From Surgery to Activation, What?

[Sid]

Are you having fun yet, Russ!

Your poor brain will be wondering what's going on. Enjoy the new cacophony of sounds!

Sid

[russboltz]

Well, I went in with high hopes and low expectations, and got both. I'm using the Rondo (at least at first), and the programming went well, I think. But what I have now is the ability to hear almost every sound around me, but just as basically a Middle C (the musical note) for the length of the sound. If you've ever heard radio Morse Code, with its "dits" and "dahs", you'll know what I mean better. A few - perhaps 2 or 3 - sounds are already natural; the most interesting is the sound of the turn signal in our car is fully natural, but everything else is a "beep," long or short. I think that will work its way out over days and weeks.   While I have had the ability to understand speech in my right (implanted) ear in the past, it's been a dozen or so years, so that may affect it a lot.

The most interesting thing, however, is that the CI seems to be supporting my left-ear HA, rather than the opposite: While I can't hear "more", I am almost at 100% comprehension when facing someone. Previously, I was around 40% (my guess, but accurate) so this is a huge improvement in conversational abilities.

If I had a suggestion for those who come after me, it would be to come to the activation day with very, very modest expectations, rather than celebratory ones. My audiologist opened the door with huge smiles and "Are you ready for the bid day?" attitude. She's a great lady, but if I didn't have a fair amount of personal moxie, I could have come home deeply disappointed and wondering, "What's wrong with me?" There's nothing wrong; this is not an instant panacea, and since I was prepared for the fact that it's going to be a lot of exercising, I have no problem with it being a first - albeit very huge - step.

And if I had a suggestion for the really nice people here - Adam and Matt and all the rest of you - it would be to also help newbies and those-in-waiting to be realistic, so that those who have "instant wow" moments don't make those who have, with apologies to Peggy Lee, "Is That All There Is?" moments, feel somehow wrong.  This is work, and it's glorious work, but just as with anything worth doing, it can take some time and a lot of effort.

 

rusty

[Adam]

Russ, now comes the work. for me it was similar in that some sounds sounded surprisingly normal pretty quickly but other sounds took a while. One thing that was drilled into me early was practice, persistence and patience. you have a lot of practicing ahead of you and the rest of the family can join in. read out loud with audio books, a little further down the road practice on the phone with prearranged conversations, listen to nursery rhymes that you are familiar with. try to keep it on as long as you can each day.

Once your brain starts to figure things out, sounds will start to sound a little more normal. I cant stress enough to keep a VERY DETAILED log of what things sound like, where you were, what were the acoustics in the room like, as much as you can think of as this will really help the mappings go smoother.

your first experience in a concert hall or very noisy environment might be a little overwhelming so be prepared for that. There are plenty of tidbits of advice, so this should get you started.

Welcome back to stereo

[Adam]

also be prepared for the volume to seem to get lower. As they bring you up gradually. some of the higher pitched sounds will totally grate on your nerves at first but again it does get better. That first day, putting the silverware away just about sent me over the edge.

 

The audie and everybody will tell you not to get frustrated but at times it is probably going to happen. A few times I felt like I had hit a plataeu only to go into a mapping and see that I actually made impoements

[Adam]

One last thing.

 

I felt like most on the forum do/did a good job in preparing folks. It is hard work for sure, your audi and CI team should also make sure that they clue you in as well. As that is part of the eval process to make sure your expectations are not too high. since it is such an individual experience, you don't want to pain a picture of doom and gloom nor give them the false impression that it is like hitting a light switch.

If we have failed you in that area, my apologies.

 

The people at my office actually thought that I would have surgery on Thursday and show up Monday hearing perfectly. I have to educate somebody about it often.

 

Kick your feet up and enjoy the families pampering.

[Sandy]

Russ, as usual Adam has hit the nail on the head. I've been activated for three months and the sounds do get better except cellophane and plastic bags! Frustration too happens my first bout yesterday when someone telephoned and I couldn't understand. But just remember the three Ps! I heard thunder today and jumped in my chair! Every sound is an experience!

[russboltz]

Adam --

 

Thanks for the great - as usual - comments. As I mentioned, I'm up to one sound that I understand, the clicking of the turn signal in my car, which sounds surprisingly normal. After one day, that's perfectly fine for me. I'm not yet distinguishing voices from anything else: My footsteps, which I hear, are a Morse Code beep; typing on the keys of the computer are a series of beeps, of the same tone; my wife's words are beep - same tone - that vary in length. It's all a monotone of that beep, with just rhythms of shorter and longer beeps, all at the same volume. Results are individual, so I'm not bothered by that, and I've always realized that it was going to take a lot of work to make this functional.  But my own personal results aren't of "Mickey and Minnie voices" and not even "R2D2" beeps. It's just a series of one-note beeping as if I was listening to pre-spoken radio days.

 

Now that's cool, since I haven't heard much for years in my right side, but since I have always "had" speech unlike those who never heard, I hadn't fully understood that I'd just hear beeps, and I think it helps people to know that I may not be totally atypical; for some, you'll hear and understand a few words right away and more in a few days, and for others on the spectrum, it's just sounds and more time to get utility. For all I know, I'll wake up tomorrow and I will have total high pitched speech.

 

So the effort needed to get better doesn't surprise me, especially to 50% or 60% in several months, or perhaps better. But in my case, I'm starting from 0% today.

 

rusty

[Adam]

Russ you bring up a good point. for me after activation it was very random. after our activation my audi at first was a dead ringer for alvin the chipmonk then mid sentence morphed into Darth vader. i ha to laugh at that one. My wife sound the most "normal" in that I could kind of tell it was her voice but it was VERY tinny (if that is a word) and big echo. so we leave and go out front to set up my next appointment and there are 2 ladies there talking. I'm standing there looking right at them but all i could get from them was like a white noise or static from the TV. It was in perfect sync with their mouth movements so i knew it was them. both of them nothing but static. I looked at my wiife to ask a question but she still sounded at least human. I had a lot of those random sounds where the tv in one room sounded nothing like one in another.

[russboltz]

Adam:

 

Your post leaves me very concerned I'm doing something wrong, very wrong. It's not "random" for me, and I don't have "voices" that sound tinny or even "Darth Vader." I have ONLY beep/tinny sounds. I can't tell the difference between a door closing, footsteps or a voice. What I "hear" is like this: BEEP. BEEEEEP. BEEP-BEEP-BEEP. And so on. Hitting my keyboard now gives me the same "beeping" as my wife's voice (think of the pattern of how you hit keys and say words being the same) so I can't tell the difference between her talking and me  typing. Am I doing something really really wrong?

 

rusty

[Leblisa]

Rusty,

I'm sure you're not doing anything wrong.  Your experience is just different from Adam's or anyone else's.

Give it time and

[Adam]

Russ, you are not doing anything wrong at all. As Lisa stated each person is different. Their hearing loss is different as well as their hearing journey. Each one of us probably have had very different experiences. My audi told me that she had one person walk out into the hall and talk on thier cell phone just an hour after activation.

every brain is different and is going to respond in different ways. You don't know how you will respond until the day of activation. This is why, talking to people who have already been activated can be a blessing and a curse in a way. Every person has to realize they could start out the gate running or have to take it much slower.

I am bi lateral and both activations were very different and i have the same brain. I have talked to a number of people that had beeps only for a little while.

Try to relax and remember, YOUR ACTUALLY HEARING whether its beeps or not. HOW COOL IS THAT?!?!?! Your brain right now is in the process of trying to figure out a bunch of new information that has been thrown at it all at once. Just keep practicing listen to everything you can and i believe you will start making progress. You JUST got activated. PATIENCE!!!!

remember the person who talked on the phone? For me, the phone was the longest to come back. I did get frustrated and had my little tantrum "THATS NOT FAIR" they talked on the phone way before I did.

Don't get caught up in other peoples results. Celebrate all the small victories that will be coming your way on your new journey.

[russboltz]

Adam -

 

Thanks. I'm generally a "cup is half full" person. My concern wasn't whether I was hearing or not, but whether having everything as a beep/tone was a situation that was abnormal or not, i.e. not "is the cup half full or half empty" but "what is in that cup and is it a big mistake?" So thanks.

 

rusty

[Adam]

Sounds good Russ.

 

It will get better, those beeps will be replaced soon enough.

[Leblisa]

My half-post, above, shows me I'm still more out of it from surgery than I realized...

I'm glad you've shared this Russ, I will not be surprised when all I hear are the beeps and tings of my auditory nerve waking up.  The real miracle will the brain's eventual ability to make the neural connections that turn it all into meanginful sound.

[russboltz]

Lisa - Thanks for commenting. I was "out of it" far longer than I was prepared for, too; I still had post-surgical pain at the 3 week point (not much, but some "ear stabs" that were irritating) and there is still very slight tenderness around the implant and the incision.  I hope you do better than me and don't have the Roadrunner sitting on your ear like I do ("Meep! Meep!)!! Keep it up, I'm sure we'll appreciate it soon.

 

rusty

[russboltz]

Adam:

 

Actually, there is only one Medicare Plan, with "Part A" providing hospitalization and related services (100% payment, no copays/deductibles) and "Part B" which covers outside services, subject to deductibles/copays, which most people (including me) deal with by "supplement" plans. (Part F deals with prescriptions, which isn't relevant here.

I've found Medicare policy statements which make it clear that disposable batteries are covered under Part A.  Since  the price for disposables is fairly high (I figure $50 a month), that makes it worthwhile to get them paid for either at the time of purchase or by reimbursement.

I refuse to believe that I'm the only one with this question, so I'm hoping that someone here can respond. I've also asked it in the Hearing Journey forum, which (unlike this orphan of Med-El customer support) gets a few dozen posts a day) I hope can provide some info too but they seem to have less need for disposables. If I get any, I'll share, but I can't be the only over-65 to ask this.

 

rusty

[Adam]

ouch russ that is kind of high. I dont know much( ok anything on the subject) but make sure you search the cost of hearing aid batteries as opposed to CI batteries as even though the same size, they will be more expensive as they are a little more powerful but for a shorter period of time as they have more holes in the battery than a typical HA battery does.

[Sandy]

I purchased my first batteries from Med-el. Three hundred batteries cost $198.75 they last 5-6 days so I'm not looking at buying again for 500 days.

[simekj]

Sandy what is the shelf life like? When I had hearing aids, I seldom brought more than 6mths worth because the old one would not keep their charge long enough to be useful.  The new disposables may be longer lasting so perhaps they will last for 2 years?

I have only used 6 disposable batteries in 3months as I am happy to use the rechargeables. I guess it depends on prefence and if one is using Rondo or not.

[Matt]

Karen, I was given some disposables from someone that had died and they were nearly at the best before date. I didn't notice any difference between these and "fresh" batteries.

[russboltz]

Sandy, did you pay for those personally or were they billed to an insurer?

 

rusty

[simekj]

Russ, I am wondering if your beeps are because your THR are too low in the bass and mid-tones so you are not picking them up? 

 

when i was first activated i heard alot of squiggles - distorted sounds.  children sounded like dogs yapping.  dogs yapping sounded like children.  both high pitch yip yip yiiiiip. terrible.  it hurt.  this was because I had a terribly low tolerance to high pitches in the beginning.  They are not as bad now and have taken the longest to 'normalise'.

 

I went to the mall after activation (food) and it was a mass of squiggles.  For me these were like distorted sounds of various pitches morphing together.  Like when tuning a radio station fast back and forth but not on the station.  After a few hours I would pick up a musical squiggle vs humans talking squiggles (background sounds).  Ie i was differentiating the different groups of sounds from a pool of sounds. I could differientiate my friends talking as they were much closer and louder than the background sounds.  Except the children.  They were so loud and like excited yip yip yips just like dogs yapping.  Their yips penetrated the squiggles.  

 

With some sguiggle sounds, what I did to start with was to stare at objects and try and differentiate the sounds.  eg the boiling jug was a distorted sound - I call a squiggle.  I stared at the jug and focused only on that sound knowing there was a low grumbling sound and a higher pitched bubbling sound that i was supposed to hear.  After a while I began to differentiate the two sounds and i could distinguish the two parts.  There was another sound which was still part of the distortion but over time it reduced.  After I mastered the boiling jug, i went and did other things.  some time later I was in another room and i could hear a sound and I thought what is that and then i recognised that it was the jug.  The next day I did not need to think what was that sound as my brain knew straight away. 

 

Other sounds I needed to use hearing people to help me work out what I was hearing.  This helped me to identify problem sounds which i told my audiologist and they made adjustments.

 

 TV was very difficult for me.  It is very compressed and tinny at the beginning so I focused on listening to friends and family.  After a month I could listen to tv but with subtitles. But to start with it was irritating for me and high pitched and I could not tell men apart from women.  That did not happen very well for me until my 4th map (one or two weeks after activation).

 

 Each time you are mapped, they try and separate the low and high thresholds.  The bigger the gaps the more depth to the tones so the greater the sound quality range.  To start with they are closer together so alot of things sound the same.  As you progress, your nerves become accustomed and they can handle more electrical currents and the two thresholds are separated.  This is very individual.  sometimes a painful process but eventually you get used to it.  I just turn the volume down when it hurts and turn it up over time.

Trust this is helpful.  Every one is different.

K 

 

 

[simekj]

That's good Matt.  They have certainly improved the batteries. 

[russboltz]

Karen, that was an incredibly helpful post. It's almost like it is a Zen thing ("see the jug...hear the jug") and I'm not kidding about that. My situation right now is one I am sure will change, but it is akin to having the Roadrunner sitting on my shoulder going "Meep Meep!" constantly. Yes, it proves that I can hear things with that ear, but who wants everything they hear to be some stupid bird whose only variations are between "Meep" and Meep-meep-meep" and "Meeeeeep"?  Earlier today, I asked my wife what a sound was; she told me it was a bird. Great. Now I can hear birds who sound like a roadrunner!

But you have given me some real food for thought (literally) and I appreciate that a lot. Time will tell.

 

rusty

[Sandy]

Hi Karen, the shelf life for the ones I got this month is September 2015. I didn't get rechargeable because it was a nuisance to recharge every day. Also, hopefully my supplementary health care plan will pay 80% of them.