Author Topic: NF2 - 16 years later  (Read 2346 times)

Jeff

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NF2 - 16 years later
« on: June 09, 2017, 01:50:43 pm »
Hello,

I once frequented this board, but my participation has waned. I am quite busy, and fortunate to be so. :)

I was:

1. A father to a 2-year-old.
2. A middle school band instructor.
3. A participant in church choir.
4. A freelance trumpet player (occasionally).
5. A person with perfect hearing, who relied upon for my occupation.

I am:

1. Deaf without assistive device.
2. Very hard of hearing with my auditory brainstem implant.
3. Without benefit of balance mechanisms on either side.
4. Relatively acclimated to facial paralysis.
5. Retrained, gainfully and successfully employed.
6. Happy to be alive.
7. A better person because I've gone through this.

Wherever you are with your journey, I wish you the best. You can and will get through this.

Regards,

Jeff
« Last Edit: June 09, 2017, 03:28:57 pm by Jeff »
NF2
multiple AN surgeries
last surgery June 08

v357139

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Re: NF2 - 16 years later
« Reply #1 on: July 11, 2017, 07:57:19 pm »
Jeff,
Like you, I have not been here in a while.  Looks like you've been through alot.  And looks like you have the strength to see the positive.  That is so important, how we choose look at it.  And no matter what happens, how we look at it is our choice.  It really is.  Thank you for sharing your experience, and even more, your excellent positive outlook.  You are an inspiration, and an excellent example for us all.  I salute you.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

PBFight4SB

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Re: NF2 - 16 years later
« Reply #2 on: May 26, 2021, 02:12:09 pm »
Jeff,

So sorry on your condition and just stay as strong as you can which is the only choice.

I am looking for Auditory Brainstem Implant for my 18 yr kid who has bilateral tumors and lost hearing on one side, about to lose on other after the surgery.

How effective do you think ABI helped you? Also, are you having terrible balance problems (because, my son does too)?

Stay safe and healthy.

Jeff

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Re: NF2 - 16 years later
« Reply #3 on: May 26, 2021, 03:53:02 pm »
Hi there,

I will gladly share my thoughts. First, I am sorry that your son has to deal with this.

a. I cannot imagine life without my ABI. I had finished college and been working as a teacher for 10+ years when I was diagnosed, so my situation was different. But the ABI has helped me to continue to be gainfully employed.

b. Sound from an ABI is not like normal hearing. I have little speech recognition with sound alone. I cannot use a normal telephone. BUT, with lipreading combined with the sound I do hear, I do much better. Far from perfect, but definitely a huge difference.

c. I can hear simple things such as the chime when I leave the headlights on in my car. It sounds different, but I am learning to think about what I hear in context with what I might be hearing.

d. I am definitely balance impaired. I avoid walking in the dark and walking with bright light in my eyes. I don't know why, but that bothers me. I detest ice and snow. I have to be careful when turning around or changing directions quickly.

As you know, surgeries are not without risk. But I went back a year after catastrophic surgery just to get the ABI. And I am glad that I chose to do that.

I hope that this helps. Let me know if I can answer any other questions.

Jeff
NF2
multiple AN surgeries
last surgery June 08