Scared, Nervous, etc..

[violinmemories]

It's me again...Mere, I'm not sure what I am feeling at this moment. Excited? for sure, nervous? you bet, concerned? yup. I had my surgery two weeks ago, I'm healed up (had post op last week), I'm about as prepared for whatever happens next week at my activation.

 

I guess I'm more nervous because I am the first adult in the state of Delaware to have a Med-El implanted. Though my surgeon has worked with a different brand before and has implanted children in the state, he's never implanted an adult with Med-El, the local adult hospital has worked with the other brand and I'm assuming the adult audiologist has worked with the other brand as well. They have never worked with Med-El, I'm sure it's all going to work out but I guess it's the fear of the unknown of how the activation is going to go, someone from Med-El came in to train her or work with her on the equipment back in January when I saw her last. But I'm wondering if the programs vary much between all the brands much or will she know how to program/map me right.

 

So I guess I feel a little on edge about the whole thing. Don't get me wrong, I know the surgeon and trust his skills. Matter of fact before my hearing got so bad, I did volunteer work in his practice while ago and so I know he knows his stuff (he was named Top ENT for the State of Delaware back in the late 90's), he had done a previous ear surgery on me 13 years ago, so he knows me and my needs.

 

I'm just looking for reassurance as to what to expect at the activation next Wednesday so I am not totally shocked or surprised by stuff. Will my mom be able to come back with me for the activation? Is the activation similar to having a normal hearing test (like in a booth with headphones on)? Will the audiologist go over all the equipment with me when I am there, so I'm not wondering later "what in the world does this cord do or that piece do", do I get a guide book or sheet explaining what the pieces are (cheat sheet)?

 

Will my area Med-El rep be there to work with my audi in the beginning since it will be her first time working the equipment? I've got it in my head that my audi is gonna be stuck and not know what to do (silly I guess). After all she wouldn't be an audi working with CIs if she didn't have some training.

 

Sometimes it just helps to voice everything out in the open to alleviate concerns and nervousness. Thanks for listening and any input you can provide.

 

Mere

[Sid]

Mere,

Please relax and be optimistic! I'm sure your ENT surgeon you had for several years will be compassionate, supportive and assuring he'll make sure you get the best CI audiologist.

I've just been implanted with my second CI implant (MED-EL Concert w/FLEX 24) on 03/13/2013 with bilaterally activation on 05/01/2013. I can't wait to experience the difference in hearing bilaterally as everyone have been positively enthused about.

After your surgeon, the CI audiologist will be your next important person on your CI journey. I hope you will have a great one that will do his/her best for a successful hearing experience for you. I've been through four different CI audiologists within one year and it is a disadvantage to me because we don't get to bond with each other to be acquainted on what I have been experiencing as each audiologist is different.

For your initial stimulation, the audiologist will be setting up the parameters of your electrodes and you will be hearing/feeling a series of "beeps" before switching you on. I hope you will be startled and amazed when that happens! Things will sound robotic and some sounds very clear and loud that you've probably haven't heard in a long time. There will be no booth test at this stage, but maybe for your first or second mapping. I would encourage you to request a booth test and printout whenever possible as every clinic differs on what they will do. Please take notes what you've hear, don't hear, what sounds, and etc. I've found this very helpful whenever I gave a copy of my report at each mapping sessions to the audiologist.

Your audiologist should provide you with a orientation session on each CI components in your kit. If you want to do a preview of your CI components before your activation date, go to MED-EL website where you can download some excellent brochures on the various components.

Also, have your mom attend, too.

Good Luck!

Sid

 

[Matt]

Hi Mere,

I'm so excited for you - I was switched on just over two years ago and I'm loving my life now.

As Sid said, be prepared for a whole new world of sounds. What's your hearing history? I gradually lost mine over a 15 year period starting with high pitched stuff and eventually profound loss in both ears. My audi said after my surgery I would be able to go back to work - I never stopped work, just adjusted and was a champion lip reader.

The first few days can be really tiring and a bit stressful - try to have some relaxed time to give yourself a chance to mentally recover. I was switched on the first day of a five day conference and it was a nightmare. Some sounds you might think you know can be really different with your new "ear" - it took me a while to recognise a lot of my favourite music.

Keep us updated.

 

Matt

[violinmemories]

Thanks Sid and Matt for the replies. I am so excited about the whole process. Gonna be exciting to see what actually happens at the activation and what I do hear.

 

Some background on my hearing loss, I was born with SSHL and got my 1st pair of hearing aids when I was 6 years old. I was adopted from Bogota, Colombia when I was 2, my hearing loss wasn't discovered until my kindergarten screening. With the hearing aids my hearing had always remained steady, the audiogram never changed in either direction until I reached High School.

At that point I went from wearing in the ear hearing aids to needing the more powerful behind the ear hearing aids. I made it through high school and it wasn't until I was in college that suddenly my hearing changed in that my left ear which was more dominant suddenly took a nose dive and my right ear became more dominant.

May 2012 I tried to see if a more powerful hearing aid would work for the left ear, it did nothing but amplify noise and sounds to the point I was getting frustrated and getting headaches (ironically I was at the HLAA convention in Providence Rhode Island) and it hit me that the hearing aid was worthless. Good thing the hotel room windows didn't open, I was ready to chuck the new aid out the window. What was even more apparent was that others that were there knew what was going on and could tell that the aid wasn't working for me (didn't find this out till later). Lucky for me it was still under the 90 day trial period so I got my money back when I got home! At this point I stopped wearing the old left hearing aid because it did nothing for me. It's sitting in my room in a Dry n Store box waiting for me to donate back to the HA audiologist!

I scheduled my CI Evaluation and was told I was a candidate BUT the surgeon and/or hospital I went to didn't want to do the surgery on me!! They kept pushing me to have it done locally, that the surgeon I saw knew the local surgeon. So after discussing the whole visit with my mom, we decided to look at the local surgeon. I made an appointment to see him, he scheduled me to have the CI Evaluation at the local CI Center he uses. My appointment with them was really amazing and this time I passed (failed) with flying colors (4 years ago I had an evaluation and I din't meet the criteria).

 

My audiogram was 28% right ear, 12% left ear and with the hearing aids 51%!! I didn't even get pass the words to the sentences - that is how bad my scores were. I was essentially hearing NOTHING in my left ear. Mom and I sat down after the test to find out that I made it through and audiologically qualified! Now it was time to see my surgeon in January 2013. I saw him and got the call about 1 week later that I was scheduled for surgery March 5th!!!

 

I have a VP shunt on the right side of my head and because of that I cannot get a CI on the right side (apparently the shunt tubing is exactly where the CI would be). Also due to issues with anesthesia this last time I have made the choice to never go through another elective surgery. The risks with Anesthesia is too high for me now. I was born with a rare form of dwarfism (Morquio Syndrome) and with that comes issues relating to orthodpedcs and anesthesia (which becomes more difficult as a person gets older).

 

So activation is Wednesday!!!! I'm excited so excited and I will post how it goes!!!

 

Mere

 

[Sinker]

Hi Mere!  I remember you now!  You won an Ipad at the convention, right?  Looks like that event clinched the CI process for us both.

 

I've written before, but just have to repeat:  you are in for an amazing journey!  My family & friends are thrilled to have the "old" me back.  I just went to & successfully heard at a play last nite, a speaking engagement last week, the movies, restaurants...tons of events I would have dreaded or never gone to the last 20 yrs.  Using the T-coil gives me better hearing than hearing folks!

 

I can't wait for the Rondo!  I'm not used to a BTE & have small ears.  It will have an optional retaining strap for activities.  I have purchased several head-wear options as double insurance as I'm very active.

 

My CI audi is in training so a MedEl regional audi comes to the mappings.  I have my 3 month one this week.  The programming is different between the brands but not rocket science.  MedEl is just coming on the scene here in the states.  Shocking, but I think they will garner more of the market quickly now.  The Opus 2 is even so much better than the Opus 1 was.

 

You will learn the gadgets quick enough, but do immerse yourself in "hearing" right from the start.  Your brain is going to be working over-time & will be hungry for more.  Try the phone, Ipod, etc.  The first 3 months are critical to give your audi feedback about what things are sounding like.  Keep a notebook.

 

Best wishes,

Laura (NH)

[Camille]

Hello Meredith!

I'm writing from Southern California so your activation was hours ago. I'm wondering how you are doing because every activation is as unique as the individual. My mother was implanted 20 years ago by Cochlear America. At that time she had not been very successful with hearing aids (technology 20 years ago was not what it is today). Anyway, she started crying when she was activated because she was SO HAPPY to hear ANYTHING. Me, I'd been a very good hearing aid user, and when I was activated I looked at my audiologist, and the fIrst words out of my mouth were, "it had better get a whole lot better than this!". She looked stunned and said, "it will.". A month later I was testing exactly as I was with my hearing aids prior to my surgery. Needless to say, I was not happy, and I was concerned. Two months later it was a whole new ball game with my CI ear easily being my dominant ear. A year, then two years, my hearing is even better!!! And I love the new RONDO processor!!!! I look forward to hearing how you are doing.

Camille