Wednesday, November 15, 2006

Went to Vanderbilt today.......

for my third mapping session. Since I still don't know much about what they do at those things and I am not yet at the point where I can hear well enough to get really involved, all I know is that they reset all my programs again (fine by me). I have one that I like now...it balances really well with my hearing aid, so conversations are finally comfortable. I can't say as how I'm hearing a lot better with it, but it's much more tolerable than my old programs are. Tolerable is good.
I took Katie and Ellie with me and we were going to have lunch out but we got caught in a downpour and I decided against sloshing through the rain to go in anywhere....we just drove around the Chick-Fil-A and got chicken nuggets. By the time we got through eating it had slowed down just a bit so we ran into Old Navy for a few minutes.
We had to hustle and get home so I could pick up Rachel from school. I stopped at the house to trade the Versa for the van, and when I walked in the back door, I was greeted by a semi-comatose Claire laying on the couch, blanket carefully arranged under her head, wet washcloth on her forehead, with her big brother overseeing her from a careful distance (her dad, who works nights and sleeps days, had been awakened by the school calling and went to pick her up). That was not what I wanted to see when I got home. I assessed the damage: no vomiting, but severe stomach ache, a mild fever, and lots and lots and lots of moaning and crying (that's Claire, though, so I wasn't too alarmed). I left her in care of her big brother and sister and her sleeping dad while I did my pickups, then came home and let her sit on my lap and weep into my ear for a while (thankfully, the battery went dead on the CI somewhere in there).
When hubby woke up, he sized up the situation carefully and made the executive decision that since I had to stay home from church with the sick girl, I should go to dinner beforehand with the family while he stayed with her. I have a good, smart man, eh? :) I look forward to Wednesdays so much during the week...a chance to see my family and my church family. It's always encouraging and I always come home feeling like I've been given extra strength and happiness to make it through the rest of the week. After this week's wild start, I was really looking forward to church tonight, but dinner was the next best thing...the food is always great, and it's relaxing and comfortable sitting with the in-laws and just catching up. I came home in a much sunnier mood and Claire was thankfully feeling much improved when I got home.
Finished my English writing assignment....done with the Math homework...now to see if I can improve that Psych test grade....my hubby brought me chocolate last week, so I think I'm going to get me some coffee and have me a Lindt Dark Chocolate Truffle....I know, I know....aren't you jealous of me?
Happy Thursday to y'all..... :)

Monday, October 23, 2006

Mapping Session #2

I went to see Susan today and she reprogrammed my ear. I told her that I am doing much better hearing men's voices, although I can't hear some womens' voices at all. When she reprogrammed the processor, she made some changes that will help with that, I think, so maybe in the next few weeks I'll be able to "hear" womens' voices better. Of course, none of the sounds I hear are clear yet, except the tinkles....those original sounds are now clear as a bell :) She reiterated that I am doing really well and making great progress. The vibrations are starting to settle down a little bit on regular programming. If I turn up the sensitivity they are still overwhelming, but she is pleased with how well my brain is adjusting and is giving me a little more time this time to adjust to my new sounds. I won't go back until November 15th, so I won't have any more news on that front for a while.
I asked her for some advice about how to keep the processor on. It's a bit heavy and it just doesn't want to stay on. I find that if I hold my head just so it stays on but I don't want to go through the rest of my life holding my head just so, not being able to hug people, or jog, or bend over to pick up babies. I am looking into getting a Powerpack battery pack, which will reduce the size and weight of the processor. It will mean that I'll have to wear a wire, so to speak, but it won't cramp my style nearly as much...so it's definitely worth looking into. In the meantime she found me a clip that I think will help hold it on. I knew I'd have to do something last night when I was holding my sweet foster baby at church and she grabbed my face to give me sugar and sent my processor flying into the floor behind my pew. I had to ask the sweet couple behind me to retrieve it for me. Yeah, gonna have to do something.
It wasn't a great day...I have had a lot going on, and the stress has just been building (a lot of schoolwork, a busy weekend, and the added stress that having ears "in stereo" brings). I was going to indulge in a little retail therapy before my mapping session, but managed to back into a light pole with a great deal of force while I was at Target (I'm so thankful there were no cars around!). I thought I was in first gear but I was in reverse (they look similar in the new Versa) and about the time I realized I was in reverse, I whirled around and about that time, hit the pole. Because of my position, I smacked myself solidly on the ear. The processor and the coil with the magnet went their seperate ways...the processor ended up on the front seat floorboard and I finally managed to locate the coil in the back seat. I was horrified that I might have done some serious damage to my ear and was relieved to find out, after assembling the processor again, that it still seemed to be working. After establishing that everything I had was still in proper working order, I got out and surveyed the damage to the car. Ugh :( It's not horrible, but it's my new car......wahhhhh :( I drove to Panera and got online (I always travel with laptop) and tried to relay my hubby and my mom. I finally reached my sister-in-law at work she called my hubby for me (I thought he should know what was going on in case they decided to do any kind of tests on the implant, since it would mean me getting home later). Susan looked it all over and said that everything was more than likely fine. She said that they're implanted in there really good and are made not to move. That was a big relief.
It did make me think ONCE AGAIN *sigh* about getting a Medical Alert bracelet. Since I have metal in my head, I can't have MRIs or be in the same room with an MRI machine. If I were ever in a car accident and lost the processor (*ahem*, like I did today) nobody would know that I had the implant. The problem is that I am not a fan of jewelry. I wear a wedding ring and occasionally will put on a pair of tiny earrings, but that's about it. I sure don't want to wear a dog ugly MedAlert bracelet, or even a necklace. Wonder if paramedics would look for ankle bracelets? I told my hubby half-jokingly that maybe I should have it tattooed on somewhere, but I have no idea if the paramedics would ever see it unless I had it tattooed on my forehead. What's a girl to do??
After I "talked" to Lisa, I went to Davis-Kidd Bookstore. I had a hard time focusing on the books, but did come to myself long enough to remember that there was a Christmas special edition of Paula Deen's magazine, so I went looking for it and treated myself. I considered further medicating myself with some Ben & Jerry's Bananas on the Rum (WHY won't they sell that stuff in the stores?!?!?), but decided that that would be overkill. Maybe next time :)
I didn't get a chance to walk/run today. I have been trying to go out at least every other day, but I haven't had a walk since Saturday. It really does make me feel great to walk for a few minutes. Maybe I need to clean the treadmill off (if I can even find it....)
I'll try to be better about posting just a little something here and there. When I get stressed, I don't like to spread it around, and I've been a little stressed lately. Surely I can find something positive to post here and there, though! I'll try to do better at keeping up :)!

Monday, October 16, 2006

My first mapping session...

went GREAT! :) I wasn't prepared for it to be so great, actually. When I first got there, Susan hooked me up to the computer, and off we went, playing the tones again. I couldn't believe they were the same ones we did last week (I asked her several times if they were the same ones, since they sounded so different!) Last week, all I "heard" was pounding vibrations inside my head. Only a couple of the tones sounded like anything, and they were very low and very robotic, like machinery. This week, none of them were "just" vibrations. They ALL had a sound, and some of them were downright purty :) Susan redid my "strategies" since I had them set too loud last week, and they were nearly intolerable. When she was done, I found a favorite and found to my delight that her voice, while still robotic, had a definite feminine tone to it. We set them at a comfortable sound level...what she asked me to do was to tell her when it was "balanced" with my right ear (basically, when it took over about half of my hearing, it seems like) then she set that for my middle (12 o'clock) level. I was happy to find out on the way home that I could listen to my CDs with it at that level (although they sounded terrible, it didn't hurt my head to listen to them like it did previously). I think what we needed was a chance to sit down and talk over what wasn't right and then try to fix it, and I'm happy with the results.
One major concern that I had was that I still have a lot of vibrations inside my head whenever I "hear" a sound. I've been really worried that I might perhaps be one of the few that just can't use a CI because of the vibrations. They have just really been uncomfortable. I talked to Susan about it and she said that she usually only saw that response in people that had been completely without hearing either all their lives or for many, many years. I asked her if it would get better, and she said that it nearly always went away with a little time. Now I can deal with it. I just needed to know that it would get better.
I am now convinced that I'm headed in the right direction. I have been seriously worried that things just weren't right, but after hearing those tones in my mapping session, I KNOW that my brain's gotten a lot accomplished this week! How incredible! That's all I needed to know...that my brain was working with this implant. Everything else will come in time. I got all the time in the world, now that I can see some results and know that I'm starting to do the "normal" thing (if there is such a thing in this business) and have the same chances as everyone else. I never would have thought it. God is good. I KNOW this.
You wanna know what else? I'm listening to Harry Potter on CD...and I'm not kidding you...it sounds incredible. No, I can't understand the words. But I feel like I'm right there. I feel that if I could turn the sound up, or sharpen it just a bit, I'd be able to hear the whole story. I know part of it is due to today's mapping session, since it didn't sound so hot last week. It's distorted and robotic sounding, but oh, it's almost. How freaky is that? If I could just turn it up without the jackhammers hammering away at my head, perhaps...
I saw a quote on one of the boards that I visited that I liked. Someone asked for permission to steal it, and it was given, so I'm stealing it too. It was:

"I have seen the light at the end of the tunnel, and it's not a train."

In other news, since there IS life beyond cochlear implants, although that's about all I can think of these days:

I bought me a new pair of Nike running shoes today. I tried on six or seven pairs of running shoes and manhandled every pair on the shelf under a hundred dollars before I finally found a pair that fit me comfortably. I may kill myself trying, but I really want to start running. I think that it would be great exercise and it would beat down some of my stress (I just don't handle it really well). I really wanted to give them a road test but the weather was NOT cooperating today. It was about 60 degrees and rainy all day. Maybe tomorrow will be dry and I can try them out then :)
I am getting a break from school...for a couple of days :) I don't have any assignments due until Wednesday, since we're on Fall Break. I am amusing myself with a huge stack of magazines and mail-order catalogs that I'm way behind on, and I finally got a chance to read my new cookbook last night. She also uses a little language that I'm not big on (WHY in a COOKBOOK?) but the recipes look terrific, and some of her stories are side-splitting.
I'm gonna get off here and make a grocery list. When it gets cold, I really don't mind cooking, but since I haven't cooked much lately, the cupboards are looking pitiful. So I see a trip to Wally World in my future...tomorrow! :)
I hope everyone's week is off to a great start! :)

Friday, October 13, 2006

An update!

I've been slow in updating because I've had to think about this thing a bit :) My relationship with my new implant is coming along slowly. I didn't expect it to be love at first sound, but honestly thought that my brain would transition a little more smoothly than it has. I still can't turn the sensitivity up without the jackhammering taking over my head. That gets old really fast. And I have to admit that perhaps I had my sights set a bit high, as I was hoping to be able to distinguish more sounds at this point. HOWEVER...I have a CD that I can play, one that I know well, and can tell which song I am listening to, simply by the way it feels in my head. I consider that a good thing, since many CI users have trouble distinguishing where words begin and end. I shushed Claire this afternoon and could hear myself "shhhhh"ing. I asked her to do it back to me and I could hear her doing it. I went to Wal-Mart yesterday and stuck my hearing aid in my purse just to see what I could hear without it. I ran into a preacher friend that I felt comfortable talking to and was happy to find out that his voice had a tone to it. It was a flat, robotic tone, but I could "hear" it, so that was good. When I dumped a bag of dog food in the cart, I heard it crinkle, and when I threw a bag of Doritoes in, they crinkled too. So we know this: I can hear crinkles, tinks, and taps. Oh, and "shhhhhhh"s. Considering that one week ago I had not heard anything in that ear in over thirty years, it's nothing to sneeze at. I go for a mapping session on Monday, and Susan will reprogram the CI with new "strategies". I think I'm going to get her to turn the sensitivity down, too. I had her turn it up when I was activated because a. I thought I'd get used to it fast, and b. I didn't know how disruptive it would be to have all those vibrations in my head.
Also, it's taken some doing getting used to wearing the thing. Yesterday I knocked it off twice...once onto the tile floor at Walgreens...and was scared to death that I'd broken it. It came with a one-time replacement certificate, but I don't want to replace it the very first week....it's gotta last me a while. My Daddy suggested that perhaps I should wear a hairnet. That man and his brilliant ideas! Since I've never worn anything on this ear (and it's on my left side, which is awkward, since I'm a righty), it takes me a while to get it on, and it makes my ear sore. It has rechargeable batteries, large and small. The large ones last longer but I can only wear the small ones, because the large ones make it too big and heavy and it's all prone to come sliding off faster. I know I can have an ear mold made to keep it on, but that's one of the things I hate about hearing aids, and I don't wanna. It's all going to take a LOT of getting used to. I firmly believe that in the long run I will be so glad I have this implant. However, to say that I'm in love with it would be purely fiction. However, Ive been told that that's the usual reaction to 'em. I don't think anyone falls in love with theirs the first week, except perhaps Ivan (who is about five weeks or so post-activation and doing awesomely!! He is enjoying music already!!). ;)
I'm doing lots of listening exercises....listening to music and to Harry Potter on CD whenever I'm not doing anything important, like schoolwork. The jackhammering effect makes it really hard to concentrate on anything, so I'm glad I have a few days off school for "Fall Break", so I can relax a bit and just take it easy and play with my new ear! :)
Your comments, e-mails, love, prayers, and mentions on your own blogs have meant so much! THANK YOU all! I'm sorry I've taken so long to update, but I like positive updates, and wanted to take a few days to sort out some of my less than positive feelings. I feel that I'm right on course, for ME. I'll get what I get when I get it, and, as my Dad said last night, I already have SO MUCH. I'm a blessed woman! :)

Tuesday, October 10, 2006

Today's emotions are:

Overjoyed. Overwhelmed. Overstimulated. Tired.
Yes, I can hear. GOD IS SO GOOD.
Mind you, it's not very impressive, but I don't particularly care.
When Susan first hooked me up, I didn't feel anything at first, and then it came....whop whop whop whop whop....like the pounding of a migraine headache without the headache. I didn't catch it at first. I was listening for REAL sound, ya know. Then it got more intense...WHOPWHOPWHOP. I told Susan, "I feel a pounding in my head. Is that what I'm supposed to be getting?" I don't really remember what she said, only that I felt reassured that it was OK, and at least somewhat normal. She ran through several electrode pairs that way, and they all felt like that....whop whop whop whop. My head was reeling!
Finally, we came to an electrode set that actually had a little bit of...dare I say it?..sound quality to it!! It sounded a bit like it felt...sort of like a mechanical hum. The one after it was similar...still the heavy pounding in the head, but it, too, had a tone to it. Most of the tones we ran through didn't have a lot of sound to them...they mostly just assaulted my poor brain with sonic booms, but there were several where I felt like I was really "hearing" some sort of sound, no matter how dreadful. I was just overjoyed to have heard something that had a bit of "color" to it...that was all I had dared to hope for for the first day!!
After some doing, we settled on three programs of various sonic booms for my first week's practice set. I was somewhat dismayed when I put my hearing aid back on my "good" ear to find that with my processor on, I can barely hear from my "good" ear anymore. Apparently, my brain is scrambling trying to make sense of the new assaults on it, and is in "one thing at a time" mode.
I had a quick audiogram done, and scored around the 30 decibel level with my vibrating head. Now, if we could just transform these vibrations into sound....baby, I'd be hearing great!!
I experimented with my three programs on the way home, and was starting to feel slightly unsettled that I hadn't "heard" any more, but had faith that it would get better. I took the processor off at Don Pablo's...it was so loud in there that my head felt like it was about to explode, and I wanted to enjoy my lunch (Priorities, ya know) (a funny thing...whenever I took the processor off, or whenever it was totally quiet, which I've discovered is virtually never, I get a "dial tone" sound in my head. WEIRD!!). I made the mistake of putting it back on without first turning the "volume" down, and about dynamited my head apart from the vibrations! I tried to nap in the back seat on the way home, but just couldn't relax enough to do it (not to mention that the kids kept poking at me to see if I was still awake). We finally got home and I decided that I needed a nap. The vibrations are making me tired. I hopped in the bed (and NO, I haven't taken the nap yet...OF COURSE I had to blog first!!) and there were a couple of coat hangers down by the foot of the bed that were cramping my style, so I tossed them and they hit a package of lighbulbs on the bed.
"Tink", they said.
"Tink"?? Isn't that a sound?
Of course, I grabbed the coat hangers, and tinked everything I could find, and yes, everything tinks. And the tinks don't sound exactly alike. Along that line, I started drumming my fingernails on the keyboard of my laptop, and those tink too :) I'm tempted to get me several glasses of water and a spoon and have me a tink festival. My sister-in-law brought my girls home from school and when I was talking to her I realized that my voice has a sound to it. Hers doesn't....yet. The laptop keys click.
I am ecstatic with today's discoveries. I feel like I have gotten exactly what I prayed for....just enough sound that I have hope. My short term goals are: to hopefully be able to manage the vibrations in my brain, and to be able to hear with my hearing aid in my good ear and listen to tinks with my new ear at the same time :) I have another mapping in a week, and who knows what will happen in a week??!?!?
Today has been a great one. The adventure is off to a grand start!!!!!!!! THANK YOU for your prayers!!!

So.....how do you think it went?

What a dreadful picture...but wow, the joy and amazement I was feeling!!!!!!!!! Posted by Picasa

Monday, October 9, 2006

I am...

nervous. Excited. Stressed.
In less than 24 hours, if all goes well, I will hear sounds again in an ear that hasn't heard sounds in thirty-one years. As I've said before, I'm not expecting anything great, but sounds, in this ear that has been dead for years, are monumental...nearly miraculous.
I got my copy of Michael Chorost's Rebuilt in the mail on Saturday. I picked it up and have gotten through the first several chapters. He uses language that I don't use, and that is one of the only things that keeps me from recommending it without reservation. However, on almost every page, especially in the first few chapters, I see myself. He used one illustration that I have to share with you. On page 48, he talks about scheduling events for the days after his activation, and he says: "Entering those events feels strange, like knowing I'm going to show up female instead of male, or Catholic instead of Jewish."
The surgery wasn't scary. It was just surgery. It didn't, on its own, have the power to change my life. I didn't enter into it with any fear or trepidation. I walked into the hospital joyfully and confidently. However, this....is big. I think the reason it's so scary is that it is so unknown. If I could remember hearing in this ear, ever before, I don't think it would be such a big deal. If I had experienced any of this before, it wouldn't be so nerve-wracking. However, I am stepping out now into uncharted waters, and I'm petrified.
I have the strength of several wonderful implant users and parents of users that I've met over the past six months behind me. I have the support of family and friends. I have church family all over the United States praying for me. And I have God, the giver of every good and perfect gift, with me, and this gives me strength and courage.
Keep me in your prayers in the morning, folks. I'm off to birth an ear. My life will never be quite the same again...it will always, from this point on, be measured by "before" and "after" this day.

Thursday, September 28, 2006

Today was a good one :)

*snip*
Today was my checkup with Dr. Haynes. My mother-in-law picked up the kids from school and took them home with her and Dicky drove me to Nashville. We had a great checkup...Dr. Haynes said everything looked good. I 'fessed up to picking the stitches but he was nice enough to not fuss (he's just a really nice guy in general :) ). I told him that I am still dizzy, and he said that some people just had to deal with it a little longer, but that he really thought it would go away in time. I knew going into this that dizziness was one of the side effects and that it was possible that it could last for a while. I still wanted it, and I still want it now, and this is just part of it. All of the other side effects are nearly gone...the numbness in my ear is barely noticeable anymore, and the numbness and salty taste in my mouth are almost completely gone. Having gotten a clean bill of health...it's onward to activation on October 10th! I can't wait!

Good news:

from MedGadget.com :

September 27, 2006


Harmony™ HiResolution® Bionic Ear System

Filed under: ENT

Boston Scientific has announced today's FDA approval of its cochlear implant Harmony™ HiResolution® Bionic Ear System, a device designed for severely deaf patients.

Developed by the Company's Neuromodulation Group, the Harmony System delivers 120 spectral bands, 5 - 10 times more than competing systems, helping to significantly increase hearing potential and quality of life for the severe-to-profoundly deaf.

"The Harmony System represents the next generation of cochlear implant technology," said Jeff Greiner, President of Boston Scientific's Neuromodulation Group. "We have brought together unprecedented advancements in science, design and functionality for the user -- furthering our commitment to restoring hearing and improving quality of life for those living with hearing loss due to permanent inner ear or auditory nerve damage."

Designed to enhance music appreciation and improve hearing in a variety of difficult listening environments, the Harmony System couples revolutionary internal sound processing (with the optional HiRes Fidelity™ 120) with the new Harmony behind-the-ear (BTE) external sound processor. Together, the two key components of the Harmony System are designed to provide significantly enhanced spectral resolution compared to conventional systems for a more natural representation of sound to help improve patient performance...

Cochlear implant users can access soft whispers and loud sounds without adjusting dials or controls with Harmony's CD-quality processing and sophisticated dual-loop automatic gain control, helping users better appreciate music, hear in noisy environments, use the telephone, and hear sounds that are loud and soft.

In addition to the FDA approval, the Harmony HiResolution Bionic Ear System recently received approval from Health Canada and the CE mark in Europe.

According to clinical evaluation results, approximately 80 percent of the subjects reported a strong preference for the Harmony sound processor with HiRes Fidelity 120, most noting that they had improved clarity of speech and/or that environmental sounds were clearer and easier to distinguish.

The HiResolution Bionic Ear System with optional HiRes Fidelity 120 is approved in the U.S. for adults only at this time and for all patients in Canada and Europe. The product is expected to be available in early 2007.


This is good news because? The processor that I'm getting at activation, the Auria, is supposed to be wonderful in its own right, but the folks that have put the Harmony through its paces in the clinical trials can't say enough good about it. I will be able to upgrade to this processor when it's available after Christmas...yahoo! I'm excited! :)

Thursday, September 21, 2006

Thursday update :)

I'm feeling much better physically...not quite so run-down, although I'm still dizzy. There are times during the day when it isn't as bad, then it will flare up and get nasty, so I can't really say it's any better at all, but I still expect it to get better. It's only been a little over a week, I keep reminding myself, and this is all normal. Mom picked me up and drove me to Claire's school yesterday, since it was her 6th birthday (I need to take some pictures, but we haven't had any official celebrations yet...several little ones here and there, but nothing big and party-ish yet). We had lunch with her and then Mom and I went to Wal-Mart (I could walk fine there since I had a cart to act as a walker ;) ). I thought perhaps some Sudafed would help the stuffed-head sensation (it only helps a little), so I picked some up. I also looked around for one of those microbead pillows, but couldn't find one. Mom brought me one of her pillows to try...one of those big foam chiropracter pillows with the big dip in the middle, so I slept on that last night. After a week of sleeping terribly, I CRASHED on that pillow last night! It was WONDERFUL! I could sleep on my implanted side with little or no discomfort...ah! I have to admit that when Mom picked the little girls up from school this morning, I went back to bed...and I slept WAAAAAAAAYY too late....it felt so good to sleep WELL!!
Doug and Lisa came to get the kids and me for church last night, since I'm still not driving, and they brought us home. I feel so much better when I get out and am around people...being home makes me bananas. The wonderful church folks have all been so supportive and interested and I always enjoy being with them!!
When I woke up this morning after sleeping too late, I had some pleasant surprises...my aunt had come by to visit and brought me a Clean Cotton Yankee Candle, and my hubby had brought me a microbead Superman pillow and some Hershey's Special Dark Truffles Nuggets! Talk about feeling SPOILED!! I felt SO bad that I had missed my aunt's visit...I don't get to see her very often, and she has been one of my strongest supporters through all this CI business. Maybe I can make it up to her with a visit once I can drive again!!
Like I said, I'm feeling stronger...not so wiped out, a little more energetic...so today I went in the garage and worked on the hand-me-downs a bit. I think next week will be a little warmer than this one has been, but last night it actually got down in the 40s, and the girls didn't have any long-sleeved shirts in their closets, so I tackled that job more out of necessity than anything else. I still have a lot of work to do in that department...I basically just went through last year's clothes and looked to see if anything still fit (since I never got them properly put away last year). I still have rubbermaid tubs to look in to see if there's anything else I need to get out, then if we're lacking anything, the fun part: shopping to fill in the gaps! :D I did try not to over-do, since I get grumpy when I do, so I allowed my husband to drive us to eat Mexican for dinner instead of attempting to cook or heat up anything. Tomorrow night Katie is having a sleepover, so we will probably order pizza or something, then Saturday is my Grandma's birthday party (Grandma will be 95 tomorrow) and my niece's baby shower (baby Jaydyn is due Dec. 4th)...so I have a full schedule this weekend!
Oh, when I got home from Wal-Mart yesterday, Katie brought out some flowers that our friends Joe and Joy had sent. I have never seen a more beautiful arrangement in all my life. It has about four different colors of roses, hydrangeas, lilies, and I don't know what all else (I'm terribly flower illiterate)...it is the most colorful arrangement I've ever seen. A couple pictures below....perhaps you can help me identify some of the flowers, so we (OK, my husband, not WE) can plant some of them next year. I wish they'd last forever...they're so pretty!
I have felt so good today that I almost feel recovered, honestly. If only the dizziness would stop and the stitches would all fall out (I had to file my fingernails waaaaaaaaaay down tonight because I simply cannot keep my fingers off them)! They are making me batty!
I got a little good news this morning, and I hope I get to share it soon. Just waiting to make sure that what's supposed to happen really does happen! :)
Hope the new blog template is easier to read. The big Advanced Bionics picture below was squashed all over into my links with the other one and it annoyed me. I know I could have made the picture smaller, but I decided to change the template instead. I was bored with the other one ;) I was trying to do the Newsline template on this page but I couldn't make the red line at the top show up. I might try to add some bling to the blog in a few days but for now, this'll do :)
I hope everyone else is having a great week :)!

Tuesday, September 19, 2006

The Nitty Gritty: How They Work (VERY LONG)

I have found over the past few months that most people know very little about cochlear implants, some people have never heard of cochlear implants, and some, like my grandma, thought that I was getting a cochlear transplant, as in organ donation (she's since been properly educated and knows more than a lot of folks now :) ). I've been asked many times over the past few days if I'm hearing yet. It doesn't bother me...it seems only logical that an implant to restore hearing would do just that, and people want to hear the good news, and if I didn't know better, I'd ask too :) But, no, I'm not hearing yet. Here's why:
The very process of being implanted destroys any leftover hearing in the implanted ear. The electrode array being pushed through the cochlea damages the tiny hairlike nerve fibers beyond repair. In my case, since I had enough "good" hearing in my "good" right ear to get some benefit from a hearing aid, Dr. Haynes chose to implant my worse left ear, which hasn't heard a sound in 30+ years, so I am not feeling the loss too keenly here...if all goes as planned, I will actually hear "in stereo" for the first time in years....how incredible would THAT be??
Here is what the internal component of the implant looks like (for the record, there are three major manufacturers; I have chosen to go with Advanced Bionics's HiRes90K Implant):

Advanced Bionics' website says that
A -- Implant
The most powerful implant available using state of the art computer technology to deliver electrical signals to the electrode array.
B -- Electrode Array
The only focusing electrodes for targeting the hearing nerves.

Here is a picture, snitched from Dr. Haynes' website, showing how the internal component is positioned:



And then, finally, there is an outer piece, or a processor, shown thusly:


and Advanced Bionics says:
A -- Headpiece
The smallest and lightest headpiece for transmitting to the implant.
B -- PowerCel
Most convenient and cost effective power option.
C -- Processor Module
Powerful processing technology that runs the same sophisticated sound processing software programs as the pager-style processor.
D --Microphone
The only interchangeable input accessory that captures sound in the ear for normal telephone and headphone use.

In a nutshell, here's how it works:
After the internal component is implanted, there is a healing time, usually between 3-6 weeks, and then the big day comes: ACTIVATION DAY! (By the way, the big day will be October 10th, at 9 AM!) On activation day, my audiologist, Susan Amberg, will hook me up with my new processor (which will be silver like the one above, and flashy ;) ). It will attach to my head by an earhook, which will slip on like a hearing aid, and a magnet, which is the circular thingy attached to the coil, above. The implanted part has a metal component that the magnet will attach to. I don't know every single little detail beyond that, but basically, the processor receives the sound, sends it through the coil, through the magnetic connection, through the electrode array, bypassing all those long-lost hearing nerves, straight to the auditory nerve. On Day One, my bewildered auditory nerve, who up until then will have lived a quiet, peaceful life, will be bombarded with a burst of electrical signals. Predictably, the response will be, "Huh?" Most new users don't report a great first day....the brain simply doesn't know what to do with all the new information it's receiving.
Over the next few days, weeks, months, and perhaps even years, the brain gradually begins to make sense of the signals. Most users report that over time, the sounds gradually become more and more natural. Voices go from sounding like beeps and whistles to actually sounding like voices. Crickets and cicadas become annoying. Music finally takes on musical tones. It's a process...usually a long, slow one, but the process varies tremendously from person to person. I can help the process along by listening, listening, listening. The more practice, the better the result. I think I will order Harry Potter on CD. That's something I think I'd enjoy listening to :)
Since I am now essentially part computer (my husband has taken to lovingly calling me his Bionic Woman), my software will need to be updated, tweaked, and generally maintained over the next few months and years. I will see my audiologist every week at first, then less frequently, and she will customize my software just for me, since I will have my own individual likes and dislikes sound-wise.
Do I hear yet? No....but if the Lord wills it, I will...soon :) The adventure is just beginning, folks!

If you're not dead yet from reading, there are updates below. I might keep this near the top for a few days, though, so the latecomers can read up :)

Monday, September 18, 2006

One week post-op...

I don't photograph well, sorry. I just wanted to show that the facial swelling has gone down, and now you can see that the ear really does stick out! It should get better in a few days, but for now, when I tuck my hair behind my ear, it stays put! It is all part of the swelling, both initernal and external, that will continue to get better over the next few days and weeks! :)
Also....note the CLEAN HAIR!!! Much better, eh? Posted by Picasa

Thursday, September 14, 2006

Details, details...

D'Lee said in her comment that I hadn't mentioned if it hurt or not. I realized I hadn't said much about anything. Here's some brief details:
The surgery started promptly on time at 7:30 on Monday. I woke up in recovery around noon, but as soon as they told me I could go home, I immediately fell asleep again. I woke up again a couple more times, but both times got nauseated and sick, and the Phenergan they gave me would always knock me out again. At one point we managed, in between sleeping and being sick, to get my clothes on (then I fell back asleep). I finally woke up at 3:00, and my husband said, "Don't close your eyes! NURSE! Where's a wheelchair?!?!" (He said it half jokingly, half truthfully, but the truth of the matter was that if they hadn't gotten that chair fast, we would have been there all day.) So we stuffed me in the car and I slept all the way home. The rest of Monday was a blur of sleeping and throwing up.
I woke up Tuesday feeling OK...took my lovely turban off after lunch and was unimpressed to find a big old sticking-out ear, a swollen face and a bruised neck. I continued to take my pain pills during the day, and thankfully, wasn't sick anymore. Tuesday was my best day, except I looked frightful. The little girls came home from school and had a great time being grossed out ("Let me look, Mom! EEEEEEWWWWWWWW!! Let me look again! EEEEEEEEWWWWWWW!", etc., until the novelty wore off). Claire had a parent meeting that night (which I didn't attend) and cried because I wouldn't print her some pictures of my incision to take to show everyone.
Yesterday I woke up all excited that THIS was THE BIG DAY that I could shower and wash that nasty hair!! So around lunchtime Dicky slathered the entire ear, inside and out, with Neosporin, I covered it up with a washcloth, and emerged some ten minutes later feeling human again, with somewhat nicer-looking hair (still greasy around the ear from the Neosporin). The face was still grossly swollen...blech. I got back in bed and about an hour later, felt horrible...not so much pain, although I did have an earache, but horrible pressure and swelling all around my ear, (that horrible pressure you get when you're going up a mountain and your ears need to be popped, except I'm not allowed to pop mine) and bad dizziness. I briefly wondered if the nausea would return as well, but thankfully, it didn't. I fired off a quick e-mail to Joyce asking her if feeling so bad all of a sudden was normal, and she quickly e-mailed me back, setting my mind at ease. It is SO wonderful to have a support system of CI friends to call on when you need a question answered! She said that I would probably feel better today, which, thankfully, is true. I still feel a little dizzy and a little sore, but my face is closer to a normal size today, and the pressure inside my eardrum isn't quite as bad. As long as the dizziness stays down to a dull roar today, I may be able to string together a couple of coherent paragraphs to finish my Psych paper. Hooray!
I don't feel horrible pain so much, although, obviously, I can't lay on it or anything. I feel a bit of soreness, although it comes more from inside than the incision. The incision is starting to itch. I'm not taking pain pills so much for pain as I am to try to regulate when I sleep (last night I just took some ibuprofen and slept fine). The pressure and dizziness have been my major complaints, and some people don't even have that. I do have a fairly common side effect...everything tastes salty. Occasionally some of the nerves in the face can be affected by the swelling, and in my case, my taste buds were affected (this is usually temporary). I also cannot feel the top of my ear (a strange sensation!)
I will now open the floor to questions.... ;)

Wednesday, September 13, 2006

Here's a picture of the incision site. I was so happy that Dr. Haynes didn't shave off a lot of hair...some surgeons shave huge bald spots! Dr. Haynes followed the contour of the ear and went up directly over the ear. He did shave a little strip straight up, but I have the feeling that when I can fix my hair again, it won't be noticeable. Lovely eh?
 Posted by Picasa

Glamour girl!!

I told my husband this morning when I got up that today was definitely shower day. I felt like Medusa when I woke up this morning! Just for laughs, here's a picture. The surgeon told Dicky and my mom that he didn't know why in the world I'd want to wash my hair, since it was cleaner than it would ever be. There's a big difference between "sterile" and "clean" in my book ;)
If you'll notice, the left side of my face is swollen (it actually looks a little worse in real life than in the picture) and the left ear sticks out a bit. I wonder how long it will take for all this swelling to go down?
Anyhow, I've had the shower, and the hair at least looks better, or at least most of it does...to prevent infection, we slathered the incision liberally with Neosporin and covered it all with a washcloth while I washed the surrounding hair. The bit right around the ear is still a bit of a mess :) Posted by Picasa

Tuesday, September 12, 2006

Sunday, September 10, 2006

T-minus 16 hours and counting...

I'm just trying to get through today. I'm so excited I cannot wait! Mother-in-law is watching the kids tonight and Dicky and I are driving to Nashville and staying at a hotel about five minutes from Vanderbilt. I have to be there at 6 AM, so this way, we can sleep in until 5 (if I sleep at all). I can see myself sitting bolt upright in the bed at 3 AM playing cards on the computer :) Surgery is scheduled for 7:30. I don't know yet when my hook-up date will be...the day when I hear my first sounds from my new implant. I am guesstimating in about to to three weeks...basically, whenever the incision heals enough.
This week has been spent in housecleaning and frantically doing schoolwork to get ahead so I won't have to work as much next week. Dicky and I drove the Escape to its new owner in Huntsville, AL yesterday morning. The title FINALLY came in, oh, about Wednesday. TWO MONTHS after we picked it up! Ugh! Our friend Jon Sr. let us borrow Abigail, his Garmin Streetfinder GPS (I am in love, but don't want to pay the money for one) to find the house, and it took us right there. We were going to find somewhere nice to eat on the way home, since it was my 35th birthday (Thanks to everyone that wished me a happy one! BlueCross is buying the present this year!) but I acccidentally pushed "find shortest route" instead of "find fastest route" on Abigail, and we ended up driving through the boondocks all the way home, with nary a nice restaurant in sight. We ended up eating at The Barn in Fayetteville, TN, which was not much to look at, but pretty good eating...$6.50 plus tax apiece for the lunch buffet, drink included, with delicious fried chicken and banana pudding. As soon as we got home we added the finishing touches to the house and then the church kids came for their monthly Bible study. While the kids were studying I worked on my Psych paper. I'm about 2/3 of the way through with it....I'm hoping to get it done tonight, if I can think straight.
I've been promised home cooking by several different people this week, so the family and I will be taken care of. In fact, our friend Connie is ahead of the game, as she brought some Amish Friendship Bread, in four flavors (chocolate, cinnamon, lemon poppyseed, and coconut....nothing "bread" about 'em...this was CAKE) Thursday to build up my strength for the upcoming ordeal (at least I think that's what she was trying to do). She did a fine job. I feel much stronger already. I think the Amish in her reared its head again this weekend because when I got in the van this morning after church I found that we had been gifted with another fresh loaf of bread (this one smells like actual bread...with a little butter, it will be to die for). She's going to gift me right out of my pants if she's not careful...they're already getting tight.
Having said that, I'm considering taking Tallahassee Lassie's advice and having a big bowl of brownies and ice cream tonight before midnight (nothing after). She had a good result, you know, when she had hers, and I want the best possible result with mine.
Keep the prayers coming. God answers them.

Friday, September 1, 2006

It just keeps getting better...

I e-mailed Wendi back Wednesday night, telling her that I would take the October 27th date, but jokingly (well, halfway jokingly, anyhow) commented that I'd do it tomorrow if they had an opening.
We got up yesterday morning, drove to Gatlinburg, TN, unpacked in a gorgeous chalet high up in the hills, and I discovered that there was no Internet. I unplugged the phone, plugged in my phone cable, and got a free Netzero High-Speed (hah!) Dial-Up Internet account. In about half an hour I was reading my e-mails. There was one from Wendi saying that I could have the October 27th date if I wanted it, but that there had been a cancellation....for September 11th...if I wanted it. DO HENS LAY EGGS? DO BIRDS FLY? Of COURSE I wanted it!!!!! I tried to e-mail her back, but Netzero and Charter decided that they were drawing the line at playing nicely together right there, and wouldn't let me e-mail her back. I could have used my Yahoo! Mail and e-mailed her, but remember, I was using Netzero High-Speed (hah!) Dial-Up Internet, and the appointment would have been given away, Wendi would have gone home for the day, fed and bathed her children and gone to bed by the time I got the e-mail sent, so I dispatched my hubby to borrow Lisa's cell phone and CALL her instead. I was overjoyed to find that the spot was still open, and, after professing my love for Wendi, who is the Worlds' Best Surgery Coordinator, we told her I'd take it :) So, September 11th at 7:30 AM, I will be implanted. I CANNOT WAIT!!! I am SO BLESSED!!!!!
Of course, it will be documented, and I'll probably take some gross pictures, and will share all the hair-raising details, so watch this space...I will have something to blog about!
We're headed out in a few minutes to the Dollywood Dixie Stampede (I would hyperlink, but I would like to finish this post today). We've gone several times before, but it's an awesome show and always worth seeing again. I will post a few pictures SOMETIME of our travels. As
dial-up royally stinks, and the nearest wifi hotspot is supposedly about 20 minutes away, it might be a few days before I can either post with any regularity or post pictures, but I'll be back pretty soon :) In the meantime, y'all can enjoy my good news...and disregard my ticker, since it would take too long for me to change it today :)

Thursday, August 31, 2006

If everything goes as planned...

My cochlear implant surgery will be Friday, October 27th. I got an e-mail from Wendi tonight listing several dates, and I chose the first available one...that was as soon as I could get in. Unless something comes up between now and the time she puts it on the books to keep me from getting that date, it looks like that will be the Big Day. That day will be almost seven months since I started the entire process of getting a CI. Much longer than I planned...but one thing I have learned from other CI users is that the whole process is a lesson in patience.
Even after I am implanted there will be a need for patience. I won't hear overnight the way you do. It will take weeks, months, or even a couple of years before my brain learns to interpret the sounds. I will have audiotherapy for a time to retrain my brain...much like a stroke victim has therapy to retrain their brain to work with damaged limbs. All the same, it's a start. Getting the CI won't be the end of the adventure....only the beginning!!
I need to get to bed. I am driving to Gatlinburg in the morning...and I need to be at least partly awake!

Monday, August 28, 2006

A GREAT day!!

*snip*
...I told Dicky that the way my day was going, I FULLY expected to come home from my Monday errands and find the title in the mail and my insurance approval on the BCBST website. I honestly did, because, you see, with God, all things are possible. And do you know what?
No title, but yes, finally, as of this afternoon, I am APPROVED for cochlear implant surgery! After being told that I had about a 90% chance of being turned down the first time I applied, I was prepared to be denied. I would have been happy enough to be denied, just as long as I knew that insurance was working on it. It was so exciting to see it in print! I have e-mailed the surgery coordinators, and hopefully they will get back to me in the next day or so to give me a date. It may be a couple of months down the road, but I will be so happy to just have a date!!!
I need to learn to live what I preach...that if there is something troubling you, pray about it, and trust God to take care of things as He sees fit. I believe it...it's just so hard for me to give up my control sometimes, even though, in the long run, what little control I have isn't usually worth much :)...

Wednesday, August 23, 2006

In response to my inquiry:

I e-mailed BCBS and asked 'em how things were coming along. Here's the update:
The review of your Pre-determination is in the final stages of the
process. The Pre-determination was received on 08/10/2006
and the normal review time is up to 14-21 days. As soon as the
review is completed a letter will be mailed to you and your
professional provider, however, you should be able to view the
information under Member Self Service.
So, hopefully, we'll hear something in the next week or so, although my experiences over the past few weeks have taught me not to hold my breath. If we do, we do, and that will be awesome, one way or another, honestly...I just need to hear SOMETHING so I can go on to Step 2, whatever that is. If we don't, I'm going on vacation in a few days, so I have something to look forward to, and I'll worry about it when I get back :)! *snip*

Saturday, August 19, 2006

Children with Bilateral Implants:

A neat news story and video here. The video loaded quickly on my computer and it's worth a quick watch...it explains the implant, and seems to support chldren who receive two implants.
I thought that it would be informative to those of you who are unfamiliar with the process. My grandmother thought I was getting a cochlear transplant...a cochlea from someone else transplanted into my ear. The implant is an amazing process :)

Linda also made mention of the PBS special "The Sound and the Fury" in the comments section. It is a movie that chronicles a family that divided over the use of cochlear implants...one side of the family thought that they were betraying their Deaf heritage by being implanted, and the other side chose the benefits of being able to hear. It divided the family at that time (2000) but there is an update out..."The Sound and the Fury: Six Years Later". From what I understand, the side of the family that was so opposed to implants saw how well the side of the family with implants was faring, and chose to have their own child implanted so that she, too, could have the benefits of hearing. That's just what I've heard. I wish I could see it. Wonder if it's on video?

Tuesday, August 15, 2006

I got this e-mail from BCBS today :)

On 08/10/2006, the Pre-determination was received from
Dr. Haynes. Currently, the Pre-Determination is in review. The
normal review time is 14-21 days. Once the review is completed a
letter will be mailed to you and to Dr. Haynes stating the approval
or denial. Please feel free to check the status with us anytime.

The pre-determination may not show under the authorization section
of BlueAccess until the review is completed.


OK...so they FINALLY HAVE THE INFORMATION, and they are REVIEWING IT. So, hopefully, in a couple or three weeks I will have my answer, yes or no. They're working on it. That's all I wanted to know....

Monday, August 14, 2006

Can't sleep...

*snipped from original post*

...In between all that whining, I might e-mail BCBS and the doctors. They haven't heard from me in four whole days. I used the relay website that Laurie (she posted about our visit...go read) sent me tonight for the first time (I activated the Discover card that I've had since April) and it works AWESOMELY, so in a few days, I might progress from e-mailing them to telephoning them. Wouldn't that be fun? I have heard repeatedly this week, over and over again, from MANY people; CI users, audiologists, former audiology staffers, former insurance people, the same mantra: Bug the crud out of them. It goes against everything I am (I don't like being annoying), but I'm hearing that nice isn't what gets results here. Sooooooo..........
Thanks to everyone who is praying for and supporting this journey. I believe that it will happen. It's just all a matter of when, and God has his perfect timing for it...

Thursday, August 10, 2006

SO much fun today!!

I got to meet another blogger today! If I remember correctly, I met Laurie on Yahoo! Groups. I posted the link to my blog, and she e-mailed me with a sweet comment about reading my blog and enjoying it, then posted a link to hers. She has been one of my favorite bloggers ever since, even though she's on the go too much to keep her blog updated properly ;). She let me know a few weeks ago that she would be in Nashville this weekend, and I told her that I would love to meet her while she was in the area!! We met today at Opry Mills Mall...we ate at Chili's and then walked around and shopped for a while. When it was time to go home, I realized that we had been together for four and a half hours....but it didn't seem nearly that long...time sure flies when you're having fun!
Laurie and I had plenty to talk about....she is another cochlear implant user. She was implanted with the Nucleus Freedom last year and has had great results. I was so encouraged by listening to her story and am even more excited now...that's what happens when I spend time with CI users that love their new "ears"! She showed me some of the COOLEST gadgets for talking on the phone, listening to the radio, etc...and she showed me her iPod (I accused her of showing off...I would love to be able to use one!!!) I came home and ordered me a new Harris Communications catalog. When I got my last one, I was in the denial phase ("I'm not deaf, just hard of hearing, and I don't need any of this stuff"). I have since gotten over it and am open to anything that will open my doors of communication just a little wider!! "I'm deaf as a post, and I'll take any help I can get". That's my new official position ;)
She is also a mom of four, so we enjoyed talking about our kids, of course :) She's an incredible, sweet person, and we had such a great time...I hated to say goodbye, but we both agreed we'd try to get together again sometime! :) Thanks, Laurie, for a great day!!!

In other news, Claire had her tubes put in yesterday. I had planned on a long recuperative period followed by much wailing and gnashing of teeth, but what I got instead was a bright-eyed, bushy-tailed little girl, who chirpily reminds me to put in her ear drops, and "don't forget my earplugs when I take a bath". If it had been me, I probably would have tried to get at least one days' bed rest out of the deal, but she did so well that we ended up going to church last night (I had originally thought I'd have to keep her home). Of course, at church she fell and skinned her elbow something dreadful, and I've heard more about THAT than anything else.
Claire also had kindergarten Open House tonight. She got to go meet her new teacher, and she met a few kids that are going to be in her class this year. She liked her teacher (I did too :) ) and is already talking about the kids in her class. One little girl was standing in front of me and happened to turn around and I saw two hearing aids behind her ears. Awwwwww! :) Of course, Claire was tickled to see the hearing aids, and we had to meet the little girl and her parents :)
I got a letter from the surgery coordinator at Vanderbilt today...she said in her letter that she was RE-faxing the paperwork to BCBS (her emphasis, not mine). So, apparently, she has sent it in already. I e-mailed her back thanking her and told her I would stay in touch with both her and BCBS until I saw that the pre-approval process was underway. Hopefully, things will start moving now. If not, the e-mails will continue :D
I'm going to try to have a good attitude and give everyone the benefit of the doubt. I am sure that everyone is doing everything possible to ensure that I get this implant as quickly as possible (yeah). If I find out otherwise, and e-mails don't do the trick, Laurie e-mailed me a link to an online relay service...I can type what I want to say, the relay people say it for me, then they type the other person's reply for me. I might be able to harrass by phone after all! Cool!
In the end, as Laurie and I discussed today, this is all part of God's master plan for me...and when the time is right, it will happen. I have faith, and have no choice but to be patient :) Posted by Picasa

Tuesday, August 8, 2006

Insurance Update

I know not all of you are interested in all my insurance/cochlear implant mess. For all y'all, there's an update and pictures underneath this post :) For those of y'all that are interested, here's the latest:
I was told when I had my evaluations that I should hear from my insurance within 30 days, approving or denying my cochlear implant. As if that wasn't long enough for me (impatient, you know) the thirty days have now passed, and I've heard nothing. I wasn't expecting THAT. I e-mailed both of the surgery coordinaters from my surgeon's office on July 25th asking them if they knew anything about the current status of my claim, and heard nothing from either of them. I e-mailed my audiologist on Friday, and she said she'd check into it.
I went to my CI meeting on Saturday, and several folks asked what the current status was on my implant. I told them that I was waiting on insurance, and they suggested that I start investigating to see exactly what insurance had, what they needed, and who needed to get what to them, so they could process my claim. So....
Last night I went to BCBS's website and found a "contact us" link. I e-mailed them telling that I thought I would have heard something by now, but that I had heard nothing, and asked them if they needed me to help them in any way...perhaps there was a paper somewhere that they needed? or a phone number? Was there anything I could do to move things along?
This is the e-mail I got from BCBS this morning at about 7:30. One thing I can say about 'em....at the moment, they're on the ball :)


This is in response to your e-mail concerning the status of your
Predetermination for a Cochlear Implant.

As of today, 08/08/2006, a Predetermination has not been received.
The normal review time is 14-21 days. Once the review has been
completed, a letter will be mailed out to you stating whether the
service has been approved or denied.

Please ask your doctor to submit your records to BlueCross
BlueShield so we can start this process for you.

Oy! They're waiting on something from the doctor's office, and they haven't done anything at all towards my pre-approval!!! Only problem is I don't know which doctor, or where, so this morning I e-mailed 'em all. I have already heard back from my surgeon...he said that he is getting his staff busy working on it. I like that man :) I didn't notice until just now that when he replied to me, he CC:d his reply to his two surgery coordinators...the two that I e-mailed July 25th. Perhaps NOW I'll get a reply.
Am I upset? Uh...well....I don't know. I had been checking the BCBS website, and there is a section there for "pre-approvals and referrals". I figured that there should have been something there about the implant, but there was nothing. I've been checking it for several days now, and nada. So I kind of figured that there was a holdup somewhere...I just didn't know exactly where the holdup was. So the e-mails will continue. They will be polite and friendly, but they will continue, until I get my approval (however long that takes). If I have to hold somebody's hand all the way through this thing, I'll do it. I'm just not patient enough to sit back and wait. I want to see some results. Sometimes you just gotta do the thing yourself :) Keep the good thoughts and prayers coming. I need 'em all! :)

Thursday, June 29, 2006

The Big Day: Cochlear Implant Evaluations

(First of all, here is my most recent audiogram (done April 3rd). I don't have a copy of the audiogram from the evaluations, sorry. Instructions on reading an audiogram can be found here:
Remember: X is for the left ear; O is for the right. For reasons I don't understand, even though my audiogram shows hearing in my left ear, there is none. Instead, at those frequencies, I do not hear sounds, rather, I feel a buzz in my head. That is called "vibrotactile hearing loss". In my right ear, I have a really strong hearing aid, which helps tremendously, though not as much since my last loss March 30th. )



We got up around 7:00 and got ready to head out. Our appointment was at 8:30, and Mapquest assured us that we only had about a twenty-minute drive. We left the hotel at 8, and promptly missed the on-ramp to get back on the interstate. I helpfully told my husband that the interstate looked busy anyway, and surely we could find it on our own. So we drove around for around twenty minutes before we finally stopped and asked the owner of a rather scary-looking local establishment if he could tell us where Vanderbilt Hospital was. His "Whooee, you're a long way from Vanderbilt!" was not reassuring. Anyhow, he did give great instructions, and we found it with very little trouble. However, the building that I thought we were supposed to be going to was no longer there, so we had to consult our paperwork and keep looking. We finally pulled up next to some nurses on the sidewalk at Vanderbilt and asked them where ____ was. They pointed way afar off and so we headed that direction, only to see nothing that looked even remotely similar to what we were looking for. We finally stopped and asked a parking garage attendant where to find what we were looking for, and he told us precisely where to park and what elevator to take. Parking garage attendant: 1, nurses, 0. So, we straggled in some twenty minutes late :( Argh :(
In a few minutes, my new audiologist, Susan Amberg, came out. She asked Dicky to stay behind in the waiting room while she did some hearing tests. She said that they would take a couple of hours and she would come get him when she was finished. I left him the laptop and went with Susan. She led me to the familiar soundproof vault and did some tests that I wasn't familiar with (I should have asked what they were. I'm pretty sure one was a standard tympanogram, and the other was similar, but lasted longer, about ten minutes per ear. I got a strange ticklish sensation in my ear while she was doing this one. Anyone want to tell us what this test was?) Then, off came the hearing aid, and on went the headphones, and the testing began. After the first test, with the standard beeps and whistles, she came in and told me that she was going to take my hearing aid and test it. I expressed concern at this point and said that I was afraid that I might not be a candidate for the implant. She said, "Are you kidding? Your audiogram is terrible!" which was actually reassuring. I did tell her that I was concerned about inner ear malformations being an issue, but she assured me that very few people had such severe malformation that they couldn't have the surgery. I asked her to point me in the direction of a Coke machine and a bathroom while she worked on my hearing aid, and I got Dicky and we took a ten minute break :)
When we came back, I suggested that Dicky plug the laptop up and play cards for a while, since there weren't any magazines in the waiting room. I headed back to the room and Susan came back a couple of minutes later. She handed me my hearing aid and put another one in my left ear. It felt so strange since I've never worn anything in that ear before! Then the next hearing test began. We did several tests....lip reading without hearing aids, lip reading with hearing aids, listening to sentences and repeating what I heard, listening to her say a word and repeating it back to her. When I was finished, she reported that I had done well on the comprehension part....almost a little too well. Apparently, any score over 50% is an automatic disqualifier for the surgery....and I had scored FORTY-NINE-PERCENT, which was unbelieveable for me, since I didn't think I did all that hot at all. Oy! All of these tests had been done with only the right hearing aid. I didn't realize that the left one wasn't even on, but when Susan turned it on, I knew instantly that it was on....every time anyone spoke, I felt a massive blast inside my head...the vibrations were so strong that the hearing aid was literally unbearable. And I heard nothing :)
Susan called Dicky in at that point, and we discussed what the implant could and couldn't do, the differences between brands, and then she showed me the actual implants (she showed me both the Nucleus Freedom and the Advanced Bionics HiRes Bionic Ear system ...if their center worked with the Med-El brand, she didn't mention it). I told her that I had already done plenty of research, had met others with implants, and was on several Yahoogroups and had heard plenty of stories about implantation surgery, hookups, issues with CIs, recalls, etc., and that I already knew that I wanted the AB HiRes implant. So....it's been ordered :) Yahoo! I am holding out hope that before my actual hookup date, the new 120 channel processer will come out, but if it doesn't, we will upgrade to the new processer at a later date (our center, unlike some, doesn't offer a second processer to trade in).
We left there around 11:30 and drove down the road a bit to our next stop...St. Thomas Hospital. We had an appointment there at 1 to have a head CT done to check for structural abnormalities. Since we had a little time to kill, we looked for lunch, but the only restaurants around were a Taco Bell and a Dairy Queen. We opted for the former and scarfed it down then headed to the imaging center for the CT. (Found out later that there was a Subway in the hospital on the imaging center floor....waaaaaaaah!) The CT went fine, with minimal waiting, then we headed upstairs to meet with our surgeon, Dr. David Haynes. I had never met him before, but really liked him. He was very professional but very friendly and warm as well. We got several surprises at that meeting. Firstly, my CT came back perfectly normal. There is no obvious reason why I don't hear. Everything is as it should be. I don't have LVAS; in fact, I don't even have Mondini syndrome (the doctors told my mom back in 1975 that it looked to them like I had Mondini syndrome. Apparently, imaging wasn't so hot back then). Secondly, he informed us that he wasn't big on risk-taking, and he didn't want to damage my good ear if my comprehension was at a near acceptable level, so he is opting to implant my "bad" ear....the ear that I haven't heard a sound out of in thirty years. He said that numerous studies had been done in sucess rates in good ear vs. bad ear and he felt like we had a chance at getting some hearing in the bad ear. I was flabbergasted. To be perfectly honest, it was one scenario that I was totally unprepared for. So now...there is a possiblity that I will be able to hear out of TWO ears. What a gift that would be!!
Thirdly, he doesn't shave hair off when he does the surgery. HALLELUJAH! I don't have enough hair to shave!!!
Fourthly, when Lucille, the surgery coordinator, came in, she told me that once they submitted their data to our insurance company, we had a ninety percent chance of being turned down. WHAT?!?! She went on to say that it's practically routine...that insurance companies just don't like paying up, even if it clearly states in their policies that they'll pay. In those cases, we just appeal, and appeal again, and again, if need be, until they pay. So now we wait to see if we're in the unlucky 90% or the more fortunate 10%. After we're approved, and who knows when that will be, we'll set the surgery date, and that date depends largely on how busy Dr. Haynes is. So all I know to tell you about when the surgery will be is that it will be in the future. Not this month. Hopefully by the end of the year. Who knows. Anyway, I left with a headful of new, exciting, interesting information....with my implant on order :) Yes, I am a candidate! Yes....if God wills it and Blue Cross cooperates, it will happen!! Wahoo!!
We left and went to eat at Carrabbas', but they weren't open yet, so we went to Davis-Kidd of Green Hills and browsed for a few minutes. I was drawn to the "Autographed Copy" section near the door, and found a copy of "Cheap. Fast. Good!" by Beverly Mills & Alicia Ross (autographed by Alicia Ross). I snatched it up...it has been on my Amazon.com wish list for several weeks, and it was RIGHT THERE, and it was even better in my hand than it looked online :) I also drooled over the latest edition of Paula Deen's magazine, until my husband told me to buy it. I told him that I was to cheap to buy it, and he promptly responded that he was buying his own copy for himself, and I could read it. What a man! :) We went on to Carrabbas' and shared the antipasti platter and the Chicken Parmesan. We hadn't eaten there in months, and it was SO good!!!!!
Then we headed back home....we went to MIL's and picked up the kids, and talked to my SIL for a few minutes. She reported that the cousins from Michigan were on their way, and right about that time, they called and said that they were at the Tennessee border. So we loaded up the kids and went to my mom's to give her the report on the big day :) We stayed there a while, since we had a lot to tell, and both Mom and Daddy had been away (Mom in Texas and in Monterrey, Mexico, and Daddy in Nicaragua). We left with goodies from Texas, Monterrey, and Nicaragua (I'm proud of my "Italia" soccer shirt Daddy brought back....especially since Italy is still playing in the World Cup!) We then ran back across the highway just in time to see the Michigan cousins pull up at my mother-in-law's house. I had never met them before, but they were a pleasant bunch, and we stayed at my MIL's until nearly 11 chatting, then went home and COLLAPSED in the bed!!!! What a HUGE day!!!!!!!!!!!!!!! Posted by Picasa

Monday, May 8, 2006

I've been....

researching and thinking this week. I came home from my vacation energized and ready to start dealing with whatever is ahead of me. First off, I found several cochlear implant Yahoogroups and signed up. I also found a couple of message boards to visit, to get to know others that have been down this road before and to share their experiences and learn from their successes and failures.
I have researched my hearing loss. My mother remembered out loud that the doctors found that I had a cochlear malformation during my many tests as a small child. This malformation is called Mondini dysplasia. I started looking to see if people with Mondini are still viable candidates for cochlear implants, and was happy to find that most of them have few difficulties. However, in my research, I stumbled on this article about a disorder called LVAS. I shared it with my mom and we feel that this may very well be the answer to questions we've had about my hearing loss for years. At the time of my loss, back in 1975, small children with sudden, profound sensorineural hearing loss were very rarely seen, apparently. It is interesting to note that LVAS wasn't diagnosed or given a name until 1978. I have no idea, honestly, if I have the large vestibular aqueduct that this article refers to. I hope I can find out when I have my hearing tested for my cochlear implant candicacy. I just know that everything I read about children that have this disorder fits perfectly!
I've been researching the kind of implant I want, too. THANKFULLY, there are only three makers of CIs worldwide, I believe. I have ruled one of them out, and am trying to decide between Advanced Bionics' Auria and Cochlear's Nucleus Freedom. To be perfectly honest, it's a dreadful decision to have to make....lol! They both look terrific, and the people that I've met online are loyal to whichever brand they've chosen, always. Both companies have worked hard to keep abreast of the most cutting-edge technology and I have no doubts that I'd be happy with either one. I am making a list of questions that I have (some of them can be answered by the folks on my CI lists) to ask the audiologist and the surgeon in June. Advanced Bionics has sent me a huge box full of brochures, DVDs, and catalogs to sort through, and I requested information from Cochlear, too, which, they told me today in an e-mail, is on the way.
I've about done all I can do at this point, so now it's sit back and wait time. This past week has been a good week for it, since the weather was crummy last week and we didn't get out much (plus I had an awful cold/sinus thing going on! Ugh!). It's supposed to be warmer this week, so hopefully we'll be able to get out and go a little more, be outside a little more, keep moving and keep my mind off things I can't do nothin' about ;)!
In other news, Katie and I have been talking about her homeschooling. I am so afraid that as the kids get older I won't be able to deal with the high school material. Will is adamant about staying home, but Katie is thinking seriously about going back to school. I'll deal with Will somehow....several of the homeschool companies have DVD programs that we might look into. I know that many homeschooling families do great in high school, but I have come to accept my limitations, and don't feel comfortable teaching on my own. I am thankful that we know several people that would make excellent tutors down the road, and Will's sharp...we'll make it work somehow. The reason I focused more on Katie going back to school is that she is simply more sociable and more adaptable than her brother is. I know she would do great in school and would make more friends than we could shake a stick at. Right now she is leaning towards going back. I promised her that if she went for a year and didn't like it, we'd re-evaluate and try to find something else that worked. Now I"m trying to decide where to send her to school...I have four middle schools to pick from!!
Hope everyone's having a good week?
Smiles to everyone..........

Thursday, April 6, 2006

Update:

I've (almost) survived the week! Hallelujah!
It's been a kind of cruddy one. At first I thought I could smile my way out of it and everything would be fine, but after a day or so, I realized that I don't like any of this one bit, and I want it fixed, and I want it fixed now. And, unfortunately, progress is s-l-o-w. My mom came over today and we got the phone and she called my audiologist and my previous audiologist (no more phone for me, unfortunately. Now we wait for my lovely TTY machine to arrive in the mail), trying to figure out what's going on, when it's going on, and who's doing it. Anyhow, I think we have the "who" (he came highly recommended by both new audiologist and old). It's the "when" that's making me whine. Robin said that it might likely be June before I can have the surgery, since this wonderful doctor is so wonderful and in high demand. In the meantime, she said it will more than likely be as long as another week before I even know when my evaluations will be. Apparently, I will have a long day of tests, all at once, and the different testers all have to coordinate their respective schedules and get back with me. After the testing, they will let me know if I am even a candidate for the surgery, and then we will set a date.
I am SO, SO glad I am back on my anti-depressants. (Did I mention that?) I can't tell that I'm on 'em, exactly, but if I wasn't, I can't imagine how I'd be, since right now I just want to crawl into bed and stay there until June.
My husband said tonight that I might want to just leave my hearing aid out some days and enjoy the quiet. It wasn't a bad idea. It would give the kids and me both some idea of what might be ahead and I wouldn't have to listen to this garble I'm hearing now! Perhaps just half a day or so here and there. Something to think about.
If you have read this far, thanks for your support. I know that the positive, chirpy me is still in here somewhere, but she's taking a break, I think ;). This is the real me right now. Blech!
Keep praying! :)

Monday, April 3, 2006

I really have no idea what to name this post. I have had such a wild range of feelings today.
I found out today, after some simple hearing tests, that some of the tiny bit of hearing I have had for thirty years has left me. I first noticed it Thursday night, at a Bible study, when all the noises seemed to blend together more than usual, and voices were muffled, and my hearing aid just didn't seem loud enough. I changed the battery, since that usually fixed it. This time, however, it didn't help. I decided that it was probably cold and sinus pressure (although I felt fine) and decided to wait a couple days before panicking.
Friday I changed the battery again, thinking perhaps the previous one was defective. No such luck. I decided to blame it on my hearing aid, although it looked fine, and hadn't been dropped, gotten wet, or otherwise maligned. I decided to just tough it out over the weekend (it was a wonderful one, actually, since my mom spirited Ellie and me away to Atlanta, where we shopped at IKEA, ate at Macaroni Grill and On the Border, and spent the night talking, playing with Ellie, and laughing over Monk).
This morning I got up and went to the audiologist. I didn't have an expectation of getting in today since I didn't have an appointment, but couldn't hear well enough to wrangle an appointment over the phone, so I thought I'd just walk in and see what they could do. At first they were just going to work on my hearing aid and make an appointment for another day, but when they learned that my hearing had dropped abruptly and not come back, they whisked me back to the testing booth, where I dismally failed my tests. Robin, my audiologist, showed me my previous test from 2001, which wasn't too great, and then today's, which was significantly worse.
What I had to work with before wasn't awesome. Since I was four years old, I have been 100% deaf in my left ear, and about 95% deaf in my right ear. I am a good lipreader, and have a Cadillac of a hearing aid, so I've managed to do fine over the years. What I learned today was that even my super high-powered hearing aid won't be enough for me to hear well if my hearing doesn't improve on its own. If I continue to lose sound, it won't be long before I will hear nothing at all. Since my original loss was sudden, dramatic, and unexplained, I have always prepared myself for the rest of it to go the same way, and it looks like it's happening.
Robin and I talked it over and the plan now is to consult with a surgeon and try to move forward with Plan B: a cochlear implant. I have kept it in the back of my mind for years, as my backup plan, but hoped I wouldn't ever need it. Robin is supposed to call me with an appointment time and day to meet with the surgeon. Then I will have the prerequisite tests and evaluations to see if I am a candidate. If everything goes smoothly, hopefully soon I will be able to try this marvel of technology for myself. It is exciting and nerve-wracking all at once. If they decide to implant my "good" ear (the one that is failing), I will be without any sound at all for around a month after the surgery. I just can't imagine it! However, it will be worth it if I can keep some sound.
Pray for me, please...that everything will work just as God means for it to, and that hopefully I will have some hearing restored, one way or another. I can't imagine a life without sound, especially the sounds of my children!

Sunday, January 1, 2006

Hi!! Welcome to my CI blog! If you're here for the first time, let me quickly tell you a little about my story!
I am a 37-year old wife and the mom to five beautiful (hearing) children. If you want to get to know me better personally, I'd love to hear from you, either in an e-mail or through the comments section. I have another blog here. I update it pretty frequently and brag about my kids a lot ;).
I lost my hearing when I was four years old. It happened within minutes, and the cause was never determined. My hearing did fluctuate a little over the next few months, and when the dust settled, I had no usable hearing in my left ear, and only about 5% hearing in my right. I was fitted with hearing aids, took lipreading and sign language classes, and started off to kindergarten that fall.
My hearing remained stable for over thirty years, so I was content to do what I'd always done...wear hearing aids and lipread. However, in March of 2006 I got a rude jolt when I suddenly lost several decibels of hearing right in the middle of a conversation with a friend. It never came back.
I panicked, obviously, and since my hearing was considerably poorer, I knew it was time to move to the next level: cochlear implants. I had my CI evaluations at Bill Wilkerson Hearing and Speech Center and at St. Thomas Hospital in Nashville in June of 2006. I assumed before the evaluations that Dr. Haynes would want to implant my better ear, since I had had absolutely no usable hearing in my worse better ear for 30 years. Based on my comprehension scores, however, he opted to go with my dead (for over 30 years!) left ear. He reasoned at that time that bilaterals were becoming more common and we could always do my "good" ear later, if we so chose.
After weeks of careful research, I decided to go with the Advanced Bionics HiRes 90K implant. At the time I knew that there was a new processor on the horizon geared towards music lovers, and I wanted in on that. AB also seemed to be leading the pack in technological advances, and their customer service was out of this world...whenever I contacted them, I was actually put in touch with PEOPLE, and they all seemed to be caring and helpful. I was sold :).
It took a couple more months to get insurance approval (par for the course) . When that finally happened, though, due to a lucky last-minute cancellation, I had my surgery less than two weeks later, on September 11th, 2006.
I was activated on October 10th, 2006. It was nothing like I imagined it. I didn't "hear" sounds; rather, I felt vibrations inside my head, jackhammer-style. It was not entirely unexpected; in the sound room during the CI evaluations, I was given a hearing aid for my left ear during the testing, and had the same horrible vibrating sensation whenever the tones were played. This was referred to as a "vibrotactile" sensation. Both Dr. Haynes and my audiologist, Susan, were confident that this would get better over time, and they were correct...at my first mapping sensation after activation, the tones had a distinct musical quality about them, and the vibrations weren't as strong.
I had a difficult time wearing my hearing aid and the CI together. It was very frustrating trying to deal with the vibrations from the CI and the tinnitus that had developed in my "good" ear. And soon there was another wrinkle: The hearing in my "good" ear started fluctuating wildly, sometimes several times a week. At this point, in frustration, I more or less gave up on my CI. Right thing to do? Probably not. But I wanted to enjoy what little hearing I had left while I had it, and I did.
It didn't last long. One Sunday morning in church, at the end of March 2007, I heard a sharp "pop", then heard raging tinnitus in my good ear, then things gradually started getting quieter and quieter. I figured it would come back...it usually did...but two weeks later, I was forced to accept that it was gone.
At that point I went back to my audiologist, had another mapping session, and handed over the hearing aid. From that point on, I never wore it again. Without the competition from my so-called "good ear", amazingly, my CI flourished. I needed another map a week later because the previous one wasn't loud enough anymore. That was the first time that had ever happened. About two weeks later we were in the car and my son said something from the seat behind me...and I understood him. It was just short of miraculous...I could really hear!
I still have a strong vibrotactile response, which is not due to any flaws in the implant itself, but due to the way my brain responds to stimulus. For this reason, I have never been able to tolerate high sensitivity levels, which prevents me from getting really good speech comprehension...very frustrating and uncomfortable.
In December 2006, when I went back to see Dr. Haynes for a post-surgical checkup, his parting words to me were, "Just let me know when you're ready for a second implant!" I started seriously thinking about it around that time, but was hesitant to go "whole hog" because that would mean giving up my beloved music for at least a short period of time. In March 2007, however, when I lost my residual hearing, it was no longer a valid argument, so I immediately started the process to get a second CI.
My insurance company, BlueCross BlueShield of Tennessee, initially denied my claim, saying that a second implant was not considered medically necessary. We appealed that claim and waited. On August 13th, 2007, I found out that they had approved my appeal...in fact, they changed their policy entirely, so that everyone in the state of TN that wants bilateral implants can have them...isn't that great? On November 5th, 2007, I had my second CI implanted, and on Nov. 20th, 2007, we switched it on....and I could hear...immediately...and well, at that (YouTube video here). In the first two weeks with that implant, I gained speech comprehension that was better than any I had ever had before. I wish I had done this years ago. We had the usual bugs to work out trying to get the sound "just right" but I am amazed every day at the marvel of technology I have in my head...it has not only given me my hearing back, but it has given me even more than I had before....incredible! I am a huge advocate for cochlear implants...I have seen firsthand the difference they have made in my own life, and I wish everyone could see for themselves how incredible they are :)
I am having my first implant replaced on August 28th, 2008, due to problems that we can't seem to sort out. I am not expecting the reimplant to fix everything...but I am hoping that I will be able to tolerate it better. If my brain and that implant never do learn to play well together, I am ok with that...my good right ear has far exceeded any hopes and expectations I ever had.