This bothers me

I was recently tracked down by an old friend via the internet. He googled my name and was able to “find” me. So out of curiousity, I googled my name and to my dismay and anger, some of my posts to the support group showed up. I don’t know about you but I often share very private, personal things about my AVM struggle within what I thought was the privacy and safety of the support group and I really don’t want that information available to anyone who googles my name. Is there any way we can get this stopped or any way to delete this info from google. I’m no computer whiz so I don’t know what to do. But this is just WRONG! Kimberly

Hi Kimberly

I'm sorry that this happened to you. Here are a few things that you can do that I just tried, so I know it will work.

I guess I knew that my posts could show up via google searches; I also post on a sailing website and accidentally, I've found posts that I've made on that public forum as well.

If you log on here, then go to the settings page. Under Profile, I suggest you change your name to Kim B or Soccer 5 Mom or something that doesn't tie to you. Then change your settings Under Privacy to either be seen by members or friends (whichever you prefer).

That should stop future posts from being available online to all. I do not know if like you change your name, if it will change all previous posts by you to the new name, or whether the old ones will exist under your name, then the new ones under the new name.

Unfortunately, any more you almost have to consider that anything you type on line could at some point be viewed by the general public.

As a habit, whenever I sign up for new stuff, I use Ron and then an initial of last name. I also don't put more detailed info than my email out there whenever possible.

I hope this helps. If any of us can assist further, pls ask.

Ron, KS

Guys, I just checked something and IT WORKS!

I registered under the name "Ron, KS". Just now, I went to Settings and changed by name to "Ron, Kansas" and SAVED the changes.

Now, when I look back at things I posted just minutes ago, all my old posts were changed to the NEW name.

So I'd recommend that any of you that are concerned about too much information out there, go change your name to a nickname, change your city state to some metro area near you, such as Kansas City for me (I don't live there by the way, but I'm currently sitting in my daugher's condo in KC).

I hope this helps. It's still possible that your old info lives in google somewhere, but a link to it once you've changed your name might lead to a broken link, which is almost as good as deleted.

Ron, KS or Kansas, now I gotta decide.

Been there done that,

What Ron said + go to

Settings / Privacy / and choose who you want to see your profile. "members only is fair" Some of your comments or any posts with your full name will continue to be visible via Google until Google indexes them and finds your new alias name.. Do this and give it a week or two and try to Google your name. If you still show up you can delete those comments that have not been indexed yet.

This is not a solution, given that the new and old names are linked, and that advanced google can search dead pages anyway. Even if this solution worked, individual solutions to this problem are a bad idea; new members and all those who haven’t read this post won’t know to make the changes. The site needs to close itself off to google searchability, however that is done. There’s information on here that could seriously affect people’s lives, and I think most of us posted in the belief that it was private.

Info from Google's Privacy FAQ

remove information from Google’s search results?

Like all search engines, Google is a reflection of the content and information publicly available on the Internet. Search engines do not have the ability to remove content directly from the Internet, so removing content from Google or another search engine would still leave the original content that exists on the Web. If you want to remove something from the Internet, your best bet is to contact the webmaster of the site and ask him or her to make a change. Once the content has been removed and Google’s search engine crawl has visited the page again, the information will no longer appear in Google’s search results. If you have an urgent removal request, you can also visit our help page for more information.

BTW if you posted your name you can delete it or change it.

Thanks for bringing up this topic, Kimberly. This decision to be searchable on Google is a tradeoff.

The pros: if you do a search for "AVM gamma knife leg" our web site comes up on the first page on Google. This is only possible if make the web site completely public. Being public means the content added by members can help many more people in the world searching for AVM help.

The cons: people can search for others by name and this web site may come up in Google.

We strongly feel that the pros outweigh the cons. However, we admit that privacy is a concern for some. We can minimize the cons by doing exactly what Ron said. It is not necessary to include your real name or your last name. In response to your message, we will include a message on the home page about Privacy that should resolve 99% of this problem.

Thank you for caring enough about other members to bring this up.


I never post anything, anywhere, on the Internet thinking it will be private. I automatically assume that it will not be private, because once it's put out there on the Internet, it is most likely going to be available through search - whether it's Google or another search engine or other search means.

Any information a person wants to keep private shouldn't be put on the Internet - period.

In my opinion, it's unfortunate we can't keep certain things, at least on some sites, private. But that is the nature of the Internet, and it's important to know that and keep it in mind when using it.

With that said, it is important to learn about and use whatever methods and tools are available to keep personal information as private as possible.

Thanks for that Kim. I Googled my name and yes there were things there that I have posted here and like you were not very happy about it. I do want to help and be there for other people with AVM as well as get support but some people out there will use this information in a different way. I have changed my name etc as Ron said.
So once again thank you and thank you Ron

Take care