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 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 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!! answer to a comment that was, 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 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 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 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 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! :)

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