2929 :) I can only agree it's frustrating with scientists curing lab rats (successfully, if we are to believe the headlines) instead of curing us. I just like to believe that there's some sharp brains who are actually on the job, so to speak, and steam cell stuff getting tried out on real life humans seem to hint in that direction.

From a short time perspective, I can understand it's hard to get a career going with hearing problems. I've been over in UK myself, and I recall it as a very competitive society. I imagine it must be hard to find a path where your lack of hearing doesn't get in a way, that goes along with your interests. It's so very true what you write on your profile: life is always a struggle.
 
#15
Vincent R said:
It seems like you're ahead of me when it comes to keeping tabs on things, Anonymous2929 :) I can only agree it's frustrating with scientists curing lab rats (successfully, if we are to believe the headlines) instead of curing us. I just like to believe that there's some sharp brains who are actually on the job, so to speak, and steam cell stuff getting tried out on real life humans seem to hint in that direction.

From a short time perspective, I can understand it's hard to get a career going with hearing problems. I've been over in UK myself, and I recall it as a very competitive society. I imagine it must be hard to find a path where your lack of hearing doesn't get in a way, that goes along with your interests. It's so very true what you write on your profile: life is always a struggle.
Click to expand...

Totally true Vincent. I really hate when people harp about how disabled people should be given equal rights, then I say where are MY equal rights. At work, there is a women who has dwarfism (short stature). When colleagues or customers interacted with her, I can see warmness towards her. It is a totally different story for me. Just recently, I found out through a colleague that most people at work and a few managers have been bad mouthing me. I just ignored it. Its nothing new to me. When your called a deaf bastar* at the age of 7 in the playground by other children; you can take on the world.
 
#16
mrgrey said:
What would you recommend for someone trying to regain about 15db in only one frequency? I recently discovered a have a sensinueral dip at 500hz only that I was not born with all my other frequencies are 10db or less but my 500hz is at 40db, need to be at 30-25db.
Click to expand...
I did cold laser therapy, and saw good improvements (up to 25db). I have posted audiograms that tracked my progress in my own introduction as well as audiograms from another non-affiliated clinic which were stamped with clinic signature (in order to prove the validity of the results - which a number of members have doubted).

You can find some of the more relevant threads here...

www.tinnitustalk.com/threads/my-introduction.1862
www.tinnitustalk.com/threads/my-introduction.1862/#post-39035
www.tinnitustalk.com/threads/my-introduction.1862/page-3#post-60534

...or follow the links via the information tab on my profile page.

As for your hearing loss, yes, I can understand why a "dip" in the lower part of the frequency spectrum might cause a bit of nuisance. While the speech frequency range is normally defined by the "speech banana" (0 to 8 kHz), it is the lower part of the speech frequency range which is most important (about 100 Hz to 4 kHz) for everyday speech clarity.
 
#17
Hello Anonymous2929, I was wondering about CI since i was on verge of getting it, my ENT directed me to. But reading stories about tinnitus get worst had made me feel like i shouldn't. I am deaf on right ear, profound in left and use a hearing aid in left. I was born like this as well. Well 4 months ago march i was using a buzzer to trim my beard and I heard ringing for 5 min in shower then it went away until the next day, I was trimming some more then played on my laptop which made alot whirring noise with the fan. This is when I got tinnitus constantly since. I started with Eeeeeeee sound then a month later it became constant Wurrrrrr dingdingdingding Wurrrrr dinginginging etc.. Sometimes it became like blowing on a mircophone, it changes alot. Get worse at night when it quiet. Should i avoid CI and keep using hearing aid? CI doesnt help at all does it?
 
#18
Robb09 said:
Hello Anonymous2929, I was wondering about CI since i was on verge of getting it, my ENT directed me to. But reading stories about tinnitus get worst had made me feel like i shouldn't. I am deaf on right ear, profound in left and use a hearing aid in left. I was born like this as well. Well 4 months ago march i was using a buzzer to trim my beard and I heard ringing for 5 min in shower then it went away until the next day, I was trimming some more then played on my laptop which made alot whirring noise with the fan. This is when I got tinnitus constantly since. I started with Eeeeeeee sound then a month later it became constant Wurrrrrr dingdingdingding Wurrrrr dinginginging etc.. Sometimes it became like blowing on a mircophone, it changes alot. Get worse at night when it quiet. Should i avoid CI and keep using hearing aid? CI doesnt help at all does it?
Click to expand...

Robo! I apologise for my late reply! I did not receive any notification of your post.

Hmmm your hearing loss is similar to mine. Problem is when your born in a hearing world and lose your hearing slowly. It is very hard to adjust to a CI. Problem will be; if you use the CI with your hearing aid, your brain will automatically block the hearing aid and will only pick the sounds from the CI. This is because the CI is a thousand powerful than our hearing aids.

I was told by my audi nearly 1.5 years of struggling with my ci, that a ci only helps for better lip reading. I was doing this with my hearing aid! I was shocked that I was not told of this before I was implanted as then I would have said no to the implant right away.

For young people and babies who are born profound, the CI is a great a tool to live in the sound world. As the ci would be only source for their hearing. I hate the robots voices, the artificial sounds it makes, it hurts my head as a ci will pick up literally every sound it can! Eg walking in the street; you will cars go past, children shouting, the wind and it is amplified a thousand times more than natural hearing. And these sounds are hated by me.
 
#19
Anonymous2929 said:
Robo! I apologise for my late reply! I did not receive any notification of your post.

Hmmm your hearing loss is similar to mine. Problem is when your born in a hearing world and lose your hearing slowly. It is very hard to adjust to a CI. Problem will be; if you use the CI with your hearing aid, your brain will automatically block the hearing aid and will only pick the sounds from the CI. This is because the CI is a thousand powerful than our hearing aids.

I was told by my audi nearly 1.5 years of struggling with my ci, that a ci only helps for better lip reading. I was doing this with my hearing aid! I was shocked that I was not told of this before I was implanted as then I would have said no to the implant right away.

For young people and babies who are born profound, the CI is a great a tool to live in the sound world. As the ci would be only source for their hearing. I hate the robots voices, the artificial sounds it makes, it hurts my head as a ci will pick up literally every sound it can! Eg walking in the street; you will cars go past, children shouting, the wind and it is amplified a thousand times more than natural hearing. And these sounds are hated by me.
Click to expand...
Hey man , did you look up the thread about the low laser therapy ? There is some evidence it has brought a lot of hearing back to many people
 
#20
uae96 said:
Hey man , did you look up the thread about the low laser therapy ? There is some evidence it has brought a lot of hearing back to many people
Click to expand...

I doubt it low laser therapy will restore hearing? I can't see how these ray will reach the inner ear where the cochlea is located? That is where the damaged nerves are located...
 
#22
Hi again, have you noticed any changes in T before/after you got CI? Has it helped or did it increased?
 
#23
#24
dan said:
I would not do boxing with a weak auditory system. Boxers have to be 100% healthy.
Click to expand...

Hi Dan. I started boxing when I was 13 and by the age of 18 had sparred thousand of rounds, had numerous bouts and trained everyday. Only sparring and in competitive bouts I was without my hearing aid. I still did not have a problem the way I boxed with the hearing aid on or without it. There have been deaf boxers in the USA and in the UK.
 
#25
Robb09 said:
Hi again, have you noticed any changes in T before/after you got CI? Has it helped or did it increased?
Click to expand...

My T increases when I use the CI. When I do not use the CI, the T goes down. When using my CI, the T is always there. I believe T is caused by exposing your self to loud noises. I have not worn my CI for 3 months and my T is like the way I have described in my introduction post. Like I said, I do not care about my T but I want my hearing back. Having hearing loss is much worse than having T. I see most people in this forum are T sufferers but not hearing loss sufferers.
 

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