Thursday, July 23, 2009

Mapping #7---Waiter, there's a fly in my ear.....buzzzzzzzz.....

To preface this post.... yes, it is about a mapping. Yes, it's my seventh. Yes, I realize some people *ahem* in the blogosphere world are overinundated with the newbies to the mapping experience blogging on every last single technical detail. Please feel free to note that not all of my posts are related to my cochlear implant experience and include quite a bit of my exciting life as a mom to a two year old. Oh yes, even from here I feel the deaf peeps out there dropping like flies from the sheer boredom of.... oh.... another mapping? and oh... mommy to a two year old? *smile* This is simply my record of my journey with a cochlear implant and the mappings are important benchmarks in this experience, although they may not read as the most exciting blog posts.

There really aren't too many of us that grew up with a severe to profound loss that are blogging on the experience of receiving a cochlear implant as an adult. From casual observation, most adults with implants seem to be the ones that are deafened later in life. I'm surely not the success story on the take home box of Nucleus Freedom accessories or the DVD passed out before surgery. No one is asking me to talk to new "recruits" and share my heartwarming experience. I didn't go to my first mapping and cry tears of joy. No, I cried tears of absolute horrid misery. For what it's worth, I do have video of my first mapping that I'll likely never share publicly, and I'm absolutely snarling in it (plus the one year old in the background climbing furniture is absolutely priceless.) :-P So, in the spirit of my journal, I'm recording ANOTHER. FLIPPING. MAPPING. SESSION!!!! ....and if someone else wants to think about doing this and reads my blog, they'll get as always... the good... the bad... and the ugly from my point of view. So... that said... on with the show.

Today's mapping was actually an emergency session for me... not necessarily of the most dire kind, but I was fairly frustrated. I've been experiencing so much static popping and background noise that it was really disrupting my listening pleasure. To compound matters, while I could still hear fairly well with the CI, I wasn't having any new break-throughs and sound clarity, especially with voices, was regressing. I started asking my husband, James to repeat things several times or opted out of conversations with him because it seemed like too much energy to comprehend. Talking to him on the phone has been short and quick because his words started sounding slightly muffled. I could almost catch what he was saying, but I missed more than I was getting, and that wasn't without serious concentration on my part. My video phone needs to be re-routed with someone from the company and is down, so I haven't even had that as a back up lately.

My audiologist fit me in on a day's notice by seeing me yesterday morning (and not for lack of not having too much on her plate already... She's just cool like that... but I've established that already in previous "ode to the cool audiologist" posts. :-) None of the maps were working that we were trying out, so she went ahead with both tests to check the electrodes (listening to the beeps and the neural test... and if someone wants to give me the official name to each to refer to once and for all, I'd appreciate it.) The gist of it was my old map was out of compliance and causing distortion, but something about my electrodes has changed slightly and is now being "monitored". My audiologist consulted with another audiologist, and she assured me that my electrode test was within normal range, but yet... big yet.... it was different enough to need to be tested again in 3 weeks to make sure all is well. *IF* there is a problem it's with the internal equipment... yep... I said I would share the good, bad, and ugly, didn't I? I'm being monitored to make sure the equipment locked and loaded and sealed inside my head is functioning fine. Nucleus has great reliability, and my testing isn't cause for alarm, but it's never fun to have to wait and make sure everything is actually okay.

Meanwhile, my audiologist finally gave me a mapping that clicked and made me go "ahhhhhhhh". Two hours after I arrived we were just starting to get somewhere. I felt so bad for her because she is a perfectionist, and I knew my situation being tossed at her yesterday was a handful and not fun. She said she gave me a map that most people would hate. She says it's pretty unique. It's in compliance with my electrodes so that distortion shouldn't be a problem like it was when I arrived. She basically said she did it by changing the parameters and beyond that I have no idea what she did... just that it worked at the time.

She wanted to do some tests before I left. I sat in the booth and could swear there was electrical buzzing. She came in there and listened and said there was something so I assumed it wasn't static. So much for soundproof booths, right? She actually told me that's a falsehood anyway and that these were just more sound resistant, not sound proof, not something my little deaf self ever noticed. The test scores were ridiculously great. In June I had 79% on my sentence test (HINT test). Today? 96%! Sur-stinkin'-real! :)

Right when I thought the guy on the recording and I had a blossoming relationship, he trampled it with his horrible one word test. This is the first time I've had this test post-CI, and I was blown away by how fast the guy went.... He would say "ready...*quick pause*... boat" one second pause "ready *quick pause* make"... Jeeeeeeeeeeez Louise!... I couldn't hear myself think because half the time I was saying what I thought he just said as he was saying "ready" before the next word, which would make me lose my thought, panic, and ...then... rinse and repeat! I could never just relax and catch up with that guy... He definitely was NOT from the south... and that test was LOOOOOOOONG. I do. not. like. that. test. I scored 64%. I liked my other much score better. :-P

For the last test, we did the usual bells and whistles to plot the lines on the audiogram. Seriously... not bad.... 15-20 decibels straight across the board. Last time it was 20-25 decibels... so it was about the same... but a little better. One example of how much my audiogram is changing... at 6000 Hz, I have a 120 db hearing loss (and that is with or without the hearing aid on)... We are talking... deaf as a doorknob... flat out.... not a peep to be heard...completely deaf.... but pop on the CI on it's 15 db. Boggles my mind still. Technology is pretty amazing. Needless to say, my brain hears sound at that level.... it doesn't necessarily mean it's processing information at the level, but it's all uncharted territory for my noggin anyway.

So fast forward to this evening.... and the static is back somewhat, and it is annoying me to a degree. I can still hear well in spite of it, but right now I'm relaxing without it on because I need a break from the buzzing in the air. I had it off earlier when I was getting Aidan ready for bed, and I couldn't understand anything he was saying. I didn't realize just how much I have come to rely on it for understanding my son, and that was extremely frustrating to pretend to go along with what he said just so I could finish getting him ready for bed at the time. I put it back on while we read books because we do like to talk as we read. I am glad that I've started teaching Aidan some basic signs, and this just reinforces my desire to continue that so we don't ever have a reason for not being able to understand each other. The static's not too bad, but I'm concerned of course. Most likely this will work itself out in time. I'm not sure my audiologist is going to be really thrilled to open my email in the morning and read tonight's news, but she did say she will be seeing a company rep this week so she can go over my case with her.

....and that is the bare naked truth.... the good, the bad, the ugly visited yet again....


  1. Hi Michelle,
    I think we "met" earlier this year too, but I never got your blog on my list so now it is so I can follow more! I love hearing stories from adult CI users to help me see into my Aiden's world as much as possible. I found this post very interesting, yet scary. I hate the fact that Aiden can't tell me if he's hearing static, if sounds become muffled, of if he's losing any of the letter sounds ... just downright scary. His audiologist said he's good for another 6 mths (he's at 15 to 20 db too ... isn't it just amazing!?!), but I said NO WAY! Maybe three and now I'm getting nervous about even waiting three months! What do you think? I wish I had one of those sound proof (well, I guess not really soundproof huh?) rooms in my house! I try the Lings with him and some days he responds and some days he doesn't.

    BTW ... your Aidan is just adorable! I love the "lopsided halo" comment. Sounds like my Aiden! The only time I sit down is when he's sleeping or with his daddy. He is nonstop, which secretly, I truly love!

    Anyway, I hope that everything is ok with your internal equipment and that the next three weeks don't seem to drag!

  2. Thanks,Tammy.... just look at it this way though... even on a really bad day I still got the most amazing test scores I've ever had in my life.... so don't second guess your decision with Aiden. Even when he might need an update he's probably getting a lot of benefit. I could hear better with my CI having static and being slightly distorted than I could with my HA...

    I'm only 4 months past activation, so I still have a lot of physical changes (tissue growing) that will affect my maps frequently in the first year. I seem to need updating more than most do though anyway... my audiologist just calls me an outside the box case. :) ...she did say once I got to the one year mark it would be every six months.

    If you think Aiden is a little off, there's nothing wrong with making an earlier appointment to check out your concerns and get a mapping done to make sure everything is up to date. You're the one with him everyday, and I have a feeling you have great instincts when it comes to what is going on with him!

    I would love to see our Aide(a)ns hanging out. I wonder which one would last the longest... but it would probably be an all day marathon to find out!

  3. In my opinion, you're doing GREAT with your CI! I completely agree with you about the words test! I wrote a very similar paragraph about my CI testing and that man's voice :)

    I hope everything works out and that the static goes away! I had some problems with both of my implants in the beginning, and it can get pretty frustrating/frightening.

    As far as the comments above, I go for mapping all the time. I've had my first implant for two years, and my second for 4 months. The longest I ever went without a mapping has probably been 4 months, which was after I had my CI for a year or so. My audiologist said that since I'm a teen, hormonal changes and such can affect maps and make you have to go more frequently. Sinus problems can also affect how often you need to go for mappings. There have been times where I've had to go back the next day because things just didn't sound right, but that's pretty rare. With my new side I'm going back every 3 weeks to a month, it seems.

    Tammy, if you're worried about Aiden's hearing, don't hesitate to bring him in! I would imagine it's more difficult to tell the sounds a baby/toddler isn't hearing, though.

  4. PinkLAM, isn't that guy really awful? I like to think of him as a classic example of a frenemy. :-D I had to see if I could find what you said about him on your blog.... and I was amazed at how well you write.... not even for your age... just period! I hope you think about doing something related to writing as a career... or dabble in it anyway.

    BTW... do you have any idea why your CI cuts out? I have to admit that is one thing mine has done that I haven't thought to mention to my audiologist. I never thought it would be internal and just assumed maybe something with the processor that worked itself out... It hasn't happened in a week or so, but it has def happened a few times... oy.

    Did you ever have to deal with static that went away? I am pretty certain now that there is always something electrical (but sometimes it's a faint electrical sound, like in the sound booth for the hearing test!) around me when it happens, but still... it's not pleasant and doesn't seem to be a normal sound.

  5. Thank you! I really appreciate the compliments! I've always said that if Med School doesn't work out, I'll become a writer, so we'll see. ;)

    I am happy to report that since my last mapping a month ago, (OMG, it's been a month and I don't need a new mapping...break out the party hats!) it has not cut out a single time. The cutting out can be caused by several thing. First, check the connection between all parts of your processor (processor to controller, coil to processor, battery rack to controller, etc.)That is often the problem, although in my case it was not.

    On my first side, it was a combination of two things. The main thing was that the connection between the internal magnet and the coil magnet was not strong enough. About 4 months after getting that side turned on, I had to get a special prescription from my surgeon for a #6 magnet. They don't sell those in the online store, and they come with a giant warning!

    The second thing, is it was also a power issue (it was for both of my ears, actually.)
    On the Freedom, and maybe on the other implants, I'm not sure, there are two setting when your audiologist is mapping you. Auto-power and manual power. Auto-power is the default, but often times in the beginning with lots of scar tissue and swelling that might go up and down, it can cause the processor to cut out. If it gets to the point that it bothers you, have your audiologist change it to manual power, and raise it 5 to 10 percent. I think on my right side it's set for 75% and on my left 85%? But you may not need it that high.

    I have never dealt with the static. Are you sure you don't have the T-coil setting mixed in with the mic and turned on? And that it's not any environmental sounds (refrigerator humming, fluorescent lights, something like that?) I'm sure you've already checked that, but just making sure! My audiologist recently told me abotu a patient that transferred to her from another audiologist. When she finished mapping her processor and turned it on, suddenly the lady's face started twitching like crazy. My audiologist quickly turned it off, but the lady reassured her that she had developed a "neurological condition" years ago and had been to a ton of doctors, and was on a combination of medications to control it, although they weren't helping much. Apparently her and her other audiologist didn't bother to think that it could be facial stimulation from her CI,and she hadn't noticed thatit only happened when she could hear. And like that, my audiologist cured her neurological condition. My point is, sometimes people miss the obvious stuff, so just wanted to make sure :)

    Have you tried getting a Cochlear rep at one of your mappings? I had to have one at a few of mine in the beginning to figure out how to fix the cutting out.

    Sorry to write an entire blog in your comments!

  6. Thank you both for your input. I'm definitely calling tomorrow ... if for anything, for peace of mind. I think it's funny how audiologists are so different and that the longest you've been between mappings is 4 mths (PinkLAM)! I think we definitely need to push for at least every three right now and wait for the 6 mth interval after at least his one year hearing bday! PinkLAM, I look forward to checking out your blog too!
    Oh, and Michelle, you are right, it would be a whole day marathon to see which Aide(a)n would last the longest! The only reason I'm sitting now is because he's taking a short nap! Whew!

  7. Just curious... do you have any auditory memory that enables you to understand speech, or did you start from scratch?

  8. PinkLAM... what a story about that lady!!! Unbelievable! Glad she was "cured"! Poor thing! LOL!

    You are a wealth of knowledge for 15! I have a deaf friend who is a doctor and has cochlear implants. If you want to email me, I can tell you more about her. I'm sure she'd love to hear from you.

    I don't have the t-coil/mic setting turned on... it's one or the other... I'm beginning to think the static is very much related to all things electrical, but to an extent that is surreal... I know the Cochlear rep is going to look at my case this week... I'll ask at my next appt if I can come next month when he/she is in the office if things aren't improving. Thanks for the advice!

    Tammi, let us know how the mapping goes! :)

    Nabeel.... my hearing loss has been prominent since I was at least 3 years old... it's kind of murky then how much loss I had... when it actually started.... but I grew up oral... I only have one copy of my childhood audiogram and I have no idea where it is now. My parents and grandparents are deceased, but my mother journaled about my hearing loss... so I have some information.... just not the numbers. I didn't actually get hearing aids until I was 5 even though my loss was detected at 3!! ... and I had already started speaking, but my mom said I had missed out on a lot... I had extensive (TONS!) of speech therapy... and my mother was a very ambitious teacher, and I was probably her biggest challenge... but she worked with me a great deal. That made all the difference in how well I aquired speech skills, auditory training, language skills...etc... at a young age and I learned to compensate (and fake it, fake it, fake it!! LOL!!!) I've always been "complimented" by my audiologists *ahem* on my ability to use my residual hearing beyond what is considered the norm.... but honestly, that was just my mother and her tremendous drive when I was a child and long before IEPs and ADA laws came into play.... she was my advocate. So yes, I have auditory memory to a certain degree... but that said... much much much of what I'm hearing is brand new... I mean... oh... wow... the high frequencies have been a complete shock and overload to the system... I'm guessing that a lot of my auditory skills come from the lower frequencies where most of my residual hearing is and it has helped "guide" the higher frequencies I've never had... I just wish my mother could've known two things before she died... 1. that I'd fall in love with the deaf community, learn and come to depend on signing for myself, and use it for a successful career as a deaf ed teacher... and 2. that there would be a technology that would give me the sounds of birds and crickets and my son's voice and that I would be okay. She died worried about my latest audiograms, and I read her journal recently and just wished I could've given her a glimpse of my future then. *smile*

  9. Thanks for sharing your story! My hearing today is probably worse than yours. But like you, I don't have any high frequency hearing. I found my 2002 audiogram and it shows 70db HL at 250Hz, 95db HL at 500Hz and no hearing at 750Hz and above! I was surprised myself! Ill post those and other audiograms I find on my blog with more explanations. Yup, I love numbers!

    Also like you, my mom and speech therapist trained me to speak clearly and understand some speech. My audiologist says it's what's between your ears that's more important than what's in your ears. So im training myself with an online speech test. Even without the highs, I hear every letter except F and S. I just gotta train my brain to tell the difference between how certain letters sound.

    Has training your brain with CI also helped you improve your ability to understand speech in your other ear with just a HA?

    As for compliments by audiologists, exactly what is the norm supposed to be? I wonder if I am even at the norm or still below it. I do know that most speech takes place in the low frequencies(transposition made no difference to me) im now testing different programs on my HA and comparing the results which ill post. I was able to score 65% speech on an online test with my HAs programmed at 10db(125Hz) 10db(250Hz) 60db(500Hz) and nothing above 500Hz I could still understand speech but it sounded muffled.

  10. I honestly have no idea what the norm (seriously... norm is a funny word anyway considering the topic) for someone with my loss is supposed to be to an audiologist when they say something like that... I said that somewhat "tongue in cheek". :)

    I can't say I notice a huge difference in my left ear either... it is what it is and no amount of wishing is going to change what it is able to do or not able to do at this point. Maybe that would be a question to ask someone who received a CI and didn't understand speech at all prior to receiving one but understands now. It might be hard to find an adult in that situation, and children probably wouldn't be able to answer that question in detail like you want.