How would you change a CI center?

[Mary Beth]

If you had complete control over a CI center including scheduling process, appointment sign in and the programming appointment…. what would you change?

[Michael S]

I am grateful to have an excellent CI center. However, I wish the center would offer specific guidance for auditory training to assist me.

[John F]

1- Much more real world information for patients when trying to decide on CI brands.  As is, you’re given a bunch of fancy brochures/booklets and told to decide on your own.  It’s silly.  And it’s difficult for a new patient to differentiate between a brand cheerleader and other voices.  Are they Bimodal?  What electronics do they use?  Audiologists need to be able to guide new patients.  Would I have chosen MedEl if I knew at the time how unfriendly it was with Bimodal users?  Probably not.

2- More consistent information overall when it comes to map appointments and such.  Some folks have great professionals that explain things, while others are left in the dark.  Sometimes in the same clinic too.  

 

3- Better levels of realistic expectations.  So much promised, so much let down.  It’s okay to not know something, it’s not ok to lead folks on chasing the proverbial carrot on a stick.
 

4- More training for professionals.  The number of times I’ve sat and watched somebody fidget and not know the MedEl software is annoying to even think about.

 

5- Integrated training.  Meaning, everybody should have to go through some sort of rehab right after being activated.  Some are able to, many are left to their own regimen.  Just include a few appointments alongside the map appts so folks have the tools and can learn faster to help themselves.

 

6- All these CI places really need a text based appointment system or even an online system.  It’s silly when they do not.

[Mary Beth]

@John F

I was fortunate that both my CI surgeon and CI audiologist were very honest with me prior to my first CI surgery.  No promises.  In fact, since we were implanting an ear that had not processed any sounds at all for the past 24 years (but had heard to varying degrees prior to that), my surgeon would not implant that ear unless I agreed that I understood that CI ear may only help me speech read and may never understand any words independent of visual cues.  Since I was desperate and had nothing to lose, I agreed and we went forward.  That ear is an amazing CI ear.  Phone calls, music…. Just amazing.

As a teacher of the deaf and as a mentor I have witnessed other CI centers and CI audiologists also set realistic expectations prior to someone agreeing to surgery.

It is very important to set realistic expectations and for those who are implanted to share both the amazing benefits of having CIs as well as any difficulties or frustrations.

There is so much science behind CIs yet there is no way to accurately predict someone’s real life hearing experiences and musical appreciation prior to surgery, activation, follow up appts, training and time.

[John F]

@Mary Beth Sadly, not everybody has the same experience.  My experience is the complete opposite as yours down to the surgeon actually lying.  I figured this was for a hypothetical CI center hence my suggestions.  If I were to make changes at my CI center, I’d simply get rid of it.

[Mary Beth]

@John F

This was aimed at a hypothetical CI center.

As people who navigate through all processes at CI centers I think we are best able to make recommendations that would help everyone.

 

I am sorry you did not experience the same realistic expectations etc in your CI journey.

[Anthony Canada]

I would have liked them to be clearer during the candidacy process. It felt like a dam where they would provide no information until you qualified. After qualification the process was excellent. 

[Lauren]

I’m fortunate to have a good clinic I like. 

The only thing they lack is an online patient portal, to include no other way to schedule an appointment without calling or emailing (I often just email my audiologist directly). If I had control over a clinic, I’d make sure there was an online portal where patients could request an appointment and clinic staff could approve/deny based on any scheduling changes. 

Other things my clinic has that I would keep are things like the floor models of current CI models and accessories. So people could see and touch and hold CIs and accessories they’ll eventually have. My surgeon also had internal implants available so I was able to hold a similar one to what eventually went inside my skin. It was super cool. 

And for appointments my audiologist knows her patients well enough that she knows how much time to schedule so I’d make sure audiologists and clinicians do the same. I tend to know what I want/need so we hardly ever go beyond an hour now that I’m past the rough first year. 

[Dave in Pittsburgh]

I’m well pleased with the service from my CI  center both my audiologist and 

I agreed with Lauren many CI centers need to update their methods of communication I’m very fortunate to be able to email audiologist

are all testing equipment and software up to MEDEL specs.??

We are at the mercy of audiologists from what I understand with some audiologists it’s a let see what happens and the recipient’s really don’t understand why or what is happening if they are having issues 

When I was going thru this it was only my wife and I  see and talking with the audiologists at no time was their a MEDEL rep or even at MEDEL recipient present to explain in real life the experience after all this is a life changing experience for the good 😊