Acoustic Neuroma Patient Archive

[arizonajack]

I just came across this website:

http://www.anarchive.org/

Some of you might have seen it before. I searched the forums but didn't find any mention of the site.

It's one more source of lots of information in one place.

Draw your own conclusions.

[nftwoed]

Hi AJ;

   Originally, the ANArchives were a very clever way to attempt associating a pt. driven and written website to the actual ANA in hope of giving the site archive greater respect. In several years past, I heard a couple rumors re, the archive and ANA. I'm surprised the ANA didn't claim copy right infringement!
   If one reviews it carefully, however, they will find it is heavily biased toward radiation, and is written ( with the exception of carefully chosen interviews ) by AN pts.
   As an NF-2 pt, I would not direct another NF-2 pt. to trust it's accuracy.
   The archive originator ( Dina Goldin ) has taken pt. email from the old ANA listserve ( pre 2005 ) and altered surgical stories to make them sound scary. I email regularly with one such person today.
   I wouldn't say the archive is a total wash, however, as has some truthful statements and good hints.

[robinb]

Jack-

I had found this site when I was doing my research and found it helpful. Just as the ANA site and discussion forum, many posts are peoples personal stories, told from their perspective. The archive site does prominently say:

Welcome to our informational web site for Acoustic Neuroma (Vestibular Schwannoma) patients, dedicated to providing you with information, advice, and stories to help make informed decisions regarding your treatment options and other Acoustic Neuroma management issues.

Acoustic Neuroma is a double-edged sword.  On the one hand, the expected outcome from Acoustic Neuroma treatment really depends on the choice of treatment and the experience of the team. The outcomes range from permanent disability to no complications whatsoever. A good outcome is never guaranteed; all we Acoustic Neuroma patients can do is try to increase our odds by choosing our treatment from an informed viewpoint. On the other hand, there really are NO Acoustic Neuroma specialists that can give you accurate up-to-date information for all options. You MUST see the provider of each type of treatment separately,  have each one give you their statistics and their expectations for your outcome, then make up your mind yourself.