Glad to be back

[wendypal]

Hello everyone,
My name is Wendy and I have 4 kids. My youngest Sam (age 6) has sb- l4-l5
He walks with afo's, has 2 shunts, just recently had tethered cord surgery. He is such a happy, sweet child along with my other 3. Looking forward to being part of spina bifida connection once again. Really enjoyed it before and was sad when it was closed down.
Look forward to talking with you all.
Wendy P.

[Holly]

Welcome back! Glad you could rejoin us!

[Barb]

Hi Wendy! Welcome back!!!

[kali]

Hi Wendy
welcome back! looking foreward to getting to know you again
kali

[nanna]

Hello Wendy, Wow 4 children you must be busy. I wish your son all the best and hope he makes a good recovery. I have a new grandson who has SB. Do you mind me asking why your son has just had an op on his tethered cord, has he had one before?. My grandson had his at a day old. Is it a possibility he will need another when he is older.

[Dodger67]

Nanna
Wendy's post is almost a year old!!!

To answer your question in general terms: Yes tethered chord releases sometimes have to be done repeatedly, particularly while still growing but can also be required in adults.

[joybell322]

Hi, Nanna! My daughter is 6 now and has not yet needed the tethered cord surgery, Thank God! But I do know that they are keeping a close eye on her now, knowing that the surgery may be needed in her near future. What happens is, as they grow, the cord gets tangled in the scar tissue from the very first surgery. All SB kids have this, but they usually wait until it affects them adversely or they are in quite a bit of pain before doing the surgery. Best wishes for your grandson!

[Dodger67]

[quote=joybell322;2933] All SB kids have this... /quote]
Not true!
I don't.

[joybell322]

Okay, I may be wrong, have been before. But my daughter's neurosurgeon told me that all SB kids have a tethered cord to some extent. Many may not be affected by it, but all have it. My daughter has not been affected as of yet, and we are praying she will not be. I'm glad you have not had problems in that area. I hear it can be excruciatingly painful.

[Barb]

Dodger, that is interesting, I have been told the same thing as Joy...everyone has it but not all are affected by it. Interesting...

[Dodger67]

Ah! I see, so its not a simple yes/no condition.
Then I must be in the "not affected" category.
After my lesion was closed and it became clear that I don't have hc, I never saw a neurologist again - so nobody has ever taken another look at my chord/lesion.
"Ignorance is bliss..."

[Summer25]

I was also told that all people with sb has it. It just depends on if they have symptoms. I was also told by my ped neuro that they try not to do the surgery on a child that is already in a wheelchair. This came after my botched one and the neuro that did the surgery left due to another botched surgery he did. I was paralyzed from the chest down after it. Regained some feeling in my back, but that is about it. We were trying to see if my bladder issues were due to that. Come to find out they weren't and about 6 months later ended up with a bladder augmentation anyways. The other neuro also found out that there was no way possible that the neuro that did the surgery could tell I had tether cord because of rods in my back. My mom was told that he could see it.

Summer

[nanna]

Thanks everyone for your help. I realise we have a lot to learn yet, i suppose a little bit at a time is the best way to take it all in.