im terrible blogger

sorry this took me so long to write, i've been neglecting this blog oops!
well after 3 months of wearing hearing aid my hearing deterotiate to the point that the sounds come in as vibrationn no sound at all so its offically dead now hah oh well, more reason to get CI in that ear damn it doctor (he wouldnt implant me for dumb reasons)
also I've heard about new nucleus 5 system, at first i hated it and send me into semi-panic mode that i might not be able to get implant for another 5-10 years until next generation after nucleus 5 comes out hopefully better designs, that or beg harder to my surgeon to implant me now this year while freedoms are still used UGH!! but after while i warmed up tiniest bit to the processor itself but still abhor the implant designs itself, come on square metal housing? the top edges causes slight discomfort for me already (its already being successfully treated with nortriptyline meds) now with 4 sharp angles edges, just what i need, more discomfort? why cant they make it tapered from center to edges or make it round? idiot manufracturer, so i dont know what to do just hope the clinical trial goes badly that they change the housing design or comes out with next generation less than 3-5 years or my doctor gives in and implant me right away damn it im back into semi-panic modes so see ya later

Post-Hearing Aid My Thought

So now after fairly sucessful trial with hearing aid I had moderately bit of dizziness woosh sensation in my head at the beginning but it goes away after long while so right now at this moment only FEW sounds trigger that but 80% other sounds that I can get with my residual hearing is fine no problem at all. 

Also one symptoms I dont think I've mentioned before, is achy around implant site sometimes it'll spread down to part of neck and little bit to the back of the head (only implanted side of the neck so left side) but its lways random and goes away after I wake up (18-24 hours)  then its gone and come back whenever without warning I think the reason is that surgeon might've not made it flush to the skull well enough for some reason maybe thin skull or oversensitivity skin/muscles around implant since I have thin skin could be anything,

 Also since I'm migraine sufferer it could be from that. Im trying out few medications to see what relieves migraine and hopefully fix the achy problem. 

I consider it mild most of time and sometimes moderate but never horrible or affect my mood/day. 

So I'm having 2nd thought about getting other ear implanted since I'm worried if I'll get same achy thing and also I dont want to go back disliking the music again because my fiance's all about music so it's not fun when he enjoy the music when I hated it with CI (but hearing aid bring in more bass sounds so now im back enjoying music as long its not too loud)

So we'll see maybe 5-15 years I'll change my mind again who know maybe there'll be longer array to get WHOLE cochlea to get ALL frequencies then I'll get it in a heartbeat (if surgeon will even implant it) but right now I'll wait

Hearing Aid Update

heres the update 

Pro:

* Heavy metal/Rock music sound much better

* More volume control to turn down if too loud (CI volume only lower by 10% difference pfft)

* Hearing more of the low frequency that im missing with CI

* If im tired of loud noise like restaurant, have headache or just want a quiet day but still have some sound I can just take off CI and wear just hearing aid.

* No surgery

* Comfortable , no pain like I have around implant site I get random achy feeling.

* Get some sound input in other ear so no one-sided feeling.  

Con:

* Cant hear the speech sounds clearly, its very muffled and missing sounds

* Not loud enough to match up volume-wise with CI when I want it to

* Feedback! (if I lean my head too close to something like arm of the couch it'll feedback)

* Earmold (plugged up feeling)

* Not covered by insurance (but VR may pay for it so we will see in little while)

* Some sounds sound very weird like light classical music sound like soft feedback ew 

* Increases the tinnitus issues but it doesnt bother me at all (only time it will bother me is if I cry my implanted ear will start ringing loud screaming horrible buzzing if I dont have processor on)

* At the most of time it doesnt work together like it will be CI hearing sounds then switch to hearing aid hearing sounds when different frequencies sounds is occuring all at once, it feel like someone is holding speaker to my ci ear then suddenly move it to my other ear its weird.

Bringing it back from the dead

Ok I'm sure you guys are puzzled by the title of the blog, I'm thinking about bringing back something we all thought it was over and buried.......
Hearing aid!
Well since I know surgeon won't implant my right ear until I speak well so I figured until then I should try hearing aid again since my CI's louder than hearing aid it might equalize the sound input so it don't feel whooshy and feel unbalanced.
I emailed audiologist about it but haven't received an reply yet. I will let you guys know what she said later.
I just want sound coming in right ear, I'm not too worried about speech clarity for right ear since I'm getting it from left.
We will see how that turn out.
Also I found info about recruitment it said good audiologist can work around it like theu does for CI and sensitive spot they turn off or lower one electrode. Same idea with hearing aid and recruitment spot. I should ask about that also I know low frequency make the issue with hearing aid worse and I looked up at oticon sumo dm the one I trial with before CI it said it put all the power toward low frequency (No wonder!) so I can ask to turn it into normal sound amplification or try different one.
Of course I will update on how it goes.
Wish me luck!

Sorry! Wayyyyy overdue update!

Hey everybody!
I'm so sorry for neglecting this blog! I had no idea what to say on here!
Umm what's new with me you might ask?
Well not much really, except I've decided I want to go bilateral for sure but when I asked surgeon about it and he came in room talking to me and I'm like "uhh write it down or slow down please" and he said "oh you don't understand me still?" I'm like "I do understand you but I can't reply by speaking" and he's like "oh you cant talk either?" what? Did he expect that the CI will miraclously restored my ability to listen and speak like hearing person? But anyways he said he want to order AVT therapy and he'll look for therapist that signs and that was 6 months ago! Still haven't heard anything from him ever since.
He said once I can listen and understand spoken language (I think I've came far enough? I can understand like 70-80% of what's being said if I know the subject if its only one person talking at a time toward me so I get extra help with lipreading.) And have ability to speak well (uhh? I think that's too much to ask for) then he will implant my other ear.
And he's saying things like I already got 80% of hearing with 1 implant (I disagree I feel like its 60% and its super annoying having one sided hearing and moving my head to hear something better and louder) and also new thing happened my nonimplanted ear ringing starting to get worse that sometime its so loud that its louder than my hearing with CI on in quiet evironment (only hear ac, water filter from aquarium, clock ticking tv volume on low etc) and if I lean my head against backside of lounge chair sound sounds muffled and quiet and if I sit on couch with my nonimplanted ear facing where tv is I will have hard time hearing tv clearly its frustrating and if I try to turn sensitivity up higher than 5 it'll hurt its too sensitive right now I think its because of my flu I'm having right now so I havent wore it for 2 weeks now and nobody respect my wish to talk little quieter or turn music down so I pop the coil off and in noisy evironment its too loud and I'm barely just starting to pick out few sounds from people at my table talking out of background noise so I rely heavily on lipreading which I sucked at it to start with..... I WANT MY BEAM PROGRAM BACK lol I miss it so much I totally regretted having it removed from my processor (brain fart that day perhaps?)
So I think it will really benefit me having other ear implanted since my nonimplanted ear's my better and most used ear growing up (dominant) it still is I get strong urges of wanting hear out of right side and it been almost a year now!
Plus I want to get rid of my residual hearing to get complete silent no loud screaming ringing in my ear lol.
And hearing in full surround sound not having to turn my head around to get better hearing UGH pain in the a........ butt (younger audience might be looking into this lol)
What do you suggest me to do? Because if he keep this expectation I'll never go bilateral. My mouth just don't cooperate with my brain maybe permament case of adult apraxia? Lol anyways
Also my bubblehead audiologist want me to learn to listen to multiple people talking at once (group setting) since I mastered at listening to one person speaking at a time while knowing the subject lol
Can hearing people even do that?
NO
Dumb!
Way too high of a expectation huh?

sorry late update

Well surgeon said he want me to get AV therapy first and whenever I get handle on speaking and listening skill he will do the other ear. Thats was it. Lol oh well.

Bilateral?

Well I've given this a LOT of an thoughts... heres my list of Pros and Cons. My appointment with surgeon to discuss about going bilateral is on July 9th 4:15 ET.

PROS
* Same design as other implant.
* Work together and sound same.
* SAFE!!!
* Good chance of right ear (dominant ear) doing a LOT better than left ear.
* Music MIGHT sound better.
* Easier time localizing where sound's coming from. (I do so poorly at that LOL)
* Been around for 20 years.
* Do better at listening in noisy evironment.
* Higher score in Speech Discrimination test.
* Extra ear!
* Feeling of balance and full sound experience.
* Low failure rate with freedom implant.
* Familiar design and device.
* Possibility of right ear can tolerate more decibels gain so it have lower decibels in audiogram than my left ear. (lower than 30 db)
* Upgradeable.
* very effective.
* If right ear did become dominant again, it could be good thing. (Doing better job at listening)
* Give my right ear a chance to become useful again.

CONS
* Miss out future new design, technology, stem cells, whatever crazy medical stuff for deafness.
* Possibility of losing the music appreciation for heavy metal and rock.
* Killing the residual hearing.
* Surgery risks.
* Achy incision for long while.
* Possibility of it overpowering my left ear and uses right ear as 'main ear'.
* Wearing heavy processor on both ears.


I'm thinking, since the design of the CI I have now is proved to be safe and effective, I'd rather to have safest technolgy that is very effective over the new fancy technology or medical stuff in the future that will improve hearing, more natural sounds and more depth in hearing.... I'm DEAF! I wouldn't know what is natural as long its clear and understandable I'd think thats natural and normal for me. I Just dont want to have all those scary unknown and unnecessary risks involved with brand new CI design, Its like throwing yourself in the unknown with potential of having all those risks like eyes twitches, overstimulation, failure, ribbon style could accidently slice the cochlea wall? just everything too new and risky in future with no long term study on it or anything. So I'm thinking let get what is available now since its safe plus its upgradeable. so what you think?

Oh hmph...

I decided to put CI back on and put it on 2 for volume and sensitivity yesterday so far no pain or any problems only slight discomfort on incision from the weight of processor thats all so I increased to 5 for both, so far, so good. Look like I only needed an break thats all. I still need new mapping some part of speech sound muffled and I cant hear fire alarm again. so I'll call to makes mapping appointment.
thanks for sending good thoughts for me :-)

Bad News

I haven't update anything since mainly because I was stuck. I didn't experience new sounds, heard people talking behind back or any of miraculous CI moments for a month and half now, and last 2 weeks I haven't wore my CI processor because I'm experiencing sharp pin-prickling sensation inside head if I hear certain sound like heavy metal, long exposure to loud noise, or whatever and few days later the sensitivity seem to increased so even on volume and sensitivity set on 2 it still hurt inside my ear and almost every night when I take CI off on day I wore them when I'm sensitive to sounds I get this headache-like pain located only left side of my head (implanted side) and during those 2 weeks break I get mild aching pain on the incision part that extend over the ear and the magnet spot.

Its extremely frustrating with all those discomfort I've been experiencing I don't know whats going on and on the top of them all my low score on listening test I posted while ago start to take toll on me I'm feeling depressed, stupid and wondering whats wrong with me, why isn't my score as high as all other bloggers I read about having high score on it after 3 months and everything, it just sucks. My surgeon isn't answering my emails, my audiologist took a week to reply and said she want to try put in new mapping in and see if it helps but she don't know about the pain so I'm waiting on surgeon's response in emails. UGH!

I hope it go away and get fixed soon so I can hear again, I dont want to miss the crickets sound everyone heard with CI out, and the fireworks, ocean waves crashing, seagulls, all summer sounds....

My 3 month Result!

Today Result
Word test NO lipreading= 20%

Sentence Test NO lipreading= 4%

Sentence test with lipreading= 79%

Before CI Result
Word test NO lipreading= 0%

Sentence test NO lipreading= 0%

Sentence test with lipreading= 42%


Hello everyone!
I got my 3 months post-activation test result from today on here.
See the blue line its shaped like an table so i got most of it on 30 decibel (yay passed my goal) and only 0-250 and 6000+ is on 40. I got most of the speech banana now whoo-hoo.
Also you notice that my score wasn't high but to me its something! Little improvement is better than none at all! Also my excuse for this score being low is that from losing my CI i had to use my back-up Mini BTE and it doesn't have accessory jack so I Couldn't do any of the rehab material like book on tape to practice listening. But now I got my new CI Processor today and its regular size so now i can use the jack to get back on rehabbing lol.

Skullchick's World

I want to Introduce my brand new blog called Skullchick's World from now and on when i update on anything that dont have to do with cochlear implant will go on there. So add this to your blog rolls.

http://skullchickworld.blogspot.com/

Vlog about CI and deaf community

I apologize if the cationing is bit fast I tried to keep up with the speed lol (I used my camera video instead of webcam, it took sooooo long to upload and its hard to caption so I am sticking to webcam from now and on lol)

Vlog number 2

Its about I quit my job last week

My First Vlog!

Im so sorry I couldnt figure out how to put html code on the blog to show you the vlog grrr but heres the link you can click to go and watch my vlog its 7 minutes long so cook some popcorn and enjoy watching my vlog! its captioned for people thats sign-impaired :-)

CI's offically an success!

I went to crowded bar last night for St. Patrick's Day. At first I was little bit overwhelmed by all noise, music and other people talking loudly I switched to Focused Listening but it didnt work well enough for my preference so I switched to Noise one and I can hear other people talking to me if I try hard enough and I'll understand some by listening and lipreading some as well and I didnt notice till next day that I actually had fun! For first time ever I had fun in hearing event in last almost 4 years now. because before CI I would sit and look down or play with my Sidekick instead of socializing because I was so afraid to ever had any chance of people trying to talk to me because I cant read lips without sound. So I was always extremely bored and feel left out and isolated, and depressed. For some of you loyal reader, you remember how I want CI to get my social life back... Well apparently its BACK! So its an success story! YAY!!!
Now I can't wait to go to other social events!

My Hair

heres my picture of Shaved hair, it been only 2 months. I know it look like its short and sparse, I have fine hair but the length is about an inch long now!

I got Real programs!

My appointment for mapping was couple days ago on the 11th of march, She got rid of raspy program one YAY and tweaked other one and lower volume and now its much much better!!!
Program 1 is plain program for everyday uses.
Program 2 is Noise, for any noisy evironment(ADRO).
Program 3 is Focused Listening, it cancvel out all background noise and only hear sound in front of me (BEAM).
Program 4 is School, its for any building that produce echo like school, cafeteria, mall, gym and etc.

There is couple more unfortunately I only remember Quiet program (whisper).
Coming soon is Music Appreciation Program! Its currently in study/experimental period.

I tried out audiobook, first chapter of Bridge to Terabithia Its surprisely easy with book in front of me! Not much else to update, sorry haha.

I sound like a guy!

I hated my new mapping, program 2 sound so raspy and my voice sound like a guy! Yuck! And program 1 was way too loud! so it was bad mapping ugh cant wait for other one on the 11th to change it!! Lol

Not much else to update I got bridge to teribithia audiobook and lemony snicket series I forgot which one lol but I lost my debit card! so next week when I get new card i'll buy cd player to start practicing listening :-)

That's all folk!

Over and out.

Sorry! Late Update!

*Yesterday I went to Washington DC with my fiance Jason to visit my friend Brady at Galladuet. Anyways we were walking around and when I heard soft sound and I stopped and looked puzzled and asked Jason "what am I hearing?" He replied "Birds" WOW awesome! lol I stopped there and listen to it some more I loved it! and when we walked to reflecting pool there was duck and seagulls in water so I heard quacking and cawing and I have to tell you duck sound soooo funny!!! I laughed everytime they quack haha. And when walking on way to the car and i heard sound and I said "what was that?" he said "train far behind you" I looked behind and wow it look like half mile away!

* Last friday Jason's mother invited Jason's sister Marian and her kids Maggie, 3 and Boe 8 months old. we all were chatting I just sit there quietly listening to them and only caught one word here and there lol they talk so fast! so Jason decided to stop them and asked them to say one word a time to me and they take turn and I got most right! yay! lol and Jason's stepdad Bill tickled Maggie to get her to laugh and Boe too their laugh is so cute and high pitched haha. and When Maggie attempted to talk to me to see if I really can hear her now with my CI and she took long time to want to test it out and see if its true haha she said "picture" and I smiled and she smiled too and say few other word like "gramma" "pop-pop" (naming people in the table lol) it was cute cuz her voice is soooo tiny of course because shes small but its funny to hear the 'smallness' of voice.

* Last thursday, I finally can hear fire alarm!!! I couldn't hear it at all with few programs I had from activation and 1st mapping I was little upset and worried cuz it was reason I got CI is to be able to hear important sound like fire alarm, emergency vehicle siren, baby/child crying, etc And after 2nd mapping with 2 program with all 22 electrodes turned on and my fiance burned something when cooking set alarm off while I was cleaning off table I heard it and I turned to see what it was and jason smiled and said "can you hear it now?" I couldn't stop smiling for like 15 min enjoying the fire alarm sound till they turn it off lol because it was first thing I tried to hear when I discovered that I'm really profoundly deaf and couldn't hear for first 2 week and now I FINALLY CAN!And same day there was big car accident in hwy I can hear cop, fire truck and ambulance sirens before coming in sight!

* I got CI moment last wednesday. It was my 2nd mapping appt. When we were done with mapping both program, we were just talking and she decided to stop signing and kept talking and it was totally unexpected but I actually understood about 85-90% of what she was saying!!!!!! WOW! I almost started to cry in middle of her talking to me (with lipreading and listening same time but to me that's GREAT and my breakthrough moment because whole my life its always fuzzy and only caught half of what person's saying and today WOW!! I'm over the moon right now I never thought I would be able to do that till like 6-12 months later but NOPE yay!!!

New Mapping Update!

Today I got new mapping for both my program, my program have 3 electrodes still turned off but my program 2 have all 22 turned on and both have new loudness and softness level. Its really different now. But so much better, with program 2 I can hear jason deep voice "rumble" its hard to describe but I finally hear it cuz thats his true voice I was so excited! haha

I got CI moment today also, I was at dining room looking out the back door because its snowing outside (isnt it soooo strange??? I got snow when I got out of surgery, I got snow when I got out activation and I got snow when I was done with 2nd mapping appointment!!) anyways I was there and I heard sound and I was thinking maybe its from my cat meowing, heard it again I was like "no, its from there where my fiance is" and 3rd time around I was positive jason's calling my name in laundry room, we're talking about 30 feet in different room! WOW! I went in to look at jason and he said 'good! You heard me!" Yay! lol