A few weeks ago I had my ninth mapping. My audiologist is on maternity leave so I had the pleasure of meeting one of the audiologist legends at the HEAR Foundation whose name I've heard for years. Mary Lynn had a completely different style from Michelle from personality to technique. I still really miss Michelle though, and I can't wait to work with her again when she's back in January.
Mary Lynn got right to the point and had me listen to a lot of different sounds that I could see on the computer. She said they were like keys on the piano, and I told her what was comfortable and what was tolerable and what was barely discernible until she had a program mapped out.... just like that! She flipped it on, and I was dazzled. I could clearly make out the little nuances in Mary Lynn's voice. I told her the sound of this mapping was the most fabulous yet from what I could tell! It seemed so crystal clear and on the money, but then something funny happened. Yeah... my eye twitched. In fact the right side of my face twitched with each sharp, crisp syllable that Mary Lynn spoke. The lower rim of my eye was vibrating like a chain saw. Real attractive, mate, eh?
Reluctantly I told her that I was twitching. Very reluctantly. Blah. I offered to "live with it", but she was having none of that nonsense. Before I left I had three electrodes turned off in order to quell the twitch. She said the other electrodes would kick in. *sigh* She sent me down to the parking lot to listen to the traffic on the freeway to see if I could tolerate my new program. I could. Easily. Instead of playing in traffic, I went to give her the good news. (...totally kidding about that traffic thing... :)
I left my appointment and talked to my friend, Melissa, on the phone for a while to road test the new program. It wasn't pretty. I found myself faking more of the conversation or talking more than listening... an old habit to squeak by. My car produced a lot of static feedback with the telecoil on making it even harder to hear. By the time I parked the car and turned it off though, I was able to follow more of what she was saying, but since then I've gone back to using my videophone for some of my more important calls, but I still call up all the besties (except Dannette who gets to see my mug on the videophone) to give them my love and use them for auditory practice. They have all been patient with me so far when I know it can be a little tedious talking to me lately.
The game plan is to turn the electrodes back on at the next mapping and see if my face can adjust to all the excitement. It's kind of funny that on one hand, there's really no new breakthroughs for me since that mapping, and I feel like I'm struggling more now (just a little...) ....but.... oh the sheer massive power of that thing when it hasn't been on in a while!!! I had a splitting headache over the weekend and just couldn't tolerate the sound of the CI. I wore my HA in my other ear and just relaxed in the familiar lull, but it was so frustrating to realize I could understand hardly a word my son said this weekend until I finally put on my CI yesterday. (It also made me realize that I hadn't been putting in as much time signing with my son lately, because he only signs when I prompt him to, not when he wants to say something.... sure came back to bite me when I needed it!) Putting it back on though... whew.... so much power I thought it was going to blow me out the window. Even the silence will come blasting in, especially after a long break without wearing it. Loud silence is probably the hardest thing to explain to both(non-CI wearing)deaf and hearing people because it seems like such an oxymoron... How can there be such a thing?
Anyway, stay tuned for Twitchy Face Chronicles (a.k.a. Mapping #10) in the near future.
Have a wonderful Thanksgiving everyone! :-)
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Ah, this happened to me with my first implant. Instead of turning the electrodes off, we just found the maximum comfort level I could go without twitching and set it there. We still re-measure them at each mapping (and it does change), but it hasn't been a problem since I've gone bilateral and need less volume.
ReplyDeleteHope you get it figured out and have a happy Thanksgiving!
We were really short on time with that appointment in comparison to what I'm used to... She said next time we'll work more time in there to iron out the kinks and hopefully get them back on with a better program. I thought you were a volume junkie anyway... :) So you had even more power in one ear before going bilateral? Ouch! I've been trying to imagine lately if I could handle going all the way with both ears and not being able to dial it back in one ear to the comfort level of being "deaf with a HA". That all or nothing in both ears has given me pause for thought lately! (I'm sure I'd probably appreciate it if I had it though...)
ReplyDeleteI do get twitching, I have the same problem as you PinkLAM, they find the max volume that I can go without twitching and leave it there!! They cannot turn the electrodes off for me that causes twitching because it occurs on several electrodes.
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Melissa, I wonder if it's possible for it to go away on its own if you kept the program and used it for a while???? ....not that my audie was interested in letting me find out or anything... :)
ReplyDeleteMichelle,
ReplyDeleteYou should not have to have electrodes turned off to control the twitching if the settings can be lowered. It is better to hear a little bit with the electrodes than to have them off completely. Hopefully you will get some new options at your next mapping....keep us posted!
Laurie
I get twitching during mapping individual electrodes because it's such a focused sound, but when they turn them all back on together I am ok for most normal sounds.
ReplyDeleteI did get one program designed for noise that I always had to turn the volume down on (it ended up that loud because my audi kept saying 'how does this sound' in a quite room to test a program for noise!) I've had that map for 3 months and I have noticed that I don't have to turn the volume down as much anymore... so maybe we can say the twitching goes away over time...
I only get twitching during mapping individual electrodes but when they're all on I do have twitching so they turn it down to before where the twitching occurs. It only twitches when im in the clinic.
ReplyDeleteThey won't keep me on the program level that my eye twitches at because they said it would not be fair for me to go out in the "real world" with a twitching eye, I agree. but the levels does change yearly, so i can get more volume in a year or two or when my eye decides to play nicely :P
Can the audie rollback to your old map where you didn't get twitching? On another note, is it the twitching that always limits how well someone hears with CI, be it 20, 30, 40db? What other factors are there? I don't have a good understanding how or why some with CI hear at 15db while others hear at only 50db. So much to learn!
ReplyDeleteI only get the twitching when I'm hooked up and going through the electrodes, I'm not sure about Michelle.
ReplyDeleteI like your blog, keep it up!! I spent a while reading it earlier :)
ReplyDeleteHi Laurie! I'm looking forward to getting them flipped back on because I'd feel better if they were all getting a work out! I think the time of our session was really the biggest factor in not allowing her to play with it more, so I have a feeling we'll get somewhere next time.
ReplyDeleteSara, that's so funny. I can imagine how that hurt your head getting used to that program! I've always begged for more power because the first few months, I'd go home and adjust in a day or two and have to wait for weeks to go back. Now, I'm not so much into the volume as I am the fine tuning because it seems pretty loud even a month out... and my twitching happened with the full program on... individually everything was fine.
DD, you ask the most technical questions to the wrong person! LOL! The twitching is over-stimulation of the auditory nerve if I remember correctly. It's an adjustment for me physically as well as mentally to get used to sound. Seems like this time mentally I was able to handle it much better than physically because I REALLY liked that program. I didn't get my new map tested, but if I had been, I doubt there would be much difference between my last few audiograms and what this one would've been. I've stabilized about 15 dB across the board, but what keeps improving is my understanding of what I hear. I don't think I would have improved this time over my last mapping though and maybe wouldn't have done quite as well, but I don't think it would have been too far off either. I'm struggling a little more on the phone than usual, but otherwise I'm doing well.
Melissa, thanks for the compliment! I'm going to add your blog to my list so I can keep up with you too!
I'v got a question!! What's the trick of gettinng below 30db in your audiogram?? Hehe, I know it varies on people.
ReplyDeleteMelissa, I was looking at your blog and wondering about your test scores too. I haven't had a chance to read in depth, but I did see where you recently improved in speech comprehension on one test from 30 to 50%, right??? That's after 9 years? I'm amazed at how much improvement you still have! I was wondering, though, why they only map you once a year to adjust twitching. It seems like if you could tolerate more in the mapping you would hear more in general and they'd have you back more often to readjust. *IF* I were you, I'd be asking for more frequent mappings regardless of the fact that it's been nine years because obviously you haven't stabilized as you continue to improve after all these years! You are so young, and I'd be pushing the envelope with mappings considering your latest improvements. I have a feeling you'll get there! :) I hope some of the vets to the process weigh in here with their opinions too.
ReplyDeleteI don't experience twitching in every day life, it is only when I'm at the CI centre and hooked up to the computer.
ReplyDeleteI got my scores back and they were 35, 40,35,40,35.
But the audiogram was carried out in noisy situations since there was building work directly outside the window!!
Yeah everyday my speech understanding(without lipreading) is really improving, i enjoy it being able to hear my mum and sister without having to read their lips. But I still do sometimes.
Ok, so this is being written from my phone since I've been in the car for 3 hours (not including the 3 hours from last night) and have nothing else to do, so please excuse any spelling/capitalization errors :)
ReplyDeleteMichelle- since going bilteral putting my CIs on isn't such a "shock". Since I'm hearong the same wau from both ears, i'm not constantly trying to balance it out by constantly turning up the volume. I think you'd love being bilateral, but you could say I'm biased :)
DD- mapping levels change and fluctuate, so ehat was a good map a month ago might sound horrible today. It varies depending on the person. Twitching would not cause a decrease (well, i guess technically an increase) in the levels you hear. The twitching may make loud sounds not be as loud as you want them, but have no effect on the threshold of quiet sounds you can hear. So, if one could hear at say, 10 dB then had to get their map adjusted b/c of twitching, then they should thoretically still be able to hear down to 10 dB. I know you left a comment on my blog but my phone wont let me get to my blog :( I'm not sure why..I'll reply later though-promise!
i really hope this goes through!
Hey Michelle, I had a similar experience with the mapping... not twitching, but overstimulation with a tingly feeling above my ear.
ReplyDeleteI don't know why but I'm not getting notifications of all of the replies on my blog... some but not that many... Darn Blog Spot! :) Melissa... I can't believe you are tested with so much noise around you. In that case, I have to wonder how I would even do... I'd bet you would score higher with a more sound resistant booth.
ReplyDeletePinkLam... you may be right about two being easier than one as far as adjusting to noise goes. I'm at the point where I just cringe putting the processor on in the mornings, and when I'm at home working on classes I tend to keep things ho-hum quiet lately. It really does require commitment to keep progressing and benefitting. I am starting to be more understanding of the many deaf that get frustrated and stop wearing it.... and in NO way do I mean I would ever stop wearing mine, but I do kind of understand the mind-set that would lead to it and how easy it would be to slip in a familiar routine. I once had a student in high school that would hardly ever wear hers and when I convinced her to wear it she was miserable with blinding headaches (no wonder I realize now.... she hadn't been mapped in months and never got in the habit of wearing it or had any type of auditory training). She was profoundly deaf and I never understood why she had the surgery in the first place because she had zero interest in wearing it. (I was under so much pressure to make sure all HAs and CIs were worn 100% of the time even if the kids absolutely hated them and would take them off out of my eyesight...)
What happened at that mapping Nabeel? Did you end up dialing it back? I think I could live with tingly ears more than twitching eyelids. :o) LOL!!!!!!!
Is anybody experience weird feelings? Since for a while now, I keep experience weird moments, I cannot really explain it. Sometimes I just feel really weird, as if tingly or shiver a tiny bit. I have not told anybody since I cannot explain it also they might not be able to do anything about it. I only have it when my CI is on, it is not everyday and happens whilst in noisy places. It does last maybe 5 mins and if it lasts any longer I will turn my CI off until I feel i can turn it back on.
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