Author Topic: Up to now I totally missed this but...  (Read 3863 times)

G_Man

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Up to now I totally missed this but...
« on: August 19, 2012, 10:25:27 pm »
Hello fellow forum folks.  This never really dawned on me before but tonight I read the thread about David's book "Hell in my Head".  I decided to do a google search to see what else came up other than Amazon.  What I noticed is that a link came up back to the forum post.
I just wanted to point out to everyone that this forum is indexed on the internet.  For some reason I had some sense of privacy up until now.  Although I haven't given away the secret recipe for mom's pasta sauce I will be a little more careful going forward and may even remove my pic.  I'm not ashamed of my AN, quite the contrary.  I just feel I want to control who I tell about it.  I don't want the whole world to be able to stumble on it. 
G_man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

ppearl214

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Re: Up to now I totally missed this but...
« Reply #1 on: August 20, 2012, 05:00:23 am »
Welcome to the internet! :)  Yep.... you can Google yourself, etc.... and note... this is why, all the Admins and Mods here to all we can to help protect your safety.  As noted, the ANA Forum Netiquettes also note that no personal information is allowed to be posted in any discussion/thread (ie: email addresses, etc). We don't do this to be a noodge, but for your own peronsal online safety.

Always be safe on the internet... because as you noted.. you never know.....

Be safe all!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: Up to now I totally missed this but...
« Reply #2 on: August 20, 2012, 07:31:40 am »
Glen ~

Most folks are well aware that anything we post on the internet - on any website forum - is 'public'.  As Phyl stated, that's why we try to keep members 'personal' information, such as e-mail addresses, telephone numbers, etc off the public forums.  It's a security issue.  Aside from not posting that kind of information and the use of 'screen names' to protect our anonymity, I don't consider it risky to post general information about myself and/or my AN experiences.  I post on various internet boards  - some political - and avoid posting anything libelous or defamatory.  I write pretty much the way I talk.  Because I have nothing to hide or be ashamed about, I have no qualms about posting a recent photo with my posts.  I think doing so gives my messages a slightly more 'personalized' flavor.  However, 15 years ago, when I first discovered the internet - and discussion forums - I was very cautious about divulging anything I considered even slightly 'personal'.  Obviously, I've changed my mind to some extent, although, like you Glen, I'm not giving away any family secrets.  :D

In the final analysis, we each offer as much 'personal' info as we're comfortable with, never forgetting that everything we post (that gets by the moderators) is public, not private.

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

rupert

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Re: Up to now I totally missed this but...
« Reply #3 on: August 20, 2012, 04:22:01 pm »
Noodge??? ;D

mindyandy

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Re: Up to now I totally missed this but...
« Reply #4 on: August 21, 2012, 05:42:17 am »
I just have to say that I am thankful you can google and find this forum. People who are newly diagnosed are searching for answers and people who understand what they are going through. This a place to share experiences and talk. Like Phyl and Jim mentioned you don't post anything that would jeopardize your privacy ex:email, phone number, etc. I don't mind posting a picture for those on this forum or others to see. I look at it this way....how many people who are not diagnosed with an acoustic neuroma is going to google for it?? LOL
This is my 2 cents worth  ;D keep the change  ;)

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

leapyrtwins

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Re: Up to now I totally missed this but...
« Reply #5 on: August 24, 2012, 05:47:46 pm »
I discovered this about 2 years ago when someone at the HLAA (Hearing Loss Association of America) asked me if they could share one of my posts from the Forum with their members.

It's the one where I compared the Cochlear BP100 to the Oticon Ponto Pro, before ultimately choosing the BP100.

Had no idea where she found it, until she told me she found it in a web search.

Who knew?

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways