Activation

[Mary Beth]

@tmscarlett10How did your activation go?

[tmscarlett10]

Well, let me just start by saying that it wasn't what I had hoped for, but there is still hope. 😊

So there was really no sound recognition. But here's the funny thing, and I wonder if anybody else has ever heard of/experienced something similar... 

The audiologist was going through sound levels (or whatever they're called; I missed a lot; lucky my dad was there), and I could not make out any kind of sound. So she kept accelerating levels, even to the point where she said that she never reaches those levels on the first activation appointment (doesn't like to); and here is what happened... My left eye and side of face (same side as implant) started twitching like mad!!! 😂

And I thought it was so funny because I have nerve damage and partial facial paralysis on the left side of my face, and my eye twitches without me even noticing anymore. (Twitchy was my nickname in high school) 😄

But of course, I was a bit taken aback, and was wondering why that happened. So - I don't know if I have this 100% right - but I guess since that auditory nerve hasn't been used for twenty years, the sound kinda bounced off to the facial nerves. 

But we are not giving up any time soon. We are going to give it about two months to try to awaken the nerve and see if anything sparks. 

The audi went ahead then, and turned it back down to where I was not twitching every time I "heard" a sound. And she set three settings on my FineTune Echo, and told me to start at lowest one for a few hours, then if no twitching occurred, to accelerate to Level2 and do that for a few hours, etc. 

I have had it on the third and highest setting since about 7pm - not including sleeping time - and so far so good. It is about 7:30am here right now Eastern time, and I'm on my way to my second appointment. 

The other thing is that the DL Coil doesn't like to stay on - I am wearing Sonnet2, while waiting for my Rondo3 - and it's really frustrating. When I filled out the order form before surgery, the audi (different than current) told me not to worry about the magnet strength because I didn't appear to have a thick skull (How she could tell, I don't know). I also don't have thick hair; on the contrary, I have very fine hair, as this is how it grew back after radiation treatment. So, I don't know why it keeps falling off. 

[tmscarlett10]

Thank you for thinking about me @Mary Beth. I wasn't really sure where I wanted to post this, so I kind of put it off, and went through my didn't box of stuff instead lol. I didn't even get back home until about 4pm yesterday, and my appointment was at 9:30am! All the specialists are about two hours from where I live, and then we (my Dad and I)  stopped to run a few errands before heading home. 

I will also mention that my audi told me not to worry about therapy or the AudioLink, or anything except for my batteries and two buttons on my Echo lol - at least until we get some hearing going on. So, I can't really be much help with explaining any new tech or anything at the moment 

😄

 

[Mary Beth]

@tmscarlett10

I am sorry your activation did not go as planned.  Facial twitches happen to a lot of people is the setting of an electrode is too high.  Audiologists are usually able to change the setting to avoid that.

The DL-coil has various magnet strengths and all except the strongest magnet can be positioned in the - or the + slot in the coil.  The strongest magnet must go in the + slot.  Your audiologist may have other strength magnets in her office.  She can also make sure your present magnet is in the + slot.

I will be thinking of you today.  Let us know how your appt goes.

[tmscarlett10]

Thank you @Mary Beth

She did switch it down, and we may start working back up this morning. 

I forgot to mention too, that only four of the twelve electrodes responded when they did the test at the time of my surgery.

But she and the doctor say that there is still hope. And I have faith. 😊

[Mary Beth]

@tmscarlett10

I love your positive attitude.

If not enough of the electrodes are responding, maybe your surgeon will have a plan.

 

[polyesternapkinstowaway]

@tmscarlett10 Sorry to hear that your activation didn't go as you hoped but you have the right attitude about it and that can make all the difference.

Like you I require what my audiologist considers pretty high input strength. My left ear was consistent with my right. I'm on #3 program now of the four I was set up with and going well, but it's clearly still much quieter than my right ear. She did observe me for facial twitching the last time we turned we adjusted my right ear, but I have none (I actually have some facial nerve damage from when I was born according to my parents so wasn't sure what to expect).

Regarding magnet strength, it's funny that you might have an issue there. My audi noted that my backup processor shipped with the wrong magnet, different from what she ordered. I wonder if the same happened to you? She swapped me for a slightly stronger one (came with a 1, gave me a 2; I use a 3 on my first processor and that's what she ordered) and will give me the correct one at my follow-up on the 14th. Of note is that the "3" strength is the strongest magnet that'll fit under the "low" cover for the DL Coil. The stronger magnets get a bigger cover, I guess because they're thicker.

When you were at your appointment, what did your audi say about which electrodes responded, if anything (did it change from the in-situ during surgery)?

[tmscarlett10]

Today didn't go very well either. My audi did the same testing as was done during surgery, but interestingly enough, only two electrodes responded, instead of the original four. 

@Mary Beth, the doctor will order an MRI to check the implant, and I'm just going to keep wearing the Sonnet at least until I go back. 

@phobos512, I am going to stay on Program3 as long as there are no complications. I will keep Echo close by. 😉

I honestly don't know which magnet strength I got. That was one of the things she didn't show me. But I'm pretty sure that we ordered the weakest one, so that would make sense. I asked to change it up a notch, but we got caught up in other things and both forgot lol 🙃. I'll just have to keep an eye on it. 

Also, she didn't do that test when I was there yesterday. And I don't recall which electrodes they were. 

 

I'm still in this, just a little discouraged at the moment. Audi tried calling Medel for help and advice but got nothing. If the left ear won't work, there's still the right ear to look forward to. Only thing is, I was really looking forward to getting directionality; and I know you can't get that with only one ear. 

 

[Mary Beth]

@tmscarlett10

I am so sorry your journey is starting out like this but very excited to hear that imaging is going to be done to check on the electrode array position. Do you know when your imaging will happen?

[Megan L.]

@tmscarlett10 

I was thinking of you yesterday but I was not able to get on here! I'm sorry to hear you're having a frustrating start with your CI  We're all with you in this!!! I'm glad to hear that your surgeon has ordered an imaging test to see if there's anything going on. Please keep us posted. Sending you good vibes lady!!! 

PS. Maybe you can send a private message to the Med El moderator? Maybe they would be able to help you get in touch for some help for you and your Audi?? Just a thought...

[tmscarlett10]

@Mary Beth, I'm supposed to get a call before the end of next week about the imaging. I have my next appointment next Friday, and they would like to make it the same day, to save me a trip. 

@Megan L., thank you for the good thoughts. And no need to apologize, we all get caught up in things.

I actually posted something on FB as well, just wondering if anybody could share experience of ci failure; a lot of people suggested to call Med el. I honestly don't know who my audi some with within Med el, but I can try to find out.