How to Navigate the site

[Holly]

Are you new to the board? Need some help getting around? Here are a few basic tips to hopefully help you.

How do I start a new thread? (A thread is a new topic)
To start a new thread is very easy. Go to whatever section you with to start your thread in. Above all of the other threads on the left you will see this button http://spinabifidaconnection.com/images/devcafe/buttons/newthread.gif
Click it, type in your post, scroll down a bit and click Submit new thread.

How do I reply to a post?
Simply click http://spinabifidaconnection.com/images/devcafe/buttons/reply.gif at the end of any post, type your reply, then click Submit Reply. It's that easy!

How do I find today's new posts?
At the top center of your screen, you will see a "QUICK LINKS" button. If you click that you will see a drop down box with a whole heap of options you can play with. The very first one says "Today's Posts"

Can I search the Forum?
Yes you can! You can search posts based on a members User ID, specify words in a post or just in the title, and you can select to only have it look in certain forums. To access the search feature, click on the http://spinabifidaconnection.com/images/devcafe/misc/nav_search.gif link at the top of the page.


Can I send an email to a fellow SBC member?
Yes! If you wish to email another member, you can locate them several ways. You can click on http://spinabifidaconnection.com/images/devcafe/misc/nav_members.gif located at the top of the page or you can click on their user ID in any of there posts, then click send email to.

What is Private Messaging?
Private Messaging is sending messages to other members in private!

Sending Private Messages Private messages work a little bit like emails except you can only send them to registered SBC members. You can send a private message to a member several different ways. You basically get to the link the same way you send am email. (See Above) or you can click "Private Messages" on the top right side of your screen then click "Send New Message" on the left side of your screen. On the next screen you simply type in the User ID of the person you wish to message, type your message and hit send!

[Dorene]

Hello. I'm Dorene, a 47 year old adult with spina bifida. Just got your email and thought I'd check out the site. Thanks for your welcome, Barb. Will there be an area for adults with spina bifida?

[Holly]

Hi and welcome to SBC! The number of topics is currently very small. Please feel free to suggest topic categories here (http://spinabifidaconnection.com/showthread.php?t=1) and we will add them as the community grows!

[Barb]

Hello. I'm Dorene, a 47 year old adult with spina bifida. Just got your email and thought I'd check out the site. Thanks for your welcome, Barb. Will there be an area for adults with spina bifida?
We can certainly add one. That area was pretty popular on the old forum. I will try to get it done tomorrow. Before we made it so that only registered members could post or read in it since some of the adult conversations got a little 'sensitive'. I will probably do that again. Welcome!

[Barb]

I added this area this am. All registered members that are logged in should be able to see it and use it ;)

[Chillmaster]

I am 42 and was told I have SB two years ago. I am trying to get information about it because I have had a lot of complications and no answer. I have diabetics, hypertension, high cholestrol, nerve damage, osteoarithis, insomnia and recently can not control my bowels. I had paraylsis two years ago and they told me I had a stroke but reading about the SB I wonder if it was not that instead. Hope I can find members who have answers because I am founding it hard to cope with this know that I am on a walker.

[Dodger67]

Welcome!
A late diagnosis means by definition that you have SB occulta (meaning hidden).
I think you really should have a comprehensive neurological examination so that the extent of the damage can be clearly defined. Only then will it be possible to figure out what can and what cannot be done about it.

[sean]

Hello, I'm having trouble posting some pictures, I'm getting 'invalid album' and check for an invalid link, think I'm OK there, can you help? Thanks sean.

[Gymp]

Sean...
Click User CP (Top left) > Under Networking click Pictures and Albums > Click Add Album > Type in a name for your album then click submit > click on the top browse button and navigate to where your pictures are on your computer and add a pic and so on...

Gymp

[peacenchaos]

Hi, I am new here, and don't really know what I am looking for. I am 28 years old, and I just found out today (in a very abrupt manner while on the phone with my internist) that I have spina bifida. I don't quite know what it means. I have been researching it all day, and I do not like much what I have found.

I have been having back pain for a while now, my doctor insisting the whole time that it was from 'spastic muscles' and throwing pain killers at it. Finally, I asked him if he wouldn't just order a chest x-ray, to ease my mind (because I thought maybe it was a lung thing or some such thing). He agreed. I got a letter in the mail stating "Congratulation. Clear chest x-ray." The same day, I got a phone call from the doc's nurse, letting me know that while my lungs were fine, they were ordering a CT of my spine. I was worried, and wanted more information, but was given nothing.

I had my CT yesterday, and this morning received a letter that simply stated, "Will discuss results at next visit." I know I don't have another visit scheduled yet, because I was not supposed to see my doctor for another 3 weeks, for review of ADHD meds (another recent diagnosis). So, I called my doctor's office, spent 30 minutes holding, went through 2 receptionists before I got to the nurse, and then found myself speaking (much to my surprise) directly to my doctor!

He asked how I was feeling (fine, I guess)..then said "You have a congenital birth defect in your spine." I said, "Are you joking? It's a little late to be finding a birth defect." and he said "No, sorry." and I say, "Well, which one do I have, then?" and he says, "you have spina bifida." Just like that.

Yeah. I have horrible luck with my health lately. So much for spastic muscles. I don't know what I am looking for here. I have never heard of anyone being diagnosed with this at my age. I am not quite sure that I even believe yet that I have it. It hasn't sunk in yet. I am pretty healthy, I guess, aside from a recent liver problem and the ADHD. I work hard, and play hard on my women's softball team. I have no problem ambulating, really. My doc and I are looking into sleep studies for excessive daytime sleepiness, but that's about it.

I have an MRI scheduled for this coming Wednesday, but doc says that it is not likely that my 'defect' can be fixed. I hate that I don't get any information from him when I ask, but when he wants to drop a diagnosis on me, he just LAYS IT ON ME!! ugh.

Is there anyone here who has been diagnosed late (like, when you were already an adult?) I would really like to know... I don't know why. I guess I just don't know what to make of this.

Anyhow, that's me. If anyone can point me in the right direction about someone to ...i dunno... just talk to, I guess? That would be very helpful.

Thanks in advance.

:signs120:peacenchaos

[kidsrustx]

peacenchaos - It sounds like you have Spina Bifida Occulta. There are many forms of spina bifida. SBO is a "hidden" form. My son has this type. He wasn't diagnosed until he was nearly 13 years old. There are actually many levels of effects from SBO. A person with it can go there entire life with no problems from it. Or they can have severe effects (such as limp weakness, paralysis, bladder problems, bowel problems).

One of the most common problems with SBO is Tethered Cord Syndrome. It can cause back pain, leg weakness, bowel problems, bladder problems. More rare is a Spinal Lipoma, where there is a fatty tumor in the spinal column. Y son has both of these. Either of these defects can usually be detected on MRI and can usually be repaired by an experienced neurosurgeon.

You'll want to know the nature of your "defect" (Spina Bifida is basically a broad term for most spinal defects). You'll also want to know what level your defect is (each vertebrae are labeled with a letter and number. The cervial vertebrae (at the top) are T1, T2, etc. The Lumbar vertebrae are L1, L2, etc. and the Sacral vertebrae (tailbone area) are S1, S2, etc.). My son's defect is from the L3 to the S2.

Keep us posted.

www.caringbridge.org/visit/sethedmunds

[peacenchaos]

Thank you so much for the information. I feel quite lost with the whole thing as of yet. Hopefully, things will be clearer after my MRI.

I remember the doctor said something about the vertebrae not having formed completely on the T3 and T4? I think that was it. I hate this because I am usually very informed on things that are going on with me after talking to my doctors. If not, I can usually find any info I may need online! However, Spina Bifida, as you said, can describe a broad range of spine issues - so looking online didn't do anything but scare the heck out of me!

I hope to keep up on this forum and hopefully pick up vital information for future use...perhaps even get to know some nice folks here, too. I can't say that I have a lot to contribute, because I have no idea what I am dealing with yet... Either way, I will be here and I will keep you posted. I suppose I will lurk about the adults forum for a bit, and post any news or questions there.

Thank you for your reply. It really helped ease my mind a bit.
Have a great day!

peacenchaos - It sounds like you have Spina Bifida Occulta. There are many forms of spina bifida. SBO is a "hidden" form. My son has this type. He wasn't diagnosed until he was nearly 13 years old. There are actually many levels of effects from SBO. A person with it can go there entire life with no problems from it. Or they can have severe effects (such as limp weakness, paralysis, bladder problems, bowel problems).

One of the most common problems with SBO is Tethered Cord Syndrome. It can cause back pain, leg weakness, bowel problems, bladder problems. More rare is a Spinal Lipoma, where there is a fatty tumor in the spinal column. Y son has both of these. Either of these defects can usually be detected on MRI and can usually be repaired by an experienced neurosurgeon.

You'll want to know the nature of your "defect" (Spina Bifida is basically a broad term for most spinal defects). You'll also want to know what level your defect is (each vertebrae are labeled with a letter and number. The cervial vertebrae (at the top) are T1, T2, etc. The Lumbar vertebrae are L1, L2, etc. and the Sacral vertebrae (tailbone area) are S1, S2, etc.). My son's defect is from the L3 to the S2.

Keep us posted.

www.caringbridge.org/visit/sethedmunds

[sean]

G'day Gymp, confession, I am hopeless with computers. I have made dozens of attempts to get about 15 pics up. Have no idea how I fluked that one. I obviously can do it, just don't know how I did it, why no. 5 out of 15. Followed your instructions, keep getting invalid file, done all I can to validate files????
I have been having trouble with my PC, looking into it today. Looks to me like someone else is using my PC, can't lock in my password, reset every time.
Looked deep into the workings??? Computer wv1003, not me, has been using my PC.
All my security disapeared, I've come close to throwing it out the window.
Lost hours of written work GGRRRrrrrr!!! I'll get it sorted.
Can't stand the recorded messages when I call the service providers, need to give myself a break from it. I have an old Gov't revamped computer also I'm on slow, mind numbing dial up, feel very much at the end of the line waiting waiting waiting.

[Gymp]

Sean,when you get your computer in order and try to post pics again make sure they're jpegs (i forget what other file types are allowed).Make sure the picture isn't larger than 97KB's in size and it's within 600 by 600 pixels...

Dialup.....Ohhhhhhhhhh dear,I feel your pain!

Gymp

[Vorlina]

I'm having some trouble getting into the Adults section - apparently I'm not authorised for it. Is that something I can request (being 34, I think I'm just about adult...)

[Dodger67]

Hi Vorlina, welcome on board.
I'll send you a private message explaining how to get access.

[fangsonwheels85]

:signs116: my name is Danielle I'm 25 and was born with Spina Bifida Mylomeningecil so eager to meet you all I have been looking for a place to talk to people who understand what I go through in my life

[LisaJoy]

Hi, Danielle! Welcome aboard.

To join the Adults group, go to the User CP (left side of the brown toolbar), look down the left to Networking and under that, click on Group Memberships -- you'll see a button to check to join the adults group.