Saturday, May 31, 2008

OK, so....

...I got the CT scan results Thursday afternoon. I had to absorb the results a bit before I posted them, because I was really shocked...the implant, according to the doctor's office, "looks fine" (message left on my voice mail). I was not in a position to have a good meltdown Thursday because I was with a lot of people when the call came...but Friday morning I made up for it. I had a royal fit and stayed in bed and sulked and cried and stormed and pouted for the entire morning. I was finally set firmly in place by a dear friend who's also a CI user that reminded me that I hear better with the one I have than some people do with two, and that a meltdown at this stage wasn't really warranted...that I still have the opportunity to talk with the surgeon to see if I have any options for dealing with the sensation in my ear and the sensations I feel with my processor. I have decided for now that I'm going to relax about this for a few days. I'm leaving for the HLAA convention in Reno/Lake Tahoe in a week and a half (Hooray!) and going to California for an Advanced Bionics production facility tour after that. I already had an appointment with Dr. Haynes the following week for a six-month post-op checkup (I almost wrote "postpartum", ha!) and I'll talk to him then and see what he says. I still can't shake the feeling that there's something wrong...it just doesn't feel right...but I can't do anything about it today, and I want to enjoy the next few days, not spend them all stressed out, so for now the whole project is on hold unless something comes up that necessitates checking into it sooner.
If it turns out that the implant is perfect in every way and perfectly positioned, that might point back to our original conclusion...that I was deafened too early and too long ago in that ear to get much benefit from a CI. Before I had the surgery, we went in the sound room and did all the standard tests and I felt the sounds then, rather than hearing them. I don't know what kind of wiring is in my head to produce that kind of sensation, but it's possible that the CI just can't overcome that. However, I still haven't had it explained to me why I feel something inside my ear. It feels like there is literally something in there, poking my eardrum, some days so bad that I feel it's going to come through. Some days it's just a mild annoyance and other days it's painful. And that's what I want to get to the bottom of...more than anything.
What I have with my second CI is more than I ever hoped for. If I have any complaints at all, it's that when I need a new map, like now, my music suffers a bit...but that's it. I am talking on the phone more easily and with far fewer errors now than ever before, and I hear conversations going on all around me...which I haven't ever heard before. The kids can sit next to me on the bed and talk and I don't have to watch their faces...I can listen to them all at once without having to turn to figure out who's talking and which lips to look at. Thursday I talked to two receptionists and the office manager at Vanderbilt (I talked to her twice) in four separate phone calls. I talked to a travel agent, my sister-in-law, and Will on the cell phone. When I talked to Will I was driving down the road in the car in traffic...and when I talked to the receptionist at the doc's office the kids were playing Guitar Hero in the next bedroom. I did have to ask her to repeat something once but that was about it. If I never have two ears working together well, I have one GREAT ear...and I should be profoundly grateful for that instead of whining over what I don't have. Pity party over...for now :).
Hubby decided that I needed to get some clothes on and get out of the house so last night he took me to Olive Garden for dinner and then we went to see the new Indiana Jones movie. Dinner was excellent and the movie was pretty good, although I have to admit that I don't do movies really well yet...all the sound effects make understanding voices difficult. However, I got enough to keep up pretty well and of course it was wonderful seeing Indy again (Harrison Ford never disappoints in any movie he's in, quite frankly!).
OK...enough...it's been a tiring week and it's late and I'm off to bed. I hope you all have an awesome weekend!! :)

Wednesday, May 28, 2008

Heads up:

I've enabled comment moderation on my blog. If you don't "flippin' care" as one commenter so eloquently put it, about what's going on in my head, that's fine...don't bother visiting. I won't post any comments that are in the least inflammatory, or that I think are suspect. I have five children and I don't let them say rude things to start fusses in my presence. I tell them that if they don't have anything kind to say, to just keep their mouths shut. And if you don't like my choices, or if you don't care, that's totally OK with me, but I won't allow any kind of squabbling on my blog. Some other CI bloggers...Abbie, Jodi, and Val, to name a few...put up with all manner of bickering on their blogs...Jodi comes out swinging...You go, girl!...but that's just not my style. Any comments I don't like won't go any farther than my own inbox. I'm gonna hit the delete button, just like you're entitled to when you see that I've got a new post up on DeafRead...skip on over it, folks, you won't hurt my feelings. If I don't know you, and can't decide how your comment's meant, I might contact you before I take any action just to make sure, OK?
I have been cleaning up comments all day today, and I'm done with it. Thanks for being so understanding. If you're a regular commenter, I hope you'll still leave your comments...it will take them a little longer to come through, but you know I want to hear from you! :)
I haven't heard from the CT today. The audiologist said that maybe I'd hear from the doc this afternoon...but I didn't. Bummer! I really wanted to know! So, keeping my fingers crossed that I'll hear something tomorrow. I'll post when I know something, because I know some of you are as anxious to hear as I am! :)
Later....love y'all! :)

Tuesday, May 27, 2008

Spent the day in Nashville.....

My appointment wasn't until 11, but I got to Nashville at 9 AM...to meet someone very special!
 

Valerie and I have been online buddies since probably August or so of last year (that's a guess). My audiologist e-mailed me and asked if she could get us together by e-mail and I was all over that idea. We e-mailed back and forth for a while and then became blog buddies (Valerie blogs at Tales from a CI Gal). We have been talking about getting together for several months now but just never seemed to be able to make it happen. I have really wanted to meet her, though...she's one of my heroes. Back when BlueCross BlueShield of TN was only covering single implants, she decided that she wanted to get two at once, and took on the mighty BigBlue to do it! It took Valerie and Let Them Hear SEVEN appeals before BlueCross changed their policy to cover bilateral implants in adults over 12 (their previous policy did cover bilaterals in children). By the time I came along, I only had to appeal once before their policy change took effect. I might have been able to wrangle a second implant on appeal since my first one didn't work well, but more than likely if Valerie hadn't done all the legwork, I would have had to wait a lot longer than I did. THANK YOU, Valerie!!
We visited for about two hours, and people, Val is a sweetheart. We are hoping to get together again soon at the Nashville HLAA meetings after the convention...I can't wait!
I made it to my appointment right on time and Susan and the Advanced Bionics rep, Andy Perkins, were there waiting on me. Susan did a tympanogram while Andy set up his stuff...checking to see if that pressure behind my ear might be fluid, but, nope...tympanogram was perfect. Andy hooked me up to his computer and started some tests. I didn't really like that part...as the sounds the test produced were really uncomfortable. I told Andy that I heard something that sounded like a woodpecker and it felt like it was pecking a hole in my head! After that test he did a couple more where I didn't hear any sounds at all, and then he said that it seemed like the internal device was in good shape, no problems. He and Susan then manned the computer and worked on programming for about half an hour or so, trying to see if they could eliminate the vibrations. They turned on these electrodes and off those and then tried different combinations. They adjusted pulse widths and I don't know what all (unfortunately, my lipreading skills have largely gone to pot since I hear so well now, so I didn't understand a lot of the pow-wow that was going on in front of me). After a completely futile effort, we gave up so I could get to my CT scan on time.
After waiting for about 25 minutes, I had the scan...in and out in about five minutes. When I was leaving I was putting my CI back on and the radiologist asked, "What's that?" I told him and he said, "I've never seen one of those before...heard of them, but never seen one". Told him that the innards of the thing was in there on his computer if he wanted to go look :). I asked nicely if he'd give me a hint what he saw ("no") and then asked if he'd let me look at it, as if I had any idea what I was looking at ("no"). Didn't hurt to ask ;).
So now we wait for the results. Hopefully we'll hear something sometime in the next day or so. I'd be lying if I said I didn't care if they found anything or not...honestly, I hope they do. I'd love to think that it could be replaced...mainly for comfort reasons. If you can believe this, hearing with that ear is something that I wouldn't mind having, but can do without...I've done without for more than 30 years. If I could have that implant replaced and be able to hear as well with that ear as I do with the second one, it would be a dream come true, but I am seriously not yet holding my breath. Surgical errors and electrode migrations are fairly rare, and what are the chances? Then again, I'm all about long odds...I lost nearly all my hearing nearly instantly as a four year old (back then it was so rare in small children that the doctors in Tennessee were totally baffled) and I won a car from Ford Motor COmpany from a SUPER BOWL sweepstakes two years ago. Now THOSE are long odds. I have a shot at this...we'll see.
Headed to bed...as soon as I have news I'll share it. Say a prayer for me! :)
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Monday, May 19, 2008

A whirlwind weekend!

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It's been just wild here! Thursday afternoon I drove down to Nashville a little early and picked up a new CD from the Christian bookstore then walked around the mall for a little while before meeting Laurie at the hotel around 5:30. We visited for a few minutes then decided to walk into town and eat dinner at the Melting Pot. I had never been before and when Laurie suggested it, I was all over that idea! It was SO yummy!! I told hubby that we are SO going to have to go there soon...I think he would really like it. It was a little dark and dungeon-like down there (ha!) and I worried that Laurie and I might have trouble communicating but we did fine...I could hear her with no problem at all. We were there a couple of hours...it's definitely not fast food...and it was so much fun catching up! We got back to the hotel right at 9:00...just in time for the HearingJourney Thursday night chat (every Thursday night at 9 central, y'all!). That's a fairly new thing...it's been going on for several weeks, and it's a lot of fun. We visited with them for a while and then we talked a bit more...not too late, though, because we were both tired! We found out right when we were going to sleep that the TV didn't work...argh...I am totally hooked on having a TV to fall asleep with...but I must have been really, really tired because I declined to call up the front desk to get it fixed...and I managed to fall asleep without it...and fast!
Laurie's meeting was at 9:30 so we got up and got moving pretty early and were at the Nashville Public Library, Starbucks in hand, right on time. The meeting was very interesting and informative....I hadn't ever sat in on one of them and it was interesting to see what was happening across Tennessee with the various deaf/hard of hearing agencies. The panel is made up of various representatives of deaf/hard of hearing cultures: the culturally Deaf, hard-of-hearing, CI wearers, Black Deaf, interpreters, etc. and they all discuss things that are important to them and ways to improve things that aren't up to par, etc. It went on until around noon and for the most part was just really fascinating. They wanted a group shot afterwards but there wasn't a really good camera available...guess what, I had mine, so I volunteered my photo services :). I'll let Laurie post what she's got and tell her take on it when she gets home (she's off on yet another adventure!)
The meeting took place in the Nashville library...I didn't know this until I got there, but it was the 30th anniversary of both the Governor's Council and the Nashville Library Services for the Deaf and Hard of Hearing. Sandy Cohen, who is the librarian in charge of Deaf and Hard of Hearing services, offered to take us up and show us around after the meeting...and I was just blown away. Any kind of book, magazine, or DVD that you could possibly want that relates to deafness/hearing loss can be checked out at the Nashville library free of charge to Tennessee residents...and they have the largest collection in the nation of these materials. They also have a huge display area of assorted video phones and assistive listening devices (ALD's) and if someone comes in that needs to use these services, they are available. I had been talking to several of the CI babies' moms about the Signing Time DVDs and they had those prominently displayed...I just had to have 'em! I brought home three of them and the little girls have been watching up a storm. We have the first three in the series and so far they've got the first one memorized and are working on the second one! AWESOME!! If you have time, and especially if you're a Tennessee resident...click on the link above and see all the amazing resources they have. If you live close by...a visit would be WELL worth the time!!! We didn't leave there until around 2...and I could have stayed longer, but we had to head back home!
Got home around 3 and made dinner and started on desserts for a family reunion we went to on Saturday. Saturday I woke up with a killer headache (blech) but dosed myself liberally with ibuprofen and was good to go by lunchtime.
Yesterday in between church services I just rested, and today I had to clean out the deep freezer....sad story there...someone left the door open on the thing and it was just not pretty. The rest of this week is filled with end of school activities (the girls get out on Wednesday, and Will's having a couple of buddies over later in the week...yee-haw). I also downloaded a few songs for Will off iTunes today...and got my own copy of David Cook singing Eleanor Rigby....woo-hoo! :) Gonna get on Amazon in a bit and order Guitar Hero 3 for the kids...they want it for their Wii. I might have to play this one with them!!!!
I told y'all wrong in my previous post...my appointment next week isn't on Tuesday the 26th....no such day :). Rather, it's on Tuesday the 27th. As of now, I have an appointment for a head CT immediately after my appointment with the AB rep (Abbie, this guy's name is Andy...never heard of him). However, Susan is trying to get me in for the CT earlier if possible so that we can review it at that appointment...I'm kinda on standby for the next few days...keeping my fingers crossed! We won't have time to map Thing 2 this time...will have to wait until June 9th, after all, for that. That's OK, though...I just noticed last night when I took the processor off that I had it on one of my alternate programs...I don't even remember what it was...no telling how long it's been on the wrong program like that. I switched it back to Program 1 and my beloved Fidelity 120 programming and all was right in my world again...it sounded better than it had in a while (sounds like something I'd do, right?) Ah well! :)
As I've said before...the results aren't the most important thing yet...if I have to have more surgery, we'll cross that bridge when we come to it...and the results will be what they are. At this very moment, I'm just more focused on answers...why things aren't right...and what's causing it. I'll deal with the results when we get to them! :)
OK...off to bed here....I'll let you folks know when I know more!!! Have a great week, y'all :)

Wednesday, May 14, 2008

It's a date :)

If everything goes as planned, I'll be meeting with both my audiologist and an Advanced Bionics area rep on Tuesday, May 26th. I'd go tomorrow if they asked me to, but I'm thrilled that they made it happen within just a couple of weeks. We'll map Thing 2 (it's time for a new map...my next appointment was June 9, so we're just moving it up a bit) and see if anything can be done programming-wise for Thing 1. I personally don't think there's much we can do...Susan is an excellent audiologist as far as programming goes, and she has tried and tried to make that thing work...but programming AB implants is what the area reps do best, so if there's anything that can be done, they'll do it. Still don't have a date for the head CT yet...crossing my fingers that it will be soon! :)
And I am spending part of the weekend with Laurie...you know you're jealous! :) I can't wait! :)

Monday, May 12, 2008

In just one month....

...I'll be at the HLAA National convention! I can hardly wait! :) I went to my monthly HLAA meeting Saturday...it was the first time I'd gotten to go to a meeting since DECEMBER because of work! It was so good to see them all again...there were a few new faces (hi, Clifton and Sally!) and the familiar ones were a sight for sore eyes :)! We had a guest speaker from the Tennessee Emergency Management Association and we assembled emergency preparedness kits. We had a great potluck with some delicious barbecue...and afterwards we went out for Mexican food. I could hardly eat...still stuffed from lunch...and got home and felt ill from all the food! About 15 members of the Nashville group are going to the national convention...it was fun saying goodbye, reminding each other that the next time we see each other will be at the airport!
I woke up yesterday morning to a tray with french toast and coffee....ah! After church we went to my mom's for lunch, and then after church last night we went to a local Mexican restaurant. I was stuffed to the teeth by this point so I hesitated to get anything else to eat...hubby and I shared something. THEN the waiter walked around our table and told all the mothers that we got free desserts in honor of Mother's Day....oy! I ordered a fried ice cream and enjoyed about three big bites of it before passing it off to the kids, who polished it off. I was SERIOUSLY ill last night after two days of pigging out!!
OK...in answer to a comment that was made...no, I don't believe that my first CI was faulty. Almost immediately after the surgery, I noticed the discomfort...a feeling of fullness like having a lot of fluid in the ear (to the point that, probably two months after the surgery, I remarked to my husband that if it never worked any better, I wished they'd take it back out). As far as I know, defective internal implants aren't uncomfortable inside the ear...the location's just not right.
Also, with device failures, there's a pretty predictable pattern, regardless of brand: device is implanted, usually works fine for a time, then starts making some sort of horrible noises or cutting in and out repeatedly. Eventually, most of them quit working entirely. That has not been the case with this one....it has worked from Day One, and has even gotten a little better with time. When I was first implanted I heard NO SOUNDS AT ALL...just felt the vibrations....and now, a year and a half later, I can hear a lot of sounds. At activation I had zero comprehension...and a year later it was up to around 16%. However, the vibrations had not gotten any better at all. Not worse, mind you, but not any better, either. I had ALWAYS had trouble dealing with that sensation, and when I got my second CI, and could hear with it, with no vibrations at all, I pretty much just ditched the uncomfortable first one...WHY put myself through that? I had a new ear that worked...while I was sorry that they didn't both work, I wasn't going to torture myself trying to see if it would get better.
I believed as early as just a few months after activation that there was a problem. I mentioned it to my surgeon and my audiologist, but couldn't get anyone really excited about it. I talked to Laurie about it at length and she told me about another CI blogger, Susan in British Columbia, whose blog is here. Susan's story sounded VERY similar, and it made me even more interested in having mine checked out. I mentioned it to the surgeon and audiologist again, but still without a lot of luck. I'm not a pushy person, so I sat down and waited a while longer. When I had my second CI surgery, though, I was almost convinced: the two ears not only sounded and behaved dramatically differently...they physically feel different...inside and out. At this point I actually called in another audiologist...my local audiologist...but she said that her hands were tied as far as my ears were concerned, as she's not allowed to mess with CIs.
It's possible that I may just have fluid behind that ear, and that the reason that I feel sensations instead of just hearing is that I was deaf for too long before being implanted....but, believe it or not, I haven't even had a tympanogram to have that checked. And it's been a year and a half!
I have had some help in the past few days...and my audiologist e-mailed me the other day to discuss where we're going from here. An Advanced Bionics area rep will be coming up my way to see if he can't program it first to see if I can hear without feeling any sensations. AND the audie and surgeon are supposed to be working together to see if they can't get me an appointment for a head CT....soon...to check the position of the implant! I don't have a date for any of this yet...but as far as I'm concerned....just having cooperation and involvement from the doctors is incredible...I have been waiting to be right where I am now for close to a year.
If, after all this, there's nothing wrong...if I've just been over-reacting....at least I'll know that so I can move forward instead of wondering for the rest of my life if there's a fixable problem. Unless I give it my best go, though, I'll always wonder "what if". No matter what the outcome, I need to know that I've done all I can do :).
Thanks for all the encouragement both in comments and private e-mails...they mean more than you know!!
House is on....later, y'all! :)

Sunday, May 4, 2008

Long time no post! :)

I'm so far behind in all things computer-related...I was working so many hours on the job that when I got home all I wanted to do was eat and sleep. Friday was my last day on the job, though...and I'm looking forward to catching up. I am such a blog addict that it's been hard for me not being able to update...I have been somewhat better about updating on the family blog, but this one has suffered!
I'm about to need a new map...I always wondered how I'd know, but my high frequencies are starting to disappear and things are starting to sound slightly more muffled again. I am trying to hold off a couple more weeks...the Reno convention is in another month and I want a fresh, good map as close to then as possible. Comprehension is starting to slide just a bit...I noticed it mostly at work, but since I knew I'd be quitting soon I didn't panic too much. It's still good at home and in small groups, but in a lot of background noise and in restaurants I can tell a difference. I'm not worried, though...tweaking those frequencies will fix everything! :)
I heard something a couple of weeks ago that I'd never heard before...one of these.
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I actually had no idea they made a sound, although, as my friend BigBear says, almost everything makes a sound...I've just never heard most of them. I was sitting on the patio sunning myself like a lizard on a rock and kept hearing this faint whirring sound. It was actually loud enough to get my attention (I had a magazine going), so I turned to figure out the source of the sound. There were quite a few of them falling all around me, and at first I was like, no way am I hearing THOSE, and then one fell just beside me, and I heard it whir and then heard a tiny sound as it hit the patio. My mouth was seriously hanging open...it was the first time ever to hear something so soft. Utter amazement!
Yesterday I was in the front of the house and heard something that I couldn't place but knew that it was outside. I asked Katie what it was, and about the time she told me I recognized it as the alarm on the car...apparently, we'd hit the "panic button" on the keyless remote. I guess it was fairly loud but Katie said she could barely hear it so I patted myself on the back for picking up that sound :)!
I've been thinking a lot lately about my first implant, and several of you have asked how I'm doing with it, and I thought I'd fill you in on what's going on with it...just a bit. If you're a long time reader of this blog, you know that I've struggled with Thing 1 quite a bit. It wasn't "right" from the beginning...while I did hear some sounds, I also feel sensations with every sound, and those never have become even close to being tolerable. In addition to the bad sound, I also have to deal with physical discomfort. When I lay on that ear, I feel a sensation of pressure on my eardrum, and if I touch that ear anywhere at all, it feels like something from behind is pushing my eardrum outward. I can't wear headphones or put an iPod earbud in that ear...because the air pressure is painful. Water in that ear is uncomfortable.
From the very beginning, I decided that the reason I wasn't hearing well was because I had been deaf for way too long...and accepted that. Having never had a CI before, I accepted the pain and pressure in my ear as just being part of having a CI, and even chalked it up to my being a little fussy about sensory things (the story "The Princess and the Pea" has my name written all over it). It wasn't until I had my second CI that I realized that the two were vastly different....in every way. The same surgeon did them both, and they are positioned in exactly the same place....from the outside, they look perfect. However, I have been hearing extraordinarily well with the second one...with no sensations at all...and the feeling of pressure inside my ear is simply not there...my second CI ear feels exactly as it did before the surgery...a plain old ear.
I have asked my surgeon to look into my first CI, and have talked to my audiologist about it...but to be perfectly honest, have gotten nowhere with that. I'm not a pushy person, and haven't pushed really hard, but admittedly, this approach hasn't gotten me anywhere. I contacted my local hearing aid audiologist to see if she'd take a look and she shot me an e-mail basically saying that she wouldn't touch a CI with a ten-foot pole (can't blame her for that).
So now...there is another approach in the works, which I am not going to go into a lot of detail about here, because I'm not sure it's the right time, but I'm hoping that we can get to the bottom of things soon. I quite frankly think that there was a surgical error...but have no way of knowing for sure without some cooperation from the medical profession. This doesn't change my opinion of my surgeon...in my opinion, he is one of the best...and errors happen occasionally even in the best of circumstances. I may very well be wrong, but I want desperately to know if anything can be done to make my first CI work. When I started this blog, it was with the hope that someday I'd hear with two ears...but so far, that just hasn't been the case. I hope that soon I'll have a little more information to share about that....one way or another...but it may take time.
I'm not discouraged about it...I heard with just one ear for thirty years, and I am overjoyed that I hear as well as I do with the one ear I have now. The fact that I have speech comprehension now that I've NEVER had before, and that I can hear tiny sounds that I didn't even know existed, is a source of thankfulness EVERY SINGLE DAY...I never get over being amazed at what a difference it's made in my life!
A few CI bloggers to visit today: David, over at Life in a Cone of Silence, was activated on Thursday, and has incredible, heartwarming stories to tell (and he'll make you laugh out loud, too). And I am enjoying reading Katie's blog...she had her implant surgery a couple of weeks ago and is waiting for her switch on! Go check 'em out!
OK, enough for now...I have GOT to make a grocery list...we have nothing to eat in this house! I'll try to post more soon....later, y'all! :)