Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

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FEEDBACK

A forum to give us your ideas on how to make our community better.  Positive or negative input is welcome.  We want to know what you think.  It's our mission to continue improving Living with TN to make it the best on-line support community.

Location: subject-specific group
Members: 36
Latest Activity: Feb 23, 2013

Discussion Forum

First Feedback

Started by Phoebe. Last reply by Sheila W. Dec 17, 2011. 5 Replies

Hello, as a avid computer person this is a good group for me :)    If it is okay I am thinking about adding a link on my NONPROFIT  website to this site. The site is about "Achieving Mental Health…Continue

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Comment by Lily's Mommy on September 8, 2012 at 10:23am

She wasn't diagnosed at 18 months. She was showing the signs and symptoms at 18 months, if not a little younger. I thought I was losing my mind. I am sure the doctors thought the same thing about me. Lol! I ended up diagnosing her myself by the age of 3 yrs old. At that point Seattle Children's said it was out of their hands & that they couldn't help her. We found Dr Carson. Lily had her 1st MVD at the age of 3 1/2 yrs and the 2nd MVD at 4 yrs. It is still a surreal feeling that she actually gets to live life pain free. It's a blessing for sure!


Moderator
Comment by Richard A. "Red" Lawhern on September 8, 2012 at 7:58am

Agree with Tracy concerning your note, Lily.  Among our membership, Lily might be the youngest.  About a quarter of our members are under 30 years of age -- a major surprise to some professionals in the medical community. 

Comment by Scott Orn on September 7, 2012 at 9:31pm

what a great note Lily's Mommy! thanks for making everyone's day brighter.


Moderator
Comment by Tracy C from BC on September 7, 2012 at 9:02pm
Im so happy to hear you find LWTN helpful, it makes it all worth while when we hear comments like yours. :). I am so surprised to read your daughter was only 18 months at diag. Its great they were able to recognize it and help her.
Take care and keep posting,
Hugs and prayers ,

Tracy
Comment by Lily's Mommy on September 7, 2012 at 8:21pm

I have to say a huge thank you for having this site available! Without it, I would feel so lost. It helped us to really understand what our daughter was going thru prior to her 2 MVD's.  She began her Bilateral Trigeminal nightmare at only 18 months old. Dr Ben Carson said that she is the youngest patient to date that he has diagnosed and treated. Thank you so much!


Moderator
Comment by Richard A. "Red" Lawhern on November 28, 2011 at 7:53pm

Pat, I've just gone through a marathon of writing for the face pain info pages and Coping with Crisis here on site.  But that peak in activity is now past.  I shudder at the potential magnitude of research implied in your suggestions, but I may be able to step up to at least some parts of the need.  I agree that it certainly is a need.

Regards, Red


Moderator
Comment by Jackie on November 28, 2011 at 1:34pm

Tracy, you are too kind!


Moderator
Comment by Tracy C from BC on November 28, 2011 at 1:30pm

Actually Jackie, yours was way better ..... I'll copy and paste yours when needed  lol :)

 Thank you


Moderator
Comment by Jackie on November 28, 2011 at 1:12pm

Red, I am sure Tracy will agree as she has tried to inform Phoebe. All people logged on to LwTN who have not clicked on the green dot next to the man figure, at the page bottom right and turned it red will be shown as being on site, even if they are not looking at the chat page. If you do not want anyone to know you are on site click the green dot and make it red, you will not be able to open the chat page however. So to break it down

1.All members on site with a green dot show up in the chat room right side list

2.If you do not want anyone to know you are on site click the dot to make it red.

3.Just because members are logged in it does NOT mean they will be looking at the chat room

4. If you are desperate to gain attention please post a status on the front page asking for someone to join you in the Chat Room

5. If you hear a pinging noise when on site it is the sound of a comment dropping into the chat room

Hope this helps and sorry your answer vanished Tracy, I am pretty sure it would have been easier to understand than mine!


Moderator
Comment by Tracy C from BC on November 28, 2011 at 1:06pm

This isnt the first time my comments have been removed . .. i just let it slide but it happening to much.   It looks like members are having conversations with  themselves.  I have always been appropriate and am proud of it.   I want to be able to help.  Maybe we need to tighten admin again ....

 
 
 

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