AN Information

[msuscottie]

When I was diagnosed back in 2004 I combed the Internet looking for informations on AN's and some of it was helpful, but I feel like I found the same info over and over again and outside of this one, many of the websites didn't offer the information I was looking for or answer any of the questions I had. Well, web design being a part-time hobby of mine, I was thinking of setting up a new AN website with a forum and everything else but offer some of the information & resources that are tough to find. We're all experts in one way or another on AN's, so I was hoping you could share with me what the ideal AN website would be for you? Maybe this site already has everything, but if not, I think it's important to give members of our AN family a place, much like this forum does.

Any suggestions on what you'd like to see on a site like this?

Thanks.

[russ]

Hello!

  My very first reaction is that the site would be email based and include a section on NF-2. I do have a personal theory if all lived to be 100, many more would be diagnosed NF-2. I feel it is underdiagnosed today and am happy the diagnostic criteria has evolved away from HAVING TO HAVE, BILATERAL ANs.

  The site would be well moderated so there is no fighting.

  It would be nice to have professional consultation or advice if needed.

  There would be no solicitation of biased patient web sites as in the original ANA online email list serve.

  The site would include some break down into tratment modalities to help the above.

  The sight would include some way to post off topic discussion so one might be able to kick back and talk about family, politics, the war, religious belief, etc. -That type area would be a challenge to moderate!

  I hope I haven't offered too many ideas. After 8 years on lists, one gains a feel for what works and what isn't helpful and even damaging to an ill person.

  Have a great night a please, if you want to try this and need/want help, let me know at russtoo@netscape.com I see MSN is a wide open playing field for an acoustic neuroma support group. I've thought of starting one there several times but seem to run short of energy.

  Russ

[nannettesea]

More positive info on RADIOSURGERY!  And a way to reach people who have symptoms but don't know about ANs.  How could we do that?  Somehow when people google hearing problems, have the ANA site come up?

Nan

[Sue]

If I had "googled" the right words I would have diagnosed myself before the doctors did!  I just was searching for tinnitus. I should have put in "ear fullness", but I didn't even know what to call it!  I didn't have facial numbness then...but maybe those two search words would have been enough to pull up information about AN's. I might have asked my doctor about it last summer, since HE didn't bring it up!!  Not TO bitter, huh???

[Larry]

Hi all,

I share your sentiments and around 6 weeks ago, I wrote to the moderator of this site and apart from expressing my appreciation of the site, I suggested an improvement which was to have a section called questions to ask which included surgery and radiation treatments. the questions would be sent through to the moderator and posted by a "professional" into aq separate folder. This way any newbies could go straight there. The question of what to ask seems to be a very popular one.

I recently got a response that said that they are currently reviewing the site.

I will set up a new thread that is more aptly titled so that the moderator can get our views.


laz