Patchwork Girl's Rambling Warps
Monday, September 08, 2014
      ( 1:42 PM ) Jessica  
I've added some new sounds to my list of sounds I haven't been able to hear... I can hear whispers along with voices, but words still sound garbled to me, but the pattern of the words help boost my lipreadability to close to 100%.  The other day, Gary was talking to me and I didn't hear his voice, just the whisper & I asked him "are you whispering?" and he said he was...

The other day Pepper (our cat) was yelling at the window and I didn't know what it was. I told Indy to be quiet... my son told me it was Pepper. Oops! :) I wonder if I will be able to hear birds yet. I found some YouTubes of bird sounds, they are high pitched... "eek eek eek"...
I can hear Indy barking if he is in the living room... probably all the dogs, but Molly doesn't bark anymore (I think she may be deaf from an accident that happened about a month ago) and K-nine and Nutmeg rarely bark.

Yesterday I found myself turning the volume down on the tablet. I was watching a TV show at the time.  I've also been reading e-books while listening to the audible file. Amazon is set up so I can listen and read at the same time and it highlights the words so I don't lose my place. I wonder if I will be able to turn that feature off later on so I can learn how to keep my place when I get better. I was listening to something else the other day while reading along and it didn't have that feature. Gary was able to help with that.

There is also Overdrive for library books. I'm still researching that option.
Also, books on CDs and DVDs but I don't use that at the moment... right now I need to have a book to follow along with.

I also go to the MedEl Soundscape page to practice listening... mostly Let's Go Shopping. The words still sound garbled... watermelon and strawberry and pineapple still sound sort of the same to me. "These are grapes" is the easiest... I can sometimes pick out pineapple.

I have to go onto one of the other computers to do the AngelSounds exercises and there is also an English as a Second Language site here and there are others to listen to. I can listen to this one on my tablet, but not the Soundscape page (because it requires flash & I haven't figured out how to set that up if it's even possible).

I'll be getting a hearing test in a few days, curious to see how I do! It's nice to be out and about and not have to ask people to repeat themselves or explain that I'm deaf, that I need them to speak slowly. If someone turns away while talking, I can just ask them to face me because I need to lipread... haven't needed to do that yet. What's even cooler is that I was able to go a whole day without anyone asking ME to repeat myself! My speech must be getting better from reading out loud and paying attention to my speech.

Gary is picking up a set of headphones for me to use when listening to stuff on the computer and tablet. A friend told me that it'll bring the sound closer. Also, it'll allow Gary & I to listen to our stuff without getting muddled between the two...and maybe I won't have to listen to the weird puffing (bark whispers?) that Indy does out the window...

Last but not least, the other day I heard Gary fart & he confirmed it! I'm easily amused.
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Wednesday, August 27, 2014
      ( 12:44 PM ) Jessica  
It's a week since activation and I'm having a lot of fun with this... what follows is a list of progress bits:

Activation day: everything sounded like beeps, footsteps, voices, etc. At first, there was a delay, I would see them speak and then hear their beep voices. The only 2 things that sounded like they were supposed to sound that day was crinkling paper and music.
          SOMEHOW the pattern of the beeps allowed me to understand people...
          Even people who were previously difficult to lipread.
          I was able to understand almost all people who my son confirmed had accents, except for one man
          that he was not able to understand either.

I don't know when voices sounded like voices instead of beeps, but I think it took a day or two.
Thursday I was able to hear the train, which is about a block away.
Saturday I was able to have a brief conversation with a librarian that I always had trouble understanding.

Monday was my first AV session and I also saw the audiologist and got 3 new maps in my processor.
Monday morning, I heard Cracker meow. Yesterday I heard BleuMaus meow. It's easier to hear if the a/c is not going.

I think I have the processor set to 3 now, so am no longer using the maps from last week.
I need to exchange a few items but need to find out what others find useful. I need to find ways to wear the Neptune comfortably since the processor is off the ear. I have the clip attached and think that I need a 12" cable, maybe shorter (which I thought I ordered, but I have a 12" cable for the Naida, which I don't need.)
I need to decide which other battery to keep, the 110 or the 170. The 170 and 230 weigh the same but the 170 is shorter...

This morning, I woke Evan up by reading to him from a graphics book about Houdini...hopefully that's more pleasant than by being woken up in a more naggy fashion! :)

We're pretty much convinced that the accident Molly (7 or 8 month old puppy) had almost 2 weeks ago left her deaf. Darnit, I want her to be my hearing dog... she is a good size (40ish pounds, I can carry her if I HAVE to), good temperament, very sweet, etc... but if she can't hear the alarm and such, no go... her brother also has a good temperament, but is MUCH taller and at least 50 lbs...

One clue is that she no longer barks... she used to bark a LOT...

I don't HAVE to have a hearing dog to take everywhere...

Yesterday I worked on the Telling Tales exercise on  this site and was only able to do the first one. This morning I tried the Going Shopping exercise and was only able to complete level one twice and it took about 2 minutes and 15 seconds because I needed to repeat over and over and wasn't sure. There is an introductory level which allows me to listen to the sound of the different fruits and vegetables. Words sound very muddled... I am able to hear some breathy sounds!

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      ( 12:05 AM ) Jessica  
Monday was my first audio/verbal session.
We mostly went over what sounds I've been hearing, etc.

So far I have heard the train, which is about a block away... what were beeps on the first day now sound like voices, but they are not clear yet.  I heard our cat Cracker meow yesterday morning. It was VERY quiet, but I heard it. It's not loud enough to get my attention, we were having a conversation.

The A/V therapist was very curious about the hair color of my birth family as she said she sees a lot of redheads in her practice... my birthfather (who I have never met) has red hair.I wonder if it is related to my LVAS, which was seen in my MRI.. also surgeon found some more deformity... my parents and aunt said I wasn't born deaf & that the fever I had when I was 2 made me deaf... I'm still not sure of the role of the LVAS...

We listened to sentences with different patterns like "Reuven is 13 years old" "my name is Jessica". I could mostly pick which one by the pattern and could only pick out the words because i knew what was coming.

She wants me to read aloud and also practice some sentences with my name and with mom. Right now, the only time that "mom" will get my attention is if I hear it in silence..and then it just sounds like a voice, not like "mom"...I know what mom sounds like, I just can't make it out (yet?)

I'm hearing sounds that most people tune out, like the dog scratching or shaking his head or the train a block away.  I love hearing the train right now and may go to the tracks to listen to it closer up...

Also, I was mapped yesterday: I got 3 new programs and am using the quietest of the new one and kept 4 and 5 of the old ones. Maybe next time I'll ask if we should keep just the old one I use most and get 4 new ones. I don't think I'll be going back to the old ones... just a security/crutch thing! OR I'll see what Leslie (the audiologist) recommends. I'm using program 3 right now, which is the quietest of the 3 new ones. Programs 1 and 2 are the old 4 and 5... 

I want to learn/understand how the mapping works. Basically yesterday she set up 5 tones and we adjusted each tone until it was comfortable. I would have loved for the highest frequency to be louder, but I could barely hear it... 

We also met the guy who had his surgery right before me. We were both talking in Cochlear Implant Experiences on Facebook a day after surgery, talking about how we felt, comparing notes. When I checked his profile, I noticed that he was in Dallas... we then realized that we had the same doctor, etc...

One other thing that I'm not sure if it is a concern or not, since surgery, my voice has felt weird... almost like it feels thick... I thought that might go away after activation... my voice seems somewhat deep to me... but I'll have to do some reading aloud to get more used to my voice. I mentioned it to the nurse at the clinic and she spoke to the doctor who said to wait until at least 2 months after surgery to look into it, so we'll see. I just want to know if this is a normal side effect from the breathing tube/surgery... it wasn't one of the ones listed.


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Saturday, August 23, 2014
      ( 3:08 AM ) Jessica  
I've just been taking it easy yesterday and today. Sounds are clearing up pretty quickly. I'm still hearing beeps with some sounds, but many sounds that I can hear are making a little bit of sense. When Indy shakes, it sounds more like a slapping sound from his ears flapping against his neck... voices on videos sound like what I remember them sounding like, but I can only make them out if I know what's coming. Captions help here. This applies to music and speech. If I know a song, I can tell if it sounds right. I think I'm still missing some musical frequencies.

At the moment I'm not able to lipread people speaking in videos, but I can in person.. weird?

My voice still feels weird, and I'm still wondering if something is going on. I'm not too worried about it, though.

I wore the Naida during the day. The disposable batteries have not died yet. I still have not decided which of the 2 rechargeable Naida batteries I'm going to keep, and the 3rd will be exchanged for the ComPilot.

This is awesome and seems like I am picking things up faster than I thought I would. I do need to go out in public more and talk to people and listen to things. Tomorrow I will go to the library.

My sister just said "don't go to the mall yet!" umm... too late, we went Wednesday: it was that or sit in Dallas rush hour traffic! It was fine and even enjoyable...

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Thursday, August 21, 2014
      ( 11:59 PM ) Jessica  
Note: I wrote this post a couple of weeks ago...after surgery but before activation... I forgot to post it.

It took a while for me to decide to actually get a cochlear implant. I think I heard about them the first time in the early 90s, when I was living in Maryland and had a friend who had one. For some reason, I immediately discounted it as "not for me"... 

It wasn't until March of 2013 that I considered it. I went in for a hearing test & the audiologist talked to me a little about cochlear implants.  I was STILL thinking "nope, not for me, too close to my brain!"
The ENT at that office also spoke to me about it and said they would send a referral to a clinic that does cochlear implants. We went on June 11th, 2013 and I was impressed with all the information I got. All I needed at that clinic was to get an MRI to see whether or not there was any reason i couldn't have one.

My other concern was music, because the audiologist at the first clinic I went to basically told me to forget about music. Um. No. I love music too much for that. I did some research and found out that there is work being done to make cochlear implants work better with music and for some, it just does. I don't know what the factors are that make music good with a CI for one person and not another. I suspect it has something to do with hearing history and since I had piano lessons for a few years since age 7, followed by flute in high school & dabbling with music since then, that may be on my side. If not, they are working on programs to make music better for CI folks. However, there have been some people with a strong music background who have said that music didn't sound good to them.

What's interesting is that I was apparently born with Large Vestibular Aqueduct Syndrome, which probably played a large part in my hearing loss. this is something I'll bring up with the doctor next time I see him. 

 I'm feeling pretty much back to normal, except my throat feels a little weird when I talk, possibly because of the lack of sound in the left ear & maybe from the breathing tube during surgery... the others think my voice is back to normal now. Whether or not I have any residual hearing in my left ear remains to be seen... I think it takes about a month before they know, I'm not sure. Either way, what's important is NOT the residual hearing, but the cochlear implant...

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      ( 11:41 PM ) Jessica  
The cochlear implant was turned on yesterday... it went well. I wasn't expecting a "rock star" activation, I figured it would be beeps..and it was. At first there was a delay between the mouth movements and the beeps but didn't last too long. We also had the equipment orientation...

Most of the sounds I hear are interpreted as beeps but they actually made lipreading easier. There is a pattern to the beeps that i somehow interpret into spoken words and sentences ... I was able to understand a couple of people with accents (my son told me they have accents) without asking for help with what they were saying. We went to the mall after lunch after activation, so I got to speak to a few people...

A few things sound like they are supposed to, like paper rattling (from my son's paper shopping bag), and some voices are starting to sound like voices... and... shocker of the year: music! I was almost afraid to listen to music this soon and I decided to go ahead and try it so I would have it as a gauge for later. I picked up my pennywhistles and played a few scales. I like the lowest b-flat whistle the best..then I got brave and turned on spotify and the music sounded okay... not perfect, but it doesn't sound horrible like others have said it would at first. It's better today than yesterday.

Maybe to someone else, what I'm hearing would sound horrible, but I was expecting it to sound horrible and I don't think it does. I know it will sound better later. I have one of my Spotify play lists going now. Spotify is a website that has LOTS of music and I set up several play lists with different songs/types of songs/artists, etc.. I have a "CI practice" list... songs I'm pretty familiar with. What I think is happening here is I recognize enough to put together what I already know.

Earlier today, I tried out a practice listening site and got about half right. It was a list of multiple choice sentences... i was able to pick out some by the number of syllables/sentence pattern... I figure that between now and my Audio/Verbal session, I'll just play around with and pay attention to what I'm listening to and let the specialist tell me what exercises to practice on. I also want to practice speech because my voice feels weird to me... since surgery... need to email the surgeon's nurse about that...I wonder if I'm experiencing something that's a side effect from the surgery. My throat feels thick or something when I talk.

Also, when it was quiet, I heard something that sounded like music and was looking through my tabs to see where it was coming from and Gary told me it was the train... (about 1 to 2 blocks away)... later I heard it and verified it with my son...

When Indy shakes it sounds like pennies in a can.

One funny thing: my kids all figured out how to talk to me without using their voice. I don't know when ir why they developed this but it made for some interesting times in public... looked like I was having half a conversation. This kind of thing caused sibling fights because they didn't know someone was already speaking to me. Oops.  Now that I can hear, I caught my son doing that several times yesterday...

It's just fascinating... the different sounds and learning about the equipment, etc... I want to hear all the things and talk to all the people!

My oldest son came in from out of town as well and it was great seeing him.

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Monday, August 11, 2014
      ( 2:41 PM ) Jessica  
A few people have asked me if the cochlear implant would completely restore my hearing...  the answer is probably not and also, it won't be an immediate fix either.  When the implant is turned on, chances are that everything will sound weird at first. I'm not sure what level of weird it will be, but others have reported that they only hear beeps and are not able to recognize the sounnds as speech right away. Some have reported that they do recognize the sounds as speech, but everyone sounds like a cartoon character, like Mickey or Minnie Mouse, or like chipmunks.

It takes time for the brain to sort this out and turn it all into recognizable sound.

The people who have the best immediate or close to immediate results with cochlear implants are those who were late deafened and probably had their cochlear implants somewhat soon after losing their hearing.

I lost my hearing when I was around 2 and wore hearing aids from age 4 on.  When I was around 12 or 13, I was at camp and realized that I did not notice that the battery had gone dead, so I decided to stop wearing it on the right side. I tried one or two times later, but did not give it enough time to get used to it... everything was just too loud on that side and too confusing...

Anyway, I kind of fall half way between late deafened and born deaf...  I already knew how to talk when I lost my hearing (and sing) and had enough hearing with my hearing aid to be able to continue my language development and was also able to talk on the phone. I stopped talking on the phone a bit over 10 years ago because relay systems made phone calling easier... I guess this is kind of a use it or lose it sort of thing... and maybe with the CI, it will come back to me like riding a bicycle except there will be some sounds I have not heard in many years.

This will be interesting and hopefully knowing that it will be weird will be what I need to keep the frustrating aspects at bay...

What I'm trying to say in a roundabout sort of way, especially to those who know me: good hearing will take time and it probably  won't happen right away...

Thoughts about the surgery and recovery:

Last week, someone asked me what I thought people should know about surgery and recovery... I already had a list of possible things that could happen:

The usual aftereffects of surgery: dizzyness & nausea: I had this... the doctor should give you a pain medication and an anti-nausea medication... I did not need a lot of it and after about a week or maybe half a week, I only needed tylenol/acetiph.. however it is spelled. I threw up once. Totally unexpected, but I was glad I was in our room when it happened, ewww... this was not one of my "oh my gosh I am going to die" type of nausea attacks, but more like "burping feels SOOOO good"...

Numbness around the surgery site is normal. The tip of my ear still feels numb. I'm told it will take a while to go away and it's not that bad to me... others may be bothered by it more..

My voice felt weird & my throat felt sore... from the breathing tube. I missed knowing about this part.
My voice still feels weird because I don't hear the same way from my implanted ear... I don't know if this will resolve or not when the processors are off. It's not a big deal.

 Ringing/Tinnitus: I've always had a stream or waterfall and whooshing "air" in my head of varying intensity as long as I can remember. It wasn't as noticeable with my hearing aid. After surgery, it was louder, like Niagara Falls... with occasional beeps and bells. A few days ago I noticed it was quieter than before surgery. I even have moments of NO water sounds in my head and that was awesome... I could actually hear myself think!

Facial nerve paralysis: I did not have this complication, but people getting CI surgery need to be aware of this possibility...

Changes in taste: I didn't have this complication and this is another one people need to be aware of.

Enhancement of other senses or other ear: this seems to have happened to me: I seem to be lipreading better and also I am much more aware of the sounds in my right (non implanted) ear than I remember...

I was told to be careful about sneezing (mouth OPEN) and blowing my nose (gently!) and have not had problems with this as far as I know. It didn't hurt, but may affect the implant? I think my first sneeze was about half a week after surgery and it didn't hurt... blowing gently has not been a problem and if I think I'm going to sneeze, I try this, but it usually sneaks up on me.

The period between surgery and activation:

I've mostly been goofing off online and watching videos... I finished season 1 of The Fosters on Netflix last night.. freaky cliffhanger... maybe I'll go back to Orange is the New Black, but it doesn't grab me the same was as The Fosters, Switched at Birth and a few others...

I have some things to work on and will go and do them... I'm trying to decide what tapestry weaving project to do as well...probably the abstract on the big loom...

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Thursday, July 31, 2014
      ( 9:09 PM ) Jessica  
Well, I had the surgery yesterday and the doctor says it went well... gonna keep this short because it's almost time for my next dose of pain medicine. Here's a photo of my head wrap thingie:


I love the little red smiley.

More another time! :)

Edited to add: Happy Blogiversary... been blogging since 2002!! Never consistently & I'm happy with that...

And Happy Birthday to my wonderful sister, Carol!

And... Harry Potter... and everyone else whose birthday is today...

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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...


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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


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Welcome to Patchwork Girl's Rambling Warps blog... where I talk about just about anything from projects to just stuff to rants and whatever... I started blogging here on July 31st, 2002 and have been blogging on my website with Movable Type. I do not promise to blog regularly! I will blog when I feel like:

Blogging Without Obligation:

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