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Monday, October 27, 2014 ( 9:58 AM ) Jessica Oops, I forgot to post recently! I've heard that folks will stop blogging about their cochlear implant progress and such once they get to a point where things don't change so much, but although things seem to have slowed down, I still have a lot of "wow" moments! I'm just not a faithful writer/blogger. I will try to post once a week or at LEAST once a month... I have a cold... it started Saturday. I was supposed to see Leslie tomorrow, but figured it would be best to reschedule. My latest new cool sounds are: I can hear the beeps when I check out groceries at the self-checkout line... they're low & quiet, but I know what they are and it makes checking out quicker & easier! I used to hear this before surgery but this is a new post-surgery sound... I can hear the beeps when I type my PIN number when getting gas. I've never heard this sound before. If the keypad has "flat" keys, it's harder to know if the number I punch in is going through or not so I used to have to look for the asterisk to let me know it went through. There are more cool sounds (and some not-so-cool... if I'm awake and reading or watching something on the tablet & Gary is asleep, he will probably also be snoring.. listening to music and stuff will block that out, though! Words still aren't clearing up so I still have to read along or know in advance what to expect word-wise. That's fine, I know it'll take time... the other day, I had an eye exam and the optometrist had me comparing 2 charts to tell her which looks better.. she called the charts 1 and 2 and I was able to tell the 2 words apart because we had planned it in advance. Something else I noticed is that most people sound male to me & sometimes scratchy. I think that may be the Darth Vader effect that people talk about. I never did hear people sounding like Mickey or Minnie Mouse or chipmunks. It's just that everyone sounds male & I don't notice much difference in the voices. I'm told that will change. My music tastes are changing: I still love my old favorites but they sound weird sometimes, a bit distorted & I can't hear all of the sounds. I'll write more about my maps another time, though I still don't quite understand them, just that my audiologist has them set to 80 IDR... (input dynamic range). I'm still not sure if I prefer the Neptune or the Naida... I usually wear the Naida when I go out and the Neptune at home, mostly because the Neptune is more comfortable: I can wear it off the ear. The Naida sometimes irritates my ear where the Tmic goes over the top of the ear... I can also plug the Neptune into my table with an audio cable. That is nice. I try to remember not to plug it in when the tablet is charging.. just playing it safe! I don't want to get zapped. I can stream sounds into the Naida with the ComPilot, but the bluetooth announcements are annoying... I should try it without bluetooth, with the audio cable connected to whatever and the ComPilot... Speaking of getting zapped, last week, I noticed that our local store was giving out electric shocks from static electricity... I need to get some dryer sheets to keep in my pocket to minimize this... The batteries on the Neptune don't last very long, about 4 or 5 hours... not sure of the exact number, though... The hearing test last month went well: I'm hearing at the 20-40 decibel range now... a HUGE improvement from before surgery, not sure what the range was with my hearing aid, but I think I can hear better now than with the hearing aid when I was younger. I seem to be understanding people fairly close to 100% with lipreading... other people seem to be understanding me better as well, but I still have to repeat myself sometimes. The tinnitus has abated a LOT... I've got it now, it's mild, but it's probably from coughing... We lost Molly & K9... I'm not sure what happened to them... I miss them and hope that they are okay, but suspect otherwise... we checked the animal shelter and they weren't there... and looked around a bit for them. We had wanted to try to find a new home for at least one of them... Labels: advanced bionics, bionic baby, bionic ear, cochlear, cochlear implant, cochlear implants, cyborg, sounds #Wednesday, July 16, 2014 ( 3:09 PM ) Jessica A few people have asked me "why now?" The short answer is that I was not ready until a few months ago... I've known about cochlear implants since around 1990 and it seemed kind of weird to me. I had a friend who had one, but we didn't talk about it very much if at all... or rather, I don't remember talking to him about it.. In the spring of 2013, I went for a hearing test and the audiologist and the ENT both spoke to me about CIs... they said a hearing aid can't help me as much any more, not even the newer ones. I was thinking "no WAY" but decided to at least go ahead and check it out and go for the cochlear implant evaluation. I went and although I was interested, what put me off was that the audiologist there basically told me to "forget about music"... first thing I did when I got home was to do an internet search for "cochlear implant music" and saw lots of links. I have seen mixed reports from musicians about being able to enjoy music... I decided that I would make a decision after getting the MRI to see if I can even get a cochlear implant. Well, I was supposed to get an MRI last summer, but that did not happen until December 2nd 2013. I joined a few CI facebook groups and yahoogroups and a few other forums and websites & read them passively. All of a sudden, a couple of days before the MRI date (12/2), I had a major turnaround and decided that yes, I do want a CI... I didn't feel like I had a whole lot to lose and as far as the music issue, I would work at it. Overall, once someone gets a CI, it takes work to train the brain & I am willing to do that... my music hearing history (piano lessons from 7 through teens, flute in high school, music in general) tells ME that I have a good chance to be able to hear music at least okay with the CI. I hope to be able to play music again, but the best thing will be to be able to just enjoy when others play, recordings, etc. From the links that I sent in the last blog entry, I think that some of it may have something to do with programming. That said, I plan to keep my expectations low... to the point of being more interested in the 1 week post op checkup rather than the activation day. I'm guessing that hearing all these sounds, some which I haven't heard since I was 2, may be confusing... there will be beginner programs to help me get used to the implants. I have a memory of when I put my right hearing aid back on after not wearing it for a long time. The sounds I heard in that ear were disturbing...some of them (busses passing in NYC) made me dizzy. I regret not continuing to work on re-learning to use the right side, but I can't go back, so I won't worry about it... maybe someday I'll get a CI on that side, but let's first get the CI on the left side, my dominant ear... Labels: advanced bionics, cochlear, cochlear implant, cochlear implants, cyborg, med-el #Saturday, July 12, 2014 ( 2:04 PM ) Jessica This past week, I completed my Phase 2 cochlear implant evaluations. We stayed in Dallas (at a motel 6 near the hospital) to avoid the need to drive back and forth. We got together with my sister on Tuesday, had dinner at a Cajun place... The first one, on Tuesday 7/8, was with the audio verbal therapist and she gave us an idea what to expect, and wants the expectations to be on the LOW side so that we aren't disappointed. I'm working on that, though I do have hopes that I won't lose my ability to hear music.. even if it takes time to re-learn how to listen to it and adjust the processor, etc., etc.. I already knew that I would not come out of surgery OR activation with restored hearing and I KNOW that there will be a fair bit of work to be done, and that it may take a few months before I can make sense out of the sounds coming into the processor... hopefully knowing what to expect will be helpful... and knowing to just RELAX and stop trying every so often... just sit and listen passively & foctus on non-audio stuff for a while with the external parts on... Wednesday morning was the balance test. That was interesting. I had to wear these weird eye goggles with the left eye covered... first I had to follow squares with my eyes... then I had to count in different fashions while having cool air blown into each ear and then warm air.. counted backwards, counted by 2s... and 2s backwards... the afternoon visit was with the neuropsychologist and we talked about a lot of things related to getting a cochlear implant. At the end, I told her about my evaluation last year at UTSW and she said she was not familiar with the doctor or audiologist from there & she said that Dr Peters is very careful and thorough, and that he would not have sent me to see her unless he felt that he could help me... that is awesome. I should have a surgery date as soon as my surgeon reviews the reports from the various evaluations... I've been reading some/watching some and here are some links that I think would be good for everyone curious about and considering cochlear implants. If you have any recommendations, *please* send them to me! : Sound and Fury Part 1 Sound and Fury 6 years later The Heather World (This is a talk that Heather Artinian gives at her college. She is in Sound and Fury.) I'm not sure if the above links have captions on various tablets & smart phones, I will check my tablet and see if they do or not and will add those links. On computers, you can turn the captions on and off. http://www.washington.edu/news/2013/10/09/new-strategy-lets-cochlear-implant-users-hear-music/ Music! http://archive.wired.com/wired/archive/13.11/bolero.html article about hearing Ravel's Bolero with a Ci http://cochlearimplantonline.com/site/ Cochlear Implant Online http://www.c-a-network.com/index.php Cochlear Implant Awareness network Facebook Groups: https://www.facebook.com/groups/ciexperiences/ Cochlear Implant Experiences https://www.facebook.com/groups/10581738294/ Cochlear Awareness Networks https://www.facebook.com/groups/153601038015605/ Cochlear Implant Users https://www.facebook.com/groups/349059495171094/ Advanced Bionics https://www.facebook.com/Cochlear?ref=br_rs Cochlear Americas https://www.facebook.com/groups/MedEldiscussion/ Med El Labels: advanced bionics, cochlear, cochlear implant, cochlear implant reading and video list, cochlear implants, cyborg, med el #Wednesday, December 04, 2013 ( 12:53 PM ) Jessica I had the MRI today to see the condition of my cochlea (it is fine) and found the MRI experience pretty interesting and fun. The worst part of it was the needle for the IV that they needed to put dye in and even that wasn't that bad.. just queasy-making. I don't like needles unless they're knitting needles, tapestry/needlepoint/embroidery needles, etc... you get the idea.. as long as they don't poke me, I like them! I got there, had to do some paperwork and then was taken to a room to change. Then brought me to the MRI machine, I asked a couple of questions, one of which was whether or not I would have any opportunity to move or have a little cough. The technician said I could when the machine went quiet... in between tests. The quiet periods were usually VERY brief. I guess I'm not claustrophobic because I actually enjoyed being in the MRI machine.... I guess it also helped that they gave me a panic button and also there was a little window to look out of. Through that window, I could see outside & I counted cars for a little while. I lost count around 40 and focused on other things. I did not want to fall asleep because I wanted to make sure I didn't move. I can't promise stillness if I'm asleep! I watched the images on the inside of my eyelids some of the time (maybe I should do that with a sketchbook in hand for some interesting abstract art!) and in general enjoyed the different vibrations the machine made. One of them was almost like some kind of rock concert & almost made me laugh & want to dance, hahaha... that test shook the machine a little bit! Overall, I found that all my anxiety about the MRI was unfounded for me... but when I think about it, crowds can be somewhat problematic: when I was at a halloween parade or whatever it was in NYC several years ago, I got pretty uncomfortable about not being able to get out of the crowds easily. That was scary... After the MRI, we went to see the doctor. He said things look good and recommends doing my left ear, as I still get a fair bit of use out of it. I suppose that I will get an ear mold for the right ear & start learning how to use that ear again. I don't know if I ever got much use out of it, which is odd since that ear isn't "as deaf" as my left ear. It's like being right or left handed, I guess. Figure it'll take 2 or 3 months before I can have the surgery as they need to arrange things with insurance. Meanwhile, I can use the time for research research research! I've joined a couple of facebook groups and a couple of online forums. Every time I read something that someone wrote about their implant brand, I think I want to get that one... from what I'm hearing, they are all good, I just need to learn about the features of the 3 brands and also meet people who have them and see what they are like. When I told my oldest son that I'm planning on getting a CI, he said I will be a cyborg. Haha.. fun! "My mother, the Cyborg!" If anyone is interested in what I'm up to creativity-wise, check out my other blog: Patchwork Girl, Tapestry Weaver and Sometimes Painter! Labels: cochlear implants, cyborg, weaving #Sunday, December 01, 2013 ( 11:30 PM ) Jessica Back in June, I went for an evaluation to see about getting a cochlear implant (CI from now on).... fast forward almost 6 months: tomorrow I go in for an MRI to check the condition of my cochlea or whatever they need to do the MRI for. Then I'll have a meeting with the doctor a couple of hours later. I'll be taking a sedative when I get there... since Gary has to work, I'll be spending the day in Dallas or maybe Denton or both..hopefully the sedative will have mostly worn off by the time I get to the doctor's office. I've read a few blogs, I've looked at the literature that the audiologist at Southwestern gave me for Cochlear, Advanced Bionics and Med El. I really hope that when I see the doctor tomorrow, I won't have to tell him which company I want to go with because I don't know yet... but I will ask which they do the surgery for the most, etc... see if I can get a feeling for which company they find to be most successful. IF the MRI goes well and I'm able to have the surgery, (yes, I'm being careful with expectations), but from what I'm reading, the success of the process depends on how much effort I put into the process. Important considerations to me are: being able to follow conversations better and to be able to hear music better than I can now and maybe play music again. It would be nice to be able to talk on the phone sometimes. I think the last time I tried, we were in Wichita Falls and I had a few errands to run while the others were doing something else. When they were done, they went to a restaurant and I tried to call them to find out WHICH restaurant and WHERE it was because for some reason text messages were not getting through, so I had to call... I finally had to snag a stranger on the street for help. Right around the time that I got over to the restaurant, I got all of the backed up messages. Arrrgh! The last time I tried using the relay on the phone, the relay operator was very impatient.. I don't text anywhere NEAR as fast as I type, and one or two times I had to explain that I text slowly, blah blah blah... too frustrating. I suppose I could have used voice carryover... hmm. The last time I did that was when I was in the hospital when my twins were born... If I still need to lipread, that is fine: I'd just like to be able to lipread AND hear the speaker without a hearing aid squealing its ass off and annoying everyone in the room... turning my hearing aid helps me with some people, but the darned squealing... I'd like to (eventually, once I get past the chipmunk or mickey mouse or other odd initial sounds) know what people's voices sound like... and it would be NICE to hear my youngest son's voice before it starts to crack! <grin> (Maybe I should make everyone do some recordings, huh?) It would be nice to be able to actually hear the cats meowing... one of our cats apparently has a very quiet or maybe even silent meow. I'd like to know that for myself since when he does meow, it looks like he's yelling because he opens his mouth so big! I'm gonna stop writing for now so I can go read some more CI blogs and find some links that compare the 3 companies that make CI equipment. The literature that was given to me back in June is mostly "pick me! pick ME! I'm the best!" I hate that type of advertising... oh well. Labels: cochlear implants # |
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