I'm new to the group and was wanting to get in contact with other parents that have a child with a tethered cord along with Spina Bifida. I have a 3 year old...
I'm looking for other parents in the Central KS area, to possibly start a support group for both the parents and siblings of a child with Spina Bifida. Let me...
I'm not sure how far this group is from you, but this is the SBAA local chapter in Kansas. If you contact them, they may have other names of people from your...
I had surgery 2 years ago to release my cord. Since that time things are getting worse. I am thinking about having surgery again, and I would like to have...
They sure sound like tethered cord symptoms, but unfortunately, there's no true way to tell for sure that that's what's causing your problems. Have you had a...
Hello, My name is Becki. I'm a 30 year old, single mother who has recently (within the last year) been diagnosed with the following conditions: Fibromyalgia, ...
Prior to surgery, have any adults used braces as a form of treatment? Most information I find is regarding children or teens. I'm asking because my doctor is...
My name is Leah, and my eighteen year old daughter has been having some bad back aches lately. She finally went to a doctor, who diagnosed her with SB Occulta....
Welcome Leah-- It does sound like your other child could have SB occulta as well. My daughter is 15 with a low-level myelomeningocele. When she was born, I...
This is an excerpt from a website I just checked out...... Apparently, the occulta can be evident on an x-ray, but I have always been under the impression that...
Hello, I am excited to be in this group and am anxious to hear about live chats and whatever else I might be able to partake in to help me learn more about......
Here is a link from the Spina Bifida association website (www.sbaa.org). This is a list of all of the publications they offer, including a couple on teens and...
Hello, I have a client with two children with Spina Bifida. I would like to surprise them with something special for Christmas. I was wondering if there are...
Are those bells ringing in your ears a sign of holiday cheer or a sign of too much stress? Don't let this Holiday Season slip by in a blur of over scheduling....
Hello, My brother (has sp) just turned 18 and is having a little trouble with the whole "becoming an adult, moving out, getting a job" thing. :) Does anyone...
I recently found out about this service the FDA provides. They have a website where you can join an email list to receive notices about: "Clinically important...
As the holiday's are fastly aproching us i just wanted to say Happy Holidays to you all and that each and every Family stay safe and Happy this Holiday season....
I'm 34, have myelomeningocele, but by some miracle can walk. I am married, and have three beautiful healthy boys: 13 yr old twins and an 11 yr old. I have had...
Hi Tracy-- I'm sorry to hear about your worsening condition. I have a 15 year old daughter with a low level myelo who also walks. We are the lucky ones,...
Hi Bobbie, Good thinking in your record-keeping. I wish my mom had done the same. I called her last night to find out more info, but she's out of town (I...
Happy New Year to everyone. I was wondering if it has happened that someone has had their cord untethered twice and the second untethering was successful in...
Hi Rachel, I just read your post, I hope Jacob and yourself is doing better. There is a group on yahoo that has lots of information on Chiari. My son, 22, was...
I was startled to see your msg there, as I was just going to post a question about tethered cord syndrome myself. I had tether cord release surgery in 1990,...
Hello, I'm in the market for a new wheelchair and currently I have one that folds in the middle of the seat( I hope that makes sense). I'm wondering what other...
I just thought I would come in and say hi and to say I hope everybody is having a good weekend and I hope everybody had a great holiday well if you would like...
Well, take this as you will, but my friend with SB had a sore in the same area (under his hip bone) - they tried the flap surgery. It didn't work. Well, it did...
Hi everyone I've been gone from this site for a long time. But today I decided to look around and see what I could find out. My son Austin is 8 yrs old and on...
Hi all.. i just joined today. my GF has had sb since she was born. she is 32. she complaines at times she wishes she was like everyone else around, and could...
