I had not talked on the telephone for 3 years!
Posted by: Anne on: November 24, 2008
I am late deafened. I grew up with good hearing in one ear, but then that got bad at the end of 2005, but I could still hear some sounds… but could not read lips, sign, or understand spoken speech. I have Neurofibromatosis Type 2. I became completely deaf in Spring of 2007, at age 19… my world became completely silent! When the doctors removed that tumor, I also got an ABI. So, I’ve had my ABI for a little over a year now, but I had not talked on telephone since … 3 years ago! I just got the Freedom sound processor for my ABI last week. I thought it sounds weird but then noticed i was actually understanding more speech. (I had SPrint – body-worn-processor since activation in June 2007)
I grew up talking on the phone. in left ear only. I LOVED TALKING ON THE PHONE!!! My best bud and I could talk for hours, about shopping, boys… anything, to procrastinate on that homework! Then I stopped talking on the phone 3 years ago, because I could not understand anything they said to me… frustrating!
I learned to accept this. I knew I’d probably never talk on telephone again. The doctor told me that MOST of the ABI-recipients can’t understand much speech without lipreading. … Well, I am the girl that MOST of the time- does what MOST people (that I know) think would be MOST – impossible.
I called my mom on cell phone from hardware store today! We were talking about which size long light bulb thing to get… thought it was 14, but it that doesn’t exist, so it had to be 12 or 15. It was actually 12 length, and to get 4 of them.
Then I called my friend from house phone! We talked about her being lazy, watching tv, when she needs to study, because she has test tomorrow. …and that break is boring, because its been raining all day, here… and there! And she asked about what I’d been doing all week (my break schedule is different from her
’s because we go to different colleges). She asked about my new ABI sound processor…. because I had not talked to her on the phone since 3 years ago!
I understood most of what they said. Asked for a few repeats and sort of tried to control the conversation…. but Emily is talking much more random, than my mom.
9 Responses to "I had not talked on the telephone for 3 years!"
December 26, 2008 at 12:39 pm
Oh, I’m tired. Need to go to bed! I have stupid MRi tomorrow morning! [of my leg. running injury overuse, probably] blah! but i saw this! (exciting! another nf2er and not lame blog spam!) Anyways, its hard to describe it all. at first it was REALLY WEIRD! the sounds were horrible, but they told me id improve if i continued to practice. (i didnt really believe that!)…. but in just over a year, i’m scoring “in range with CI-users”, haha, and even can talk on the phone a little!
I would say… honestly… do not “EXPECT” to be chatting on the phone, at least not any time soon! and don’t expect to benefit from sounds, when not also have lip-reading (thats when i understand the most, when quiet enviroment, good speaker, can see face, and hear with abi.) yes, i’ve progressed to understanding more and more than before, but… I had NEVER expected to talk on the phone again! really, i thought that finished in fall of 2005! I use some practice material online too, like http://www.hearingjourney.com (“Listening Room”) and there is a site that is free practice materiels for ESL students, and a bunch of others. (no real point in you knowing those right now, since u cant hear it.)
good luck with your ABI and God Bless!
Merry [late] Christmas! (or I could say “new black friday” as yahoo is calling it!)
January 6, 2009 at 1:47 am
I was diagnosed with the NF2 at age 9 (about 1995 or so.) also. it was when they discovered that i was already functionally deaf in one ear (perfect in the other). I dont remember hearing in that ear, but i guess its hard to tell for sure. it was gone by age 9, when i had surgery to save the facial motor nerve, where the tumor had suddenly entacted itself to the nerve. i got my ABI at 1ge 19 in 2007, a year after started learning sign language. im not fluent at ASL, but i know a good bit, and go to a school with about 1,100 deaf / hard of hearing students, of the total 15,000 student population, so it is a part of my everyday life here, and all of the deaf students are different. some rely on listening with implants or hearing aids, and some only sign. i have also learned that the CI or ABI works different for every person. i think mine works pretty well and i wear it a lot. (hear me typing right now.) recently, i have discovered that i can understand a bit talking on the phone which is pretty cool! (dont expect that. it is rare and takes a lot of practice!)
basically, with mine… i can hear “10 sounds” (ten electrodes), but its really incredible. i know that does not sound like much, compared to normal 3,000 cochlea hairs… but it is!
i would suggest the ABI for late-deafened NF2 people but i also understand the Deaf-Culture view on the anti-CI, because of it messing with the culture and sign language.
probably you should speak with your doctor about what to do.
February 17, 2009 at 3:44 am
I had my surgery on Dec 29th. They removed a factial nerve sheath tumor and at that time, they implanted the ABI. They turned it on Feb 9th and so far so good. I am hearing sound. A lot of it seemed like kids opening presents on Christmas morning. Just rustling paper sounds. Over the span of last week I am starting to to differentiate some sounds. Back in November I met with the audiologist and she showed me the components of the ABI and also did a lip reading test. Ou of 10 sentences I managed to get two words correct. Last Friday I went in and got a tune on the ABI. She did another lip reading test and now I am getting 2 – 3 words per sentence correct. She was surprised at how well I am progressing. So, it appears I will be getting pretty good benefit out of the ABI. For some reason your comments section of your blog posts is hard to read. . The category menu covers half of the comments section.
February 17, 2009 at 4:15 am
Good luck with that! it takes a lot of patience and practice, so try to not give up! I know some friends with ABI who hardly use it, and the audiologist that i work with an hour a week here, says that she thinks my case is rare, she keeps on challenging me, making it harder, because she doesn’t know what i am capable of! Like she would hold a black cloth thing up covering mouth, and say sentences with common words! I don’t know what is wrong with the comments section, I can see the whole thing. try re-loading the page, and let me know if it is still messed up. I havn’t posted in a while, been busy, but saw the email about your comment. I gotta go to the gym! …been sitting at computer for past hour! By the way, out of curiosity… how many electrode sounds do you have on? I have 10. Do you have the Freedom processor? Its great, I got it in November. Did you do to HEI or somewhere else?
February 17, 2009 at 4:23 am
by the way, if you get sweat or humidity into the battery compartment… use the rechargeable batteries at those times (they are quicker to change and dont need so much air, like the call batteries need) I did that and still it was shutting off when I worked out and I just got “cochlear cordless model” (the “corded” kind is mainly for bilateral implants or kids that do dumb things like through an implant out a moving car window!) from gearforears.com , and it seems to help a lot.
February 17, 2009 at 8:37 pm
Okay, when I followed the link from the email notification I am able to see the comments, weird. I have the Freedom Nucleus or whatever. Basically just the bte speech processor etc. Not the body worn version. One thing I dont like is that I dont feel real comfortable with it staying secured to my head/ear. I worry that when I do something active like play golf etc that it will fall off. My audiologist said we can make an ear mold like on a hearing aid and that would help to secure it somewhat. We shall see. I did not go to HEI. It’s kind of a long story but mainly for two reasons. One is that I really like my doctors here in Dallas at UTsouthwestern. The first tumor which was on the auditory nerve on my right side was very large. About 4 centimeters. The neurosurgeon I see basically spent 15 hours removing this. He was careful not to damage the facial nerve. I just put a lot of faith and trust in him and the Otolaryngologist. The other reason for not going to HEI was that it was just the logistics of it all. Traveling out there for surgery, my family members wanting to be there for the surgery, traveling back and forth for adjusting the ABI. I talked to Steve Otto out there quite a bit about getting into the second round of the PABI study but in the end, I just didnt think it feasible having to travel back and forth. I guess also, I just wasnt ready. Just wasnt at a point where my mind was made up. Last year my neurosurgeon mentioned they had a new doctor in the Otolaryngology department and he was going to get an ABI program started here. They had to go through the process of being approved, getting the audiologists trained etc. This doctor had spent time at HEI and had implanted about 35-40 patients. So, it wasnt as if he was new to it. I actually was the first person to be implanted here in Dallas. I think there was a girl who was implanted the day after me. I actually have 16 channels that are active and turned on. You were right, it is a very weird sensation with the sound you first hear. I had been deaf for about 6 years. When they first started mapping the channels, I wasnt sure if I was hearing something or if it was just my head playing tricks on me. Of course, since they are stimulating the brain stem you also can get some twitching etc in other areas. I started to feel this strange sensation on the right side of my face around my eye/cheek. Then all of a sudden, I heard the sound. Right now, a lot of things sound the same. At times, it is overwhelming and you find yourself wanting to just shut it off. But I know that it is a process you have to go through. I think that once you stop depending on what you remember sounds to be like and start accepting and learning what sounds are now like, that is when you start to really benefit. The first day after activation, I probably drove my neighbor hear at work crazy. I just kept knocking on my desk so that I could hear the sound. 
February 17, 2009 at 10:53 pm
Well, i switched the blog layout thing, but not sure if that makes difference. ive used 3 or 4 different ones on here. i might switch it back later, kinda like the darker color background. whatever. yeah, I have the freedom too. I know some people who have broken it by falling off. when you take off hoodies / over-head jackets, be careful, or just take it of and put it back on, lol. sometimes i use the elasticy headbands to hold it more secure when i work out, but that probably looks kinda girl like, so you wouldnt want to do that! (unless its the kind made to keep ears warm or a bandana would do the same thing!) i dont have the ear mold part, but know a couple people with it like that. (because i go to RIT, we have like 1,500 deaf and hard of hearing students, which includes abound 300 or so people with cochlear implant[s]!!) ….dont switch to the body-worn one because of falling off issues! its a pain in the ass! LOL. that is funny about tapping on desk just to hear it, i guess ive done stuff like that! i was mostly deaf from dec. 05 to april 07, and then became completely deaf, and got abi turned on like 2 or 3 months later. maybe yours will work really well with 16, but ive heard that it doesnt make much of any difference after you get above 6 or 8. only reason i asked about HEI is bc that where i went, and continue to go fo r the follow-ups. its a pain to get out there, but oh well! (im from GA and go to school in NY. Dallas is much closer than where i am!!) i will go again next fall i think! I work with an audiologist at school but not on the mapping parts, and she knows steve otto, they even e-mail each other!
February 17, 2009 at 10:57 pm
thought what i typed sounded differnt from what i meant… i grew up deaf in right ear. the left got bad and could hear sound but not understand speech, and then that one became totally deaf from another surgery in 07 and got the ABI..
December 17, 2008 at 9:47 pm
Well first, congratulations on your ABI giving you some hearing back. I was diagnosed with NF2 in 1995. They did immediate surgery then on my right auditory nerve. I had roughly 105 hearing in that ear at the time but had good hearing in the left ear. In 1997 I started noticing a reduction in hearing in that ear so I got a hearing aid to prolong the inevitable. About 6 years ago my world went silent. On Decemember 29th I am due to have an ABI implanted and am excited, scared, curious. about what to expect when they activate the implant. What was it like for you? I realize that different patients have different experiences with the ABI but I am curious how the process has gone for you.