24 years SSD

[Campnorthstar72]

Hello All,

This summer I’ll be getting a CI for my SSD...after 24 years! I’m both excited and scared. Have I been deaf in that ear too long? The research is mixed. Some places won’t do it if the unaided deafness was greater than 10 years. Will I be able to understand speech in that ear? 

[Mary Beth]

@Campnorthstar72

The Research sure does paint a poor picture BUT my right side was completely deaf following a surgery to treat Ménière’s disease for 24 years!  It started understanding speech a few hours after activation.  It required dedicated aural rehab daily but it became an awesome hearing ear !  I hope you are as fortunate. 
 

Check out our topics in REHAB.

[Campnorthstar72]

Mary Beth,

Thank you so much for your kind words and encouragement. Fingers Crossed.

I work in education and have several months off following my implantation...so I plan to double down on the rehab. 🙂

[Mary Beth]

Great plan!  Keep us posted!

@Campnorthstar72

[JosephG]

Just to add my 2 cents, I've been single-sided deaf (left ear) for as long as I can remember, so easily +35yrs (I may have been able to hear in that ear when I was younger, but I'm not entirely certain and the problem was first diagnosed in early elementary school). I recently had CI surgery in August 2019 and was activated Sept 1st, so I've now been using a CI in my left ear for about 6 months. In the beginning things were very difficult to understand. I heard "sound", but conversation was largely like 'morse code' to me and I couldn't much distinguish a constant noise like running water from an array of other sounds. But ... things have gradually improved... 

I can now hold my own using only my left (CI) ear in conversation and particularly anywhere that I have even modest visual cues (lips, facial expressions, context of some sort). The phone is still quite difficult in that ear and I wouldn't attempt to take a phone call in that ear by itself, but I do try to listen to podcasts and the like exclusively in that ear and things are getting better. I've been streaming Audible books (with the accompanying text) to my CI and I can hear the reader/speakers very clearly and find my place even if I lose the text by just listening to the words. And in general voices (of all kinds) no longer sound robotic or mechanical, I clearly hear language, accents, stylistic differences etc (sometimes I even learn how a word is pronounced by listening to it in that ear .. yeah, crazy, right?).

So while it's not perfect by a long shot and I still need a lot of work on that ear, I see vast potential on the cusp. So to try to keep a long story short, in my opinion everyone has a slightly different experience with these devices, but I'd like to believe that if I can make the progress that I've made in my left ear after such an extensive period of dormancy (perhaps since birth?), that anyone with any degree of hearing loss over any period of time can benefit tremendously with the proper mindset and effort applied. It will take work, don't get me wrong, and it's very likely you will not understand a thing in the beginning (personally I'm still uncertain if it will ever be anywhere as good as my right "good" ear in terms of comprehension), but the fact that I now sometimes prefer that side in conversation is frankly amazing to me. So best of luck @Campnorthstar72!         

[Mary Beth]

@JosephG

Awesome!

 

Which processor are you using?

This journey really shows us the power of our brain’s neuroplasticity!  

[Vasilii]

Hello guys, 

I'm SSD on my left ear since birth and I've never tried HA because my right ear hears pretty well. But anyway have some difficulties in a conversation, I often don't hear what people say, when normally others do. Now I'm hesitating to get a CI for me. I've got an interview today and doctor frightened me that almost everybody who has implanted this device, having a 'sleeping nerve' for a long time, usually don't get any reasonable recovery on a treated ear. They can even hardly distinguish some basic sounds. I'm so excited with your experience, but I was also looking for an official statistics and I couldn't find it anywhere. I also think that it might depend on the apparatus itself. What kind of device do you have? 

Best wishes, 

Vasilii

[Dan W]

@Vasilii I was ssd for 8+ and got a synchrony2 implant and use a sonnet2 and rondo2. I "feel" that having one good ish ear is a huge advantage in the rehab process... I went through the clicks and whistles, robotic sounds and now am starting to adjust. At times it is very natural, others it seems a little off. At this point if I go out of my way to isolate the good ish ear and depend solely on the implant there is clearly a degraded quality, but put them together and I am way better off. For me the implant was a great choice.

To say it another way... To me, hearing is additive in nature so anything I get out of the implanted side enhances my awareness and understanding. 

When I looked, the available studies are difficult for me to place myself within the data as the field of contributing possibilities is too great... A lot of things could impact implant "success"... the reasons people have hearing loss, time of that loss to the time they are implanted, the type of implantation, tech of the implant (The tech is only a few decades old and rapidly changing) , how far in the cochlea the device is inserted, number of implanted device contacts, speed of the processors, stimulation strategies, patient persistence with using the device, residual hearing in other ear or a bilateral implant, age when hearing loss occurred (were they lingual appeared to be an important milestone), the quality and ability of surgeon and audiologist, health history…. They went on and on. Most of the studies were only including 7 to 20 participants with ranging medical histories. The published ones were in my opinion old, 2002 to 2010. Surgical techniques and devices have significantly changed in 15 years.  I found that there are things that are commonly indicated by (trustworthy to me) sources as being characteristic of "successful" patients: realistic expectations and persistence in using the device. Surprisingly enough I did find indication that age of the patient may have little impact on "success."  If you do find a study that you feel you fit within the data pool and well defines success then share it with me as I'm still interested in knowing if I'm an outlier or in the middle of the bell curve. 

I was for some reason not hesitant at all. It was a running leap from the high dive platform... I was however nervous and overwhelmed at times. My personal thought process was...

• Is my bad ear 100% full frequency range non functional? Could there still be some nerve activity???
• Is the reason I am deaf in one ear a good candidate for successful implanting? 
• What happens if I get very little or nothing out of the implant process? (My answer was I'll just wear fridge magnets as a party trick...)
• Is there a high risk to me having the implant done?
• Is the implant process likely to be an undue burden to me or my loved ones? Do I have their support?
• Am I willing to persist with using the device as they indicate it will be months or longer for the full benefits to be realized?

You could make your own list, let it sit for a while and answer them as honestly as you can. Then ask your Dr. opinion on the relevant questions... 

I was told the same things... I believe my Dr. wanted me to make informed decisions with as much clinical information as they could provide, not just to freak me out. It was easy to become overwhelmed with information. Looking back at the process so far, I agree with everyone else... Your results will be unique to you, and you have to be your own advocate when making medical decisions.  Continue your own research until you are satisfied you beat it with a stick.

Dan 

[LJI]

I’m 60 years old and have had SSD since having the mumps at 2 years of age.  Just coming from a CI evaluation where the doctor was not very optimistic on results I would achieve with CI based on length of time having SSD.  I have normal hearing in my right ear.  Interested in comments and others experiences.  

[Mary Beth]

@LJI

Welcome to HearPeers!

I have hearing loss on both sides but my right side stopped processing all sounds 24 years before it was implanted.  It had heard before that.  The CI team was not optimistic about how my right ear would respond after 24 years of no auditory input.  They cautioned me to be realistic about my expectations based on scientific studies.

 

I almost did not implant it.

 

However I decided I didn’t have anything to lose as long as I was willing to accept the risks of surgery and it was implanted.

 

At activation it only heard static and beeps... no speech.  I was excited that it heard anything at all.  Smile.

 

Aural rehab helped a lot!  It is an amazing CI ear.  Phone calls, music, audiobooks, etc.

 

I hope you are as fortunate.

[Justin]

I was implanted 3 years ago after 35 years SSD. My surgeon made no promises that I'd hear with it or that it'd help, but here's how it's gone for me:

#1 Most important thing: I can hear SO MUCH BETTER in noisy situations, and no longer avoid loud social events - I wish they were quieter, but I don't have to flee the acoustic assault, and I can manage conversations better. It's no longer 100% crucial where I position myself, I can hear OK to both sides. I can drive a car and hear my passenger, or sit at the "wrong" corner of a dining table. I can still participate in conversations even when it's more than 1-on-1. I say "could you repeat that?" about 10% as much as before. I'm not exhausted and cranky at the end of the day from listening fatigue. I can express myself with more confidence without worrying I heard something wrong or someone already said what I'm about to say. I would say that these are life changing benefits. As SSD, we adapt and press on, but we sometimes forget what we're giving up and missing out on. The CI restores a lot of that.

Speech understanding with just the CI is so-so, I can perfectly understand studio quality speech from most types of voices. Falls off fast when there are background sounds, music, or reverberation - I'm getting better at this though. Music sounds better with both ears (acoustic & CI) than just my acoustic ear. Directionality is so-so, slightly better than mono.

Back to #1: my CI helps me operate in the real world SO MUCH BETTER! Performance with just the CI is not the point! The signal from your implanted ear helps your auditory system make better sense of sound to your good ear. 

I would do it again in a heartbeat. No long term downsides, in my experience. Pre-surgery is stressful (self-inflicted anxiety). Surgery is... surgery - it takes a little time to recover. Rehabilitation is very tedious at first, eventually I learned to be patient yet persistent, and improvement is still happening 3 years on. Actually having an implant is a non-issue. Wearing the processor is less hassle than wearing eyeglasses. I wear hats and helmets with no problem. Run, bike, ski, play basketball with my processor. It's on my head every moment I'm not sleeping or showering.

If you are SSD, it is worth fighting for insurance coverage and jumping through all the hoops to get a CI! Other SSD solutions don't give you hearing in two ears, CI is the way to go.

But that's just my opinion! Hope this helps!

[Mary Beth]

@Justin

Your SSD CI journey sounds amazing. I am very happy for you.

Which processor for you use?

Any recommendations for bike helmets?

[Justin]

I have a Sonnet and a Sonnet 2. Since ASM 3.0 is not available in the US yet, they are pretty much the same!

Just got that AudioStream! I need to share my thoughts on it -  positive!

Helmets: I have helmets by Smith (Forefront and Route) and by Giro. The Smith ones fit me better. It’ll vary by where your coil sits. My coil is in the typical place 45 degrees up and back from my ear - no one should get implanted low! You want the coil under your hat or helmet, not below it! i Many helmets have a gap there for airflow. I had to fold back a pad in the Giro helmet. I think I like helmets with MIPS system and ratcheting tighteners at the back. MIPS is like a helmet within a helmet on suspension cords. Once you get it on, the outer hemet can get jostled, but the inner part stays put. The ratcheting retention system is quickly loosened and I tip the helmet on to not scrape of my coil. Then I ratchet it down. The band/strap of the ratchet goes right over my coil cable and effectively retains it. MIPS and ratchets are only a bit of an up sell, but well worth it. 
 

An awesome advantage of MedEl is how thin the coils are! I’m pretty sure they are the thinnest. And the processor doesn’t stick far back, it hugs the back of the ear so it doesn’t hit the part of helmets that drop down behind the ear. 

[Mary Beth]

@Justin

 

YesI am also very thankful to Med-El for thin coils and a BTE processor design that sits nicely against the back of our ears.  Thank you @MED-EL Moderator!

I am VERY interested in your AudioStream experience.  Please tell us all about it.

[Justin]

5 hours ago, Mary Beth said:

@Justin

 

I am VERY interested in your AudioStream experience.  Please tell us all about it.

 

Here you go! 

 

[Eric in Tulsa]

I only wish my doctor had the gumption to go to bat for me. He took one look at my chart and after two minutes conversation with me said he would not implant me. He said that I was too old to learn (69 years old) and had been SSD too long (25 years). I see case after case of people in my same situation proving him wrong. 
 

I am living with CROS Hearing Aids, which is better than where I was, but nowhere near where I think I could have eventually been. 
 

my only consolation is Karma is a bitch and she will bite the dear doctor some day when he is 69, God willing that he lives that long.