tigersharkdude

After a number of months of talking with the NF foundation (my mother talks to them), I may be getting my ABI through a donation from the NF foundation. That makes me happy to know that I may soon (within a year) be getting a portion of my hearing back

Just thought I would share the good news

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Deafness

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Deb1hd

wtg... I'm happy for you

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Left ear
Implanted 12-28-2010
Nucleus 5
Activated 1-20-11

Right Ear
Profound hearing loss

DeafDavidsMom

Congratulations, that is awesome! What is NF?

Bottesini

Neurofibromatosis (commonly abbreviated NF, also known as von Reklinghausen disease) is a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be benign or may cause serious damage by compressing nerves and other tissues. The disorder affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Cellular elements from these cell types proliferate excessively throughout the body forming tumors

Neurofibromatosis - Wikipedia, the free encyclopedia

Type 2 runs in my husband's family.

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deafbajagal

I'm learning about the ABI now. Keep us posted. Good luck with everything.

deafskeptic

Good luck with it.

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Left ear implanted with Med-El on April 24 2007.
Activated on May 9th.
Upgraded to Opus 2 9/10/2010
Think Pink.
FREE JILLIO!

inmate23

hope everything goes well

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Please remeber I have audio processing disorder

i use asl rochester method or pop or oral

tigersharkdude

I have type 2 also.

Thanks for all of the support peeps.

And for those of you wondering why I cant use the CI. The CI works with a "living" organ. I need an ABI because...when the tumor is removed it will "kill" the organ, therefore a CI would be uselss. An ABI bypasses the cochlea and goes directly to the brainstem (auditory brainstem implant--ABI)

If anybody has any info. about the ABI that would be great

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krazykatkitty

Good luck

Hohtopics

That's good. One step at a time. Good luck!

tigersharkdude

UPDATE:

Got a call last week. The woman that spoke with my mom told us to be at Vanderbilt on that friday. Good news. I will be having my surgery to remove the tumor from my left audio nerve around the end of april, and a month or two after I will be having the second surgery to implant the ABI. Really hoping for the best here. Hoping to get some of my hearing back.

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Miss-Delectable

Good luck with the surgery, tigersharkdude.

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"Walking with a friend in the dark is better than walking alone in the light."
- Helen Keller

Hohtopics

Best of luck with your surgery tigersharkdude.

cdmeggers

good luck with the surgeries!

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My Ear Blog
Advanced Bionics BEA Volunteer Mentor

tigersharkdude

Thanks for the comments peeps

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bbaseballboy123

Your gonna love the harmony, I am loving my left, my right... err well the ABI recently broke lol. But I loved it when it was working!

Good luck dud

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Deaf and Smart. Business Major at RIT. Have Bi-lateral cochlear implants. But know ASL as well.

Working on a new project that will benefit deaf peeps

lovezebras

He is getting an ABI not an AB ..ABI is audio brainstem implant

abi

tigersharkdude

Also got some REALLY good news today. The surgeon who will be implanting the ABI is a specialist from California (he is supposed to have done more ABI implants than any other doctor). At least it eased me to know that I will have a very knowledgeable doctor doing the surgery and not someone who has never placed one of the implants

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Bottesini

I am really interested what you will think of it when it is turned on. My husband's cousin with NF2 decided not to do it, but I wonder if you will think it is really great.

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bbaseballboy123

ah, i assumed Advance Bionics Implant. lol, well either way, GOOD LUCK!

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Deaf and Smart. Business Major at RIT. Have Bi-lateral cochlear implants. But know ASL as well.

Working on a new project that will benefit deaf peeps

tigersharkdude

if you dont mind me asking, do you know why he decided not to go with it?

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Bottesini

It all came in the Christmas letter from his sister-in-law. A very odd family.

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gamesrubylove

It takes a while to get used to.. but worked great for me

gamesrubylove

.

dlandsberger

Sounds like good news! What sort of info are you looking for about the ABI? I know a moderate amount about the various flavors of ABI, but work in the lab with a full time ABI audiologist.

tigersharkdude

I was supposed to meet with a few doctors from california the friday before last, but they ended up not being there. I was planning on asking them some questions.

A few things I was wanting to ask them:

What can I expect from the implant?
Is it possible to damage the implant from loud noised?
Will i be able to go swimming and fully submerge my head in water?

Im sure I have other questions, but I dont want to give you a laundry list of questions

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dlandsberger

1. What can you expect from the implant?
Do I recall that you are an NF2 patient? If so, NF2 patients typically find the ABI to be a useful aid to lipreading and can help them communicate but are not able to understand "open-set speech". Ie, you would still need to lip-read. There is a brand new exception to the rule. A surgeon in Europe has recently been implanting NF2 patients with ABIs of which about half can talk on the telephone successfully. We've done hundreds at the House Ear Institute and none of our NF2 patients have been that successful with an ABI. I think the surgeon's name was something like Bayer (not sure about that) and that he is based in Warsaw Poland (also not sure off the top of my head.) It is now a big question in the ABI community as to why he's getting better results.


2. Is it possible to damage the implant from loud noised?
No.

3. Will i be able to go swimming and fully submerge my head in water?
Yes, but not while wearing the external signal processor.

The ABI is basically a cochlear implant, except the electrodes are not in the cochlea but in the brainstem. The externals are the same. The internal package is the same. Only the electrode array is different (and performance with the device.)

David

inmate23

One of my m8s with NF2 can hear things like a baby crying across the room without looking but she is *star* user she had op in the usa

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Please remeber I have audio processing disorder

i use asl rochester method or pop or oral

tigersharkdude

UPDATE: Official first surgery date May 3rd

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tigersharkdude

first of 2 surgeries is tomorrow

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