Author Topic: Re, nails. Are they edible?  (Read 3500 times)

nftwoed

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Re, nails. Are they edible?
« on: June 16, 2013, 09:07:23 am »
Hi;

   I really wish to vent about Drs. and their seeming inability/unwillingness to "think outside the box" when treating NF-2 pts. with small tumors; AKA; "Conservative Management".
   IMHO; I see a real lack of transparency on their parts. Most pts. swallow their 'lingo', hook, line, and sinker!
   Possibly the real truth is ( and they won't admit so ) is that they don't know what to do while the nerves involved are "being taken to lunch".
    It's easier for the Drs. to try treating the deaf NF-2 person than the still hearing person.
    I would like to congratulate Drs. Driscoll and Link of Mayo Clinic, Rochester on their "conservative management" Tx vs. "logical outcome" of an NF-2ers hearing. NOT! 

nftwoed

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Re: Re, nails. Are they edible?
« Reply #1 on: June 16, 2013, 09:33:32 am »
   Point being, if the tumor is small and intracanicular and there is already a minor hearing loss, the average pt. has about 4 years of speech recognition left. There needs to be intervention because even if the tumor volume is not increasing, damage is continuing in the cochlea and along the auditory nerve. Possibly as far as the cochlear nucleus of the brain stem. Given that scenario, a person cannot be expected to do well for very long even with the highly touted cochlear implant. Next stop: ABI.
   Dr Williams was thinking outside the box and looking at improving potential outcomes when he perfected FSR for AN at JHH. Sadly, this pioneer passed away. Dr. Lederman may have had his hand in the research also. Certainly, the trials, for good or bad.
   Needed, is a neurosugeon willing to step up to the plate and quit following status quo re, AN Tx ( Conservative Management ). I guess, in a way, Dr. Shahinian has tried something different with fair result.

nftwoed

  • Guest
Re: Re, nails. Are they edible?
« Reply #2 on: June 19, 2013, 09:34:48 am »
Hi;

   Of course if an NF-2er is told surgical intervention gives them about a 50% chance of retaining hearing. Doing nothing ( watch and wait ) eventually will lead to total deafness, or 100% chance. It seems to me removing/radiating a small AN BEFORE there's a lot of nerve involvement should be the Tx of choice, not, 'watch and wait'. Watch and wait for what?? Watching hearing decline each audiogram is depressing! One may have in booth speech discrimination for a time, but "real world" hearing is gone in 4 or 5 years as even if the AN didn't grow, nerve and cochlear nerve damage continue.
   Again; Drs need to quit playing mathematics! The logical outcome of an NF-2 mediated tumor IS deafness!
   Comments here do not apply to single tumors as nerves are pushed toward the tumor capsule surface and not invaded as in NF-2. I'm reminded 6% of those who develop 1 tumor, will go on to develop a contralateral tumor, AKA; NF-2

Chances3

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  • Posts: 266
Re: Re, nails. Are they edible?
« Reply #3 on: June 19, 2013, 11:02:02 am »
Hi Nftwoed,

I love your posts, and I congratulate you on saying something here that a lot of other people really want to say.  I think the reason people go into the "wait and watch" is because a lot of people are frightened of surgery.  I had a small tumor, and I dived right into surgery, my hearing was saved, I'm very grateful for that.

 


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