ANA Discussion Forum
General Category => NF2 => Topic started by: NF-2er on July 19, 2007, 10:22:53 pm
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Hi;
Re, CIs for those with NF-2, I miss the point. If the CI stimulates the cochlea's hair follicles, there is still an AN ( or damage ) on the 8th nerve somewhere which would be located more interiorly to the brain than the cochlea and blocking good impulse input.
If the tympanic membrane and ossicles are in good condition ( no otosclerosis ), why wouldn't natural vibration of these parts produced by a hearing aid stimulate the cochlea also?
NF-2 CI implant, inferior results must be produced by nerve damage.
Just thinking...Anyone on group have a CI?
NF-2er
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I think -early days is the answer
Basically the results for NF2s and implants
seem to be below normal ANs - and some docs express surprise
The theory is that the type of damage is different somehow
- an AN tends to compress and reduce blood supply
whereas with NF2 the tumour tends to grow through
the nerve which complicates matters still more
There is a newer method
Which plugs into the lower part of the brain
- but we really are talking under 20 worldwide
and the results are patchy to say the least
I think that the technology here will advance
50yrs in the next 5
So - early days ?
Best regards
Tony
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Hi Tony;
Thank you...
There is another type implant gathering attention, and it is a mid brain implant.
I've been looking for the URL again but can't seem to find the exact one.
Yes, I've no doubt most NF-2ers have extensive nerve damage as NF-2 ANs can impact and grow within the nerve unlike one with a unilateral AN which grows laterally to the nerve(s).
I was ordered a new hearing aid and FM system today. Am not ready to take the CI plunge, I guess.
May you be as well as can be...Are you still recovering?
Russ
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Yes - I`d confess to being at the edge of my savy here
but there are A.B.I.`s - and P.A.B.I.`s
Basically the later bypasses the bit that got damaged
There are some success stories but it is rare
- I think its at the edge of medical technology as well
I still hope for a blue-tooth type, completely wireless, solution
I think we are 5 yrs away but dont quote me
In terms of a "cure" I think gene therapy
will be a solution - if things are caught early enough
And - Well - yes, about as good as can be
Strong enough to do a 40 hr week - with a 4hr per day commute
But if you diet as well - ie down on the carbs
Dont be too surprised if you end up
bumping-into-doorways etc
Best Regards
Tony
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Hi Tony;
To my understanding, there are only about 300 successful ABI implantations in the world. There have been many failures so PABI theory of penetrating electrodes was tried. I believe it has proven itself a disappointment and am not even sure it still has FDA approval.
Hey; Great news you are working! I feel like a wimp as there are other NF-2ers are working but I know my routine all too well and it does not include reliable feelings of wellness.
Re, lowered carbs, you lost me on that one. Are you talking hypoglycemia as a result here?
Take care, Tony!!
Russ
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err yes - basically a low blood sugar level
seems much more critical - and serious
The low level warning signs give me about
20-30 mins before the balance goes "technical" on me
Its an easy fix (EAT NOW !)
- and it, helpfully, does tell me in advance...
But pre- op I could push it till my arms trembled
- if I did that now ...I doubt I could walk at all
(I guess one balance nerve ?)
Re back to work - only when you are ready
There are 100s on the list that went too soon
- and then took a setback - that made life harder than it might have to be
Best Regards
Tony