Six Months out, and new mapping

Wow – I am so totally pumped today! My six month post activation appointment was great! My test scores were amazing… I got so emotional, had to reach for the kleenex!

My “Sentences in Quiet” scores have gone up from 62% in Sept 2010, to 79% in Nov 2010, to a whopping 91% today! WOW!

“Sentences in Noise” scores have gone from 35% in Sept 2010, to 60% in Nov – to today’s  79% with speech-to-noise ratio of +10, and to 50% with speech-to-noise ratio of +5. The single word scores (always difficult) have gone up from 32% in Sept, to 62% in Nov, and still the same at 62% today. Still good!

The only negative is that the residual hearing that I had left after surgery is gone… ah well, they said to enjoy it while it lasted , because it probably wouldn’t. I have one tiny spot at 250hz audible at 70db. The rest is gone. But – really, that’s OK. I’m getting great results with the CI, and still have aided hearing in the right ear.

She also made some program changes for me, and gave me choices to see what I like the best. I seem to be one who prefers the “P” or Paired stimulus rather that the “S” of Sequential electrodes firing. Seemed more clear to me. Additionally, I now have 100% T-Mic on 1 program, which seems fine. And for music, she raised the IDR to 70 on 1 program. I’m just starting to get used to these changes, so… I won’t really know for sure what my preferences are for a while. 

I won’t have another appointment for 6 months, and I can’t wait to see how I do then. At that time, it will have been 1 year since activation. So much has happened!

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Oh, thank Goodness! I do feel better. The meds worked pretty quickly, and after the second day, I felt that I no longer wanted or needed to be drugged. So, I’ve been home and recovering for over one week, pretty much medication free. Unfortunately, I caught Bruce’s cold. That resulted in a lot of congestion and more of that off-kilter feeling. So, I took Aleve for a couple of days. Maybe one more Meclizine early last week. That seems to be the drug of choice for vertigo sufferers… also for those very unfortunate people who have had Meniere’s Disease… a truly horrible and debilitating disease. I thank the good Lord I don’t have that.

So – back to work tomorrow! I admit to having really mixed emotions about that. I hope to transit from a full-time Worker Bee to a more leisurely part-time schedule in a few months. Those wheels are turning, hopefully in the right direction! We’ll see.

Now, I’m in the midst (with Bruce’s able assistance, of course) on navigating the employment benefits that I have, and using Short Term Disabiliyt for my absense from work for 7 days. Forms, authorizations, etc.

My last day off before going back tomorrow… I think I’m ready!

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Take vertigo for a spin … not recommended…

I’m admittedly a bad blogger… I feel guilty about not posting, then I forget about it for longer and longer periods of time. Daily entries seem so narcissist to me ( me, me, me… all about me!) So, I suppose I’ll just post an entry when I have something of note to write about. And yes, that would be something of note to ME!

So, something noteworthy happened on Sunday! I have never had anything like this happen to me… having read about other people’s experiences with dizziness, I was sympathetic. But now, with a first hand look into this … it really sucks so bad!

I’ve had quite an adventure – one that I wouldn’t wish on my worst enemy. I had extreme vertigo on Sunday morning, and have never experienced anything like it, so sudden and severe. On Sat morning when I got out of bed to go into the bathroom (maybe 20 steps), I noticed that I was “listing” to the right, and had to brace myself on the dresser. But after a few minutes felt better, and had a normal day’s activities. Early Sun AM when I got up during the night for a potty break, it was the same “listing sensation”. Back to bed for a couple of hours, and then when I just rolled over, it was horrible. The dizziness and feeling of gravity pushing me was so strong and so very frightening. The smallest movement of my head sent the room rolling and jumping with me trying to hang on. I could only sit up with my husband’s help (thank goodness he was right there) and he helped me back into the bathroom in time to vomit. So, the next few hours was just more of the same. Extreme vertigo, vomiting, trying not to move my head. Never having experienced this made it much more scary, I think.

Bruce got in touch with our neighbor who is an ER nurse… thought perhaps the flu. No change throughout Sunday, except that I vomited every time I tried to sip water. So, it was looking like dehydration was starting. My skin was getting that pinched look.  That was when we decided that a trip to the ER may be a good idea. Our local ER took very good care of me, did blood work, EKG, nose swab for flu (negative), determined that is was an inner ear inflammation (Labyrinthitis) caused by who knows what. The main thing was to treat the symptoms. First a shot in the butt of Valium to control dizziness, then an IV for lost fluids. Tried a pill for nausea, but I thew it right up. So that was another shot, but into the IV. We were there quite some time, with waiting for labs etc. They wanted to do an MRI initially, but because of my CI decided that a CT scan would be OK. Then we were waiting to speak to the radiologists about the pros & cons of needing a CT Scan. Since there were no symptoms of stroke or brain trauma, decided not to. So, finally got home about 9 PM. Missed the Super Bowl, but hey – go Packers!

On Mon morning, we got in touch with my ENT who agreed that is sounded like Labyrinthitis, and to treat the symptoms. He of course wanted to know how my hearing was. Thank goodness there is no change in either ear. I don’t think I lost any hearing. I got in to see my GP, who agreed with everything and gave me another followup appointment for this Friday.

So, as of today – Wednesday I am  feeling better. No more vomiting and reduced vertigo. I have a new arsenal of drugs for all the symptoms, but mostly took the mildest anti dizzy stuff. I don’t want the Valium unless it gets bad again. I don’t do well with heavy-duty stuff. I feel weak, woozy, and uncoordinated, but the worst is definitely over.

Now, I have to deal with work issues such as going from using my own sick days to crossing over to short-term disability after 6 days. I’m hoping to be back Tues, but, we’ll see. I have to get stronger first … I certainly have a new empathy for all who have had these symptoms. It totally sucks, and it was all I could do during the worst of it to just hold on and not fall off a cliff.

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Twas the week after Christmas…

And, I have once again neglected this poor little blog. Well, what can I say. Been really busy at work and home, holidays are a crazy time, not nearly as relaxing and reflective as I would like. But here we are, almost at the New Year. I am so full of optimism for 2011! A new year of new sounds, sounds that will become more “natural” more dimensional, fuller and richer. A year of better communications for me with friends, family and co-workers. I’m definitely a Glass half Full kinda girl.

My hearing progress with my new year has been slow and steady. I’m working on listening to Bruce on the cell phone. Still seems robotic and not real clear, but it is improving. Especially when I think about my first sounds being Beeps! I hear Bruce’s voice and words as he talks to me. I remind him to slow down so that I can try to keep up. The T-Mic seems to do what it is supposed to do – and that is to use the ear’s structure to capture natural sound and bring it in. Music is still not as good as I hope it will be.

My next appointment is in Feb – wish it was sooner! My audie likes to go by the recommended settings for CI’s. So, my IDR is 55 for the main setting. I’d like to at least try higher, also like to go to 100% T-Mic. She said she’d do that later, when I have more experience as a CI user. Some of my HJ buddies have pretty high settings, with mixed reviews. Just depends on what works for each individual, apparently. And, I remind myself that I have only been “Turned On” for 4 months.

The next few weeks will be busy, but I will try to be a better blogger! Perhaps that will be a New Year Resolution.

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Do I hear what I think I can? Or, not hear what I think I can’t?

Well, once again I have let a lot of time slip by without posting here. Hey! I’ve been really busy! One extended weekend trip to Georgia – where Bruce ran in a 12 mile trail run (Ft Mountain State Park, near Elijay) It was great! Another extended weekender to NC – where we did a lot of hiking and touring around the Chimney Rock area. And last, a family wedding in Knoxville, TN – which included a side trip through Smokey Mountain National Park. Then, right after our return, we had guests – our friends T & C from WA visited us. We always have a great time with them, and this was no exception. It’s an excuse to play tourist in our own town! Whew! Busy – but in a good way.

People continue to ask how my hearing is progressing. Some people ask me directly, or, they ask Bruce in private. And, the long anticipated answer is that I’m improving! Frustratingly slow, but steady. It has certainly not been a matter of flipping a switch, or suddenly going from darkness to light. More like a long process filled with large and small moments of new sounds. Hearing the birds still blows me away!

I had an appointment for programming today. My audi is very happy with the newest test scores, and so am I! All areas are improved… first tested is the “Press the button when you hear the beep”, next is the repeat the sentence in a quiet mode… followed by sentence repeats with static noise introduced. And last is my most difficult one – single syllable word repeats. My test scores from last appointment one month ago compared to today’s scores were:     Sentences in quiet – last month 62%, today   79%                                            Sentences with noise – last month 35%, today 60%  

Single syllable words – last month  32% , today 62%   

All pretty good! My general perception has been that I am improving, but – that I don’t have as much clarity as I hoped for. When I explained that voices have evolved from the cartoonish and robotic Donald Duck sounds to more of a Darth Vader on helium type voice, she said that eventually my brain will just accept that as “normal”. Bruce pointed out that for so long, my expectations in certain situations were that I would not be able to hear. So, losing my focus, or perhaps not paying strict attention to things (figuring that I wouldn’t hear anyway) was a habit. Now with my new ear, is my old habit still somewhat in place?  If I expect to not understand something, will I not understand it? If I raise the bar and expect to have greater clarity, better speech understanding and improved overall communication — will I? Hmm-m-m. Seems like it’s worth getting rid of old habits. As always, I’m still working on this journey… it’s still a work in process… and, I’m enjoying the ride!

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A work in progress…

Well, what can I say here? I wish I could post that I had a total breakthrough and that speech and word clarity has all of a sudden just miraculously become crystal clear…. but, alas, that is not the case. I’m still struggling, still hearing Donald along with a chorus of Alvin & the Chipmunks.

To keep my perspective, I’ve gotten used to, and even a bit complacent about some of the sounds I haven’t heard for so long… turn signals and microwave beeps are now almost passe! I do love hearing the birdsong while walking outside. Bruce and I took a short trip to the Blue Ridge last week, and enjoyed several hikes in different areas…. all were made even more enjoyable by the sounds of birds in the trees overhead.

I have practiced on the CLIX exercises a couple of times. I find it hard to just listen with my CI ear, and to try to plug up my right ear. I felt that having sounds come in only through the left side would give me a more accurate and meaningful practice session. Some sound is coming through the right side, even with an ear plug.
Things at work have been especially stressful, I feel pretty much out of the loop much of the time, and rely on my co-workers to keep me up to date on what’s happening.
I’m still working on it, my new ear is a miracle which is not yet fully tuned in.

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Do I hear what I can hear?

I had my third appointment with Abby – my audie – today, and she is quite pleased with my progress and test scores, although my perception is still that I don’t have speech clarity. It’s so strange! My high and mid freq tone testing is where it should be (according to Abby), my word scores were at 62% – which, according to Abby is just with the CI, not my right ear. That puzzled me, since I was seated in front of a speaker, with sounds coming in both ears… but her testing of my right ear alone showed her that I had almost no speech clarity with just my unaided right ear, no lip-reading, and without using my left ear CI. She was really happy, and said not to be so hard on myself, and to keep at it. So, I am! It’s a much higher score for speech than I’ve had in I don’t even know how many years! So – Yay! 

She also said to start using my right HA whenever I felt like it. I put it on for the first time since activation today – the sounds seem so flat and low-pitched! Very strange to me after getting used to CI sounds in my left ear… I’m hoping my poor brain can assimilate the very different right and left sounds and get me to better clarity. Patience! It will come eventually. So, really, it was quite an encouraging appointment!

She also programmed the CI to 3 settings for background noise. First setting is for normal sounds, little or no background noise. Second program is to reduce a moderate amount of noise and be better able to hear conversation. The third program is for really noisy situations, to suppress more noise while allowing speech to come in. After the appointment we went to Basil’s on King Street for a really great Thai lunch (Yum!) I was able to test all three settings, and I can really tell a difference. We strolled around Charleston for another couple of hours before heading home. Now, I won’t see her again for 2 months.  She will do more testing, and see how to improve any programming then.

And to make a good day even better, she also gave me my new color caps in AB”S “Techno Colors” – how very cool! Color accessories for my new ear is so much fun! Almost like shoe shopping! Well, let’s not get carried away… but it is pretty nice to be able to change colors.

I do feel relieved after seeing her and getting my test scores. It’s so strange that my perception is still Donald Duck leading a pack of chipmunks – just squeaky warbling sounds, without distinction of words. But the scores proved otherwise! So, what am I really hearing? A lot, apparently!

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This is for the birds!

One of the sounds I have been longing to hear for a very long time is bird song. And it finally happened! I can actually hear the chirping of birds at our back yard feeder – and, they are very noisy critters. The interaction and communication between the different birds at the feeder has always been a joy to watch – but to finally hear them is so special to me.

Bruce and I went for a walk in the woods this morning at Givhans Ferry State Park – lots of chirps and twitter sounds. Unfortunately we didn’t spot any birds, just heard them. We did, however see a Copperhead snake on the trail!

Still waiting for spoken words to come in more clearly… a work in progress!

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Turn it UP!

My second session with Abby the Audie was today… mainly just testing and volume adjustments. She is pleased with my progress and said that I am pretty much on target for being two weeks post initial stim. So, my frustration at not being able to understand words or speech is a bit premature. The plan is to just continue to get my brain used to the high freq stimulation. Even so, it is a bit frustrating.

Next appointment is in two weeks, when she will do some actual programming. And, hopefully by then, my brain will be awakening from it’s 30 year high-freq slumber. Wake up already!

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Things that go Beep

I’m now 2 weeks after the initial activation… and, the little beeps have slowly evolved to Donald Duck like sounds. Not quacking, but a cartoonish sound that’s hard to understand. The words have not yet become clear to me. I also hear 2 very different sounds from my 2 ears. My right non-CI ear, without a HA, has low, muffled vowelly sounds. My left CI ear has the higher, louder, Donald Duck sounds. Kind of like an echo, but simultaneous. Hard to describe, harder to listen to.  My own voice is quite loud (since my mouth is closest to the mic on the CI).

 I have at times put an ear plug into my right ear to be able to focus more on the CI sounds. Seems to help me practice, but it is very difficult to understand much of anything. I have exercises that I do on the AB site. They are multiple choice vocabulary words at different levels of difficulty. I can guess at some, but not very many! Bruce has helped me by just letting me listen without looking at the choices. Very hard to do! Also tiring and frustrating. I have a lot of work to do here!

The 3 programs initially set by the audi are just volume increases. I’m now using the loudest setting, as instructed; and it seems too loud at times. So, without changing the program, I just lower the volume. Background noise is a universal problem for all CI and HA users. Car and road noise while driving is loud and annoying, AC and the fans at work are also loud and annoying, likewise rustling paper and plastics bags. So, until I have further programming and clarity, I’m just trying to re-train my poor brain to get used to all this!

My new sounds so far are all the things that go beep that I have not heard before … like the microwave telling me that my food is ready, the copy machine and my scanner at work, my car key clicker, home security alarm – – and, today for the first time, my turn signal. That was at a stop with no other distracting sound. Of course I always knew that these things made noises, and I probably did hear them at some way distant point. But, here they are again in my new ear!

My ear has been sore after wearing the CI for several hours. It’s a lot heavier that my old HA, and rests in a different position on my already tender ear. I was using small circle band-aids for a while, but not anymore. Guess I just have to toughen my ear up a bit more. One tip I had from my buddies on HJ, is to use wig tape to hold the weight up a bit more securely.

I got a haircut yesterday for the first time post-op… Kate was amazed at the size of my lump, scars, the magnet, the color cap accessories, etc. Most people are quite interested in the whole thing, and those people with whom I have shared my experiences had no prior knowledge of how a CI works or looks. So, guess my new role is bringing knowledge and attention to the wonderful world of Cochlear Implants. Hey – someone has to!

Next up for me is my first mapping – or, programming – which is Monday. I’m not sure what to expect, perhaps just small adjustments while we wait for my brain to get used to all the new sounds, and make sense of it. The hearing nerve in my brain for high pitched sounds has been slumbering for 30 freakin’ years! Wake up, already!

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