Author Topic: 2 Years in the Chateau Deaf  (Read 4956 times)

Jeff

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2 Years in the Chateau Deaf
« on: March 29, 2009, 04:00:51 pm »
It is difficult to believe that it has been two years, but the anniversary is quickly approaching. For those who do not know me, you can read my tale by searching on this board. I won't go into details now, unless they are relevant. And, for those who are now dealing with a tumor, please understand that my experiences were far from normal. Even the very experienced Dr. Hitselberger said that "I was one of the toughest cases of his career."

I am now working full-time as a school librarian and technology instructor. This , frankly, is very difficult, namely because I am basically deaf and continue to be balance "challenged"(I think that some might describe me as unbalanced). But, I persevere. I am trying to work out better ways to teach given my condition.

My ABI (Auditory Brainstem Implant) has been a tremendous help to me. I have often said that I do not know how I functioned for 15 months without it.

The purpose of my post is to encourage those dealing with a tumor, treatment, or the issues that follow treatment. My word to you is: Keep fighting. The kind folks on this board encouraged me to explore the "new normal." Now I am trying to embrace it. I can't say that it is easy or enjoyable all of the time, but it is getting better. Whatever stage of this journey you are in, you can make it. Persevere. Hang in there. Things will improve. Please take care.

All the best,

Jeff ;D
NF2
multiple AN surgeries
last surgery June 08

sgerrard

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Re: 2 Years in the Chateau Deaf
« Reply #1 on: March 29, 2009, 05:57:37 pm »
My ABI (Auditory Brainstem Implant) has been a tremendous help to me. I have often said that I do not know how I functioned for 15 months without it.

Hi Jeff,

I would love to hear more about how the ABI worked out. What do you actually hear? Is that even the right word?

I do appreciate you posting your words of encouragement. Your perseverance is truly inspiring. Best wishes for year number 3.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Syl

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Re: 2 Years in the Chateau Deaf
« Reply #2 on: March 29, 2009, 06:14:20 pm »
Jeff:

Yes, your words are very inspiring.

I'd also like to learn more about your ABI.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Jeff

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Re: 2 Years in the Chateau Deaf
« Reply #3 on: April 01, 2009, 12:29:00 pm »
Thanks for your responses and kind words.

I do describe the ABI sounds as hearing, although the sounds are unlike normal hearing. First, I have to say that it is great just to hear any sound that relates to what is happening around me. Second, I hear very few different pitches. For example, if I plink on a piano, playing each note individually, I hear the same pitch for all of the notes. I can hear when the note begins, but all of the pitches sound the same. The sounds are hard to describe, but I guess that I would call them electronic sounding.

I can't really understand speech unless I am lip reading and listening. Using sound alone, it is very hard to distinguish what has been said. It is with this combination that I do the best. I think that I have likened what I hear to the teacher on the old Charlie Brown cartoons. I can hear syllables, but cannot understand words.

I posted a link to a simulation in one of my old posts. It is actually a simulation of CI sounds, but I remember what the 1 channel version sounded like and think that it is similar to what I hear. I haven't the time to find the post........sorry.

Anyway, thanks for asking.

Take care,

Jeff
NF2
multiple AN surgeries
last surgery June 08

Joef

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Re: 2 Years in the Chateau Deaf
« Reply #4 on: April 01, 2009, 01:08:10 pm »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Jeff

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Re: 2 Years in the Chateau Deaf
« Reply #5 on: April 02, 2009, 07:40:28 pm »
Yes, that's the one. And, as I remember it, my hearing sounds similar to the music examples using 4 channels. It's Johnny Cash singing, I think.
Thanks,
Jeff
NF2
multiple AN surgeries
last surgery June 08

russcape

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Re: 2 Years in the Chateau Deaf
« Reply #6 on: June 04, 2009, 01:31:10 pm »
   I've been asking around how people sound to themselves when they are speaking, and whether that's different than what an ABI user hears externally. Haven't read any replies from the NF-2 Crew.

   An Aud. told me when people can't hear themselves speak, in coming years, their speech oftentimes worsens. I don't know...

   It surely would be nice to have improved technology this area. But I wonder if the unit itself could stand improvement, or where the electrode patch is placed on the cochlear nucleus of the brain stem.

   PABI was a dismal failure to my knowledge. So too, mid brain implants.