How did you find Spina Bidifa Connection? [Archive] - Spina Bifida Connection Support Forum

wheeliedude07

01-19-2008, 05:00 PM

Google search. Even though I wasn't looking specifically for a forum.
I came across this board kinda like Dodger did. I was looking for something entirely different when this popped up! I actually was looking for message board forum software to give a site I run a redesign. What are the chances of THAT happening huh? LOL!

Have a great Saturday, friends!

Wheeliedude07, aka, Frankie

lolathechecker

01-19-2008, 07:42 PM

i wanted to find parents of other kids with sb, so i googled "spina bifida forum" and this was the first to pop up! i found another one, too, but the site wasnt set up as well as this one! good job guys!

Holly

01-20-2008, 01:25 PM

this was the first to pop up! Well, we are happy to hear that! lol..... Happy you like it here!

Spokie

01-21-2008, 06:30 AM

I gave up finding a decent site loooooong ago. Then just the other day I was chatting to a colleague, complaining about the struggle to get decent info on SB and the lack of associations in South Africa, when she urged me to give it another try - there must be a good chat group or forum somewhere out there, some parent would have taken the lead by now and started something - and guess what I found?!!

StrictNon-Conformist

01-22-2008, 12:17 AM

Of all things, I got the link from another poster (I presume a member of this forum) while answering a question on answer.yahoo.com where I replied to someone asking a question about spina bifida occulta where I suggested they look up tethered cord syndrome to get a better understanding of what they might have to deal with.

I don't know how severe it was in the case of the person asking the question because they didn't specify anything beyond back pain, which might/might not be meaningful, but I figured leading someone to useful information can't cause harm, and may even put them more mentally at ease. It's entirely possible that when they were told by their doctor, the doctor didn't state "But don't worry about it, a lot of people have it to this degree and it doesn't cause an issue." which seems to be the nature of doctors: they tell you something, fully aware of what it may mean in practice, but somehow they're thinking that but not explaining it to their patients, which then causes more stress than needed! Either that, or it seems some don't seem to explain enough detail when they really need to, to keep people from causing themselves worse situations... Makes me think that perhaps typical doctors are in collusion with psychologists/psychiatrists and have a quota with how many patients they drive into psychiatric conditions from worry and stress from not knowing ;)

Barb

01-22-2008, 08:18 PM

That makes me happy!
I gave up finding a decent site loooooong ago. Then just the other day I was chatting to a colleague, complaining about the struggle to get decent info on SB and the lack of associations in South Africa, when she urged me to give it another try - there must be a good chat group or forum somewhere out there, some parent would have taken the lead by now and started something - and guess what I found?!!

mommy2cnj

03-03-2008, 04:22 AM

I happened to be googling for information pertaining to schooling children w/ spina bifida and here we be! I've also enjoyed the other boards as well, Barb! Thanks to you, Holly, and all of you who post!! :)

angel

03-03-2008, 01:02 PM

I used google

swanson

03-09-2008, 04:08 AM

I know the owner :p

How did you all find us!!

through google my wife found it

lisamarie6801

05-01-2008, 02:58 PM

I believe I was "Googling" SB, wanting to study on Shyann's upcoming ACE surgery! Whatta Goldmine!!!:D

Gymp

11-06-2008, 02:34 PM

I had been googling around for some information on lower back aches that went from sciatica trrough to tethered cord with alot in between and eventually got a link to here.

I ended up seeing my GP about the extreme lower back pain and he doesn't think it's tethered cord.I had fallen off my ebike about two days before the pain started and the doc figures I had pinched a nerve or got some knotted muscles from the ebike incident.He said it's common that after an accident for the pain to show up a few days later.He also said if I get another episode where it's that bad he'll send me to get some xrays to have a look see.

Gymp

Kealey

12-30-2008, 12:19 PM

Decided I was sick of not being informed and having support. So I googled SB support and this was the first site on the list. Within reading 3 threads here I've discovered I'm not that much of a freak and other people have exactly the same issues. I also discovered I'm not that amazing and have not dified medical odds BAHAHAHA

Sheena51985

01-12-2009, 11:52 AM

pretty simply, I typed in Spina Bifida Support Forums on Google and this was one of the first ones to pop up. Glad I joined!!

jefwan

01-14-2009, 10:38 PM

I, too, was Googling something else (the surgery for bladder control that started in China). This site had a thread, and it popped up in my search; so here I am! And glad to be here.

Scott-V.

01-28-2009, 07:31 PM

Google Search! And thankful I found it!

dahliafaolan

01-28-2009, 11:38 PM

I was sick of the Spina Bifida Association website and I wanted something a bit more interactive so I googled and here I am!

Spiffynikki

02-13-2009, 05:59 AM

I was sick of the Spina Bifida Association website and I wanted something a bit more interactive so I googled and here I am!

That is how I found this place too!

Tzaphiel

02-13-2009, 09:29 AM

I was trying to find out more information on SB and found the thread on life expectancy. It caught my attention and I started reading it and others trying to learn more.

bcain

03-06-2009, 06:50 AM

I had given up for a while, The SBA site was not interactive, I didn't see a forum on it. I'm so glad to be here. It sure helps to have veteran SB people here, I value their perspective, and experience of life, I hope it helps me to help my daughter better, by hearing their perspectives. Thanks to all of you, for your help and willingness to share.

Holly

03-06-2009, 01:47 PM

Welcome everyone!

lisawoody

04-07-2009, 10:55 AM

We started surfing the net as soon as we had Erin (5 yrs ago) in New Zealand there are no support groups specificallyfor SB so when we found this, it was brilliant. I then started mynursing degree and didn't log on for quite a while, when I did you were gone (I was very sad, I missed you Barb)!!! Now your back, I have my degree and more time so now I'm extremely happy. If you need any help with administration from this side of the world give me a yell.

Donna

05-15-2009, 09:18 PM

Hi all just thort i would let you know that i came across this site by serching for some answers to my conduction.

cadon's mum

05-16-2009, 07:28 AM

I found this site trying to research into sbina bifida.

lilyv1

05-27-2009, 04:34 AM

hey everyone i found this site while i was looking for a site for my daughter she is 12 with sb i am looking for kids that can relate to her is there anyone here from southern ca, ?:

usolyfan

05-27-2009, 05:06 AM

Google search. Even though I wasn't looking specifically for a forum.

Me too! and I agree... people need to jump on the posting band wagon. Come on all, get to typing.

Barb

05-27-2009, 02:46 PM

Me too! and I agree... people need to jump on the posting band wagon. Come on all, get to typing.
Surprisingly (to me) this has actually become one of the busiest sb site out there, especially in terms of forums. I have been to a few (while this site was down) where you could really hear the crickets chirping. I love our community here.

Theresa

05-27-2009, 10:17 PM

I think this site is very busy - I can't keep up with all the reading! I googled and found this a year after Flynn was born, wish I had found it sooner and I think it should be a link from the SBA site. Someone once wrote on here that the SBA is focused on prevention, not how to help those living with SB. I agree. And I thank everyone for posting and sharing, this site has been a great help to me. It's nice to not be alone. And to make sure I'm not crazy!

Barb

05-27-2009, 11:41 PM

Dodger67

05-28-2009, 09:01 AM

What initially impressed me is that this site is not US-centric.
I used to use Yahoo Groups on a variety of topics and just got tired of the parochialism there.

LisaJoy

05-28-2009, 08:48 PM

I love the fact that this site has evolved into a truly international forum! It is really interesting to see a) how different various healthcare systems are and yet b) how much commonality we all have in our experiences with sb!

kidsrustx

05-29-2009, 03:40 PM

I found this site by googling "spina bifida".

I love that SBO and LMMC are treated as "real" spina bifida here. Our problems are not minimalized as they are on other spina bifida forums.

angel

05-29-2009, 05:25 PM

That was me who wrote that. That is why I started this site. No real place on the web for those of us who live with it to openly and honestly discuss it.

Having been a local board member years ago, I am just not that big of a fan of SBAA.

I agree with you barb i don't really care for the SBAA either. A lot of my friends from conference want me to go this year (i can't) and keep telling me to go to my local chapter and they would help me get there. I keep telling them I have not been a member of SBAA and have no intention of being. I can understand trying to stop it but they need to focus more on how to help the population that already have it!!

angel

Emelsu

07-20-2009, 02:25 AM

"Dodger67" made a comment on yahoo answers about spinabifidaconnection.com so I decided to check it out.

UNIV

08-03-2009, 10:40 AM

It was one of the external links on the bottom of the SP page at Wikipedia

dibsii

11-19-2009, 02:20 PM

Just wondering if anyone can help me. Can you tell me how to unsubscribe from the forum in general? I cannot find an 'unsubscribe' button. I have sent 2 emails to admin people, but haven't had a reply. TIA

valerie

11-19-2009, 10:00 PM

another member told me about this site and i must say its a great help, if it wasnt for people like ye our world would be a lot gloomier, thank you

abbysdad

11-20-2009, 12:22 AM

A friend told me about this site and I also saw it on wikipedia, not sure which came first. Couldn't have come at a better time, we had just got a pre-natal diagnosis. This community was just fantastic for replacing the stereotypes in my imagination with simple, manageable reality.

I know it's about the hundredth time I've said it, but thanks again Barb :-)

sweetwheels43

11-20-2009, 12:25 AM

I found this site when I was doing a search for shoes for AFO braces.
I have never seen a Spina Bifida site and I think this is what I am looking for.
As I get older I seem to have more problems from my Spina Bifida and don't know if this is normal?

Lifeisgood

11-20-2009, 03:15 AM

I think I found it somehow while surfing around for info on tethered spine and neurogenic bladder. Sure am glad I found this site!

nolda

11-20-2009, 03:58 AM

I found it when I was desperately searching for some info. about 'the better care' of my daughter; as her complains were increasing day by day and I was feeling helpless about it.

Lifeisgood

11-20-2009, 04:15 AM

How is she doing now Nolda?

nolda

11-20-2009, 04:46 AM

Yesterday we took her to new neurosergeon. He interacted very warmly and she felt good. She has that severe burning sensation which runs down from hip to toes. She says the pain is so severe and she swets a lot. Dr. has told her to do a L.S Spine MRI next Monday. But the sleeplessness and the sensitivity is just as it is, and thinking of taking her to a sleep disorder clinic. Yesterday itself we located one. Next is this, one at a time. Thank you very much for the concern, felt good:)

Lifeisgood

11-21-2009, 12:01 AM

I am glad to hear it. One step at a time. :)

Jill

12-13-2009, 03:06 AM

I googled. I googled madly looking for any signs of an active forum after we got the diagnosis in September, but this didn't come up. Yesterday I googled something that came up at our latest u/s and found a link to a thread.

LisaJoy

12-13-2009, 04:53 AM

Serendipity! Glad you found us, Jill.

Christine1970

01-14-2010, 02:34 AM

Google Search for people with Spina Bifida

Marie

check out my blog
http://www.journeywithsb.wordpress.com

ainemc

01-14-2010, 01:05 PM

I googled spina bifida, i think i found this site a week or two after my daughter was prenatally diagnosed. After reading all the facts and figures on the internet and the prognosis for babies with spina bifida i sure was glad to find a site to talk to people who really know what its like to live with it. It definately is the best thing on the web i have found regarding spina bifida. A big thank you to Barb for creating the site and im so grateful for all the support that ive found here. It has really made this experience alot easier.

Dee1971

02-12-2010, 07:52 AM

I think that I found this site though a site that was on tethered spine sydrome. I am so glad I did found this site as this site is so supportive for people waiting to find out if they do have it.
Dee

Dodger67

02-12-2010, 12:11 PM

This site is one of only three external links listed on the Wikipedia article on Spina bifida.
It is a very significant achievement because only the highest quality external links have a long term presence on Wikipedia.

Papillon

03-31-2010, 01:22 PM

A friend of mine found it and encouraged me to join. I'm so glad I did!!!

TinyItalian1969

05-31-2010, 06:35 PM

I know the owner :p

How did you all find us!!

I did a search for Spina Bifida and Tethered Cords. Hoping to find a chatroom to get info

JohnK

07-17-2010, 07:12 AM

Bing search for onfo on s.b.; Finding this forum was a happy accident!

Jo Ann

07-18-2010, 08:39 PM

I was googling for SB and found it.

n3rdchik

07-19-2010, 12:30 AM

I googled for "lipomyelomeningocele" and this site popped up.... sooo glad, too:Banane21:

apack1999

11-27-2010, 11:03 PM

Google search. Even though I wasn't looking specifically for a forum.

Like Dodger and many of the others. I was just looking for information about Spina Bifida and found the forum on google. I love it because it gives so much great information! :) I like being able to chat with others going through the same thing.

Piglet

01-07-2011, 07:53 AM

Like Dodger and many of the others. I was just looking for information about Spina Bifida and found the forum on google. I love it because it gives so much great information! :) I like being able to chat with others going through the same thing.

Found the site after my son arrived when trawling the web for days, nights, weeks (obviously I wasnt reading properly!) but SOOOOOOO glad I found the site - its fabulous and I actually check the site more often then Fbook now!! Big thank you to you all xx:dance2:

Dollface

05-17-2011, 03:20 PM

I hadn't ever somehow noticed this site when googling but I was mentioning to some people on another forum that I really have been feeling like I've got nobody to talk to and I'm becoming overwhelmed. So one of them found the site and linked me to it!

Kent T

07-10-2011, 03:43 AM

Found you by Google. Was looking for answers for brace information for myself and our adopted little toddler. Lurked and read the forums for about 3 weeks and decided to join here. May have the record for most family members with SB and clubfeet here on the forum. All 4 of us have SB. Logistics are a tricky matter. Barb, thanks for a friendly and helpful forum which I love.