Re: Growth and tethering

[Guest guest]

Hey all...If I already asked this, please ignore. My daughter's pediatric

neurosurgeon said that her constant retethering would stop (she retetheres due

to scar tissue) once she is fully grown. Clearly, there are all of you

adults out here with tethering issues requiring surgeries etc. Do you have any

idea why he would say such a thing? He said it is the stretching on the cord

that creates the problem and once she is fully grown that should no longer be

an issue.

thanks.

Randee

[Guest guest]

Kathy,

Thanks so much for your response which just makes great sense. I would

rather know reality than not be prepared for trauma down the road. It also may

give my daughter pause to consider certain activities such as snowboarding,

horseback riding. While the NSG said she is free to do whatever she wants, I

wonder if perhaps one should avoid those activities with a particularly high

likelihood of back injury.

Randee

[Guest guest]

kathy..you are a grand " e " friend. Thanks for that wise advice. Randee

[Guest guest]

Hey, Rick...Such wisdom from you and Kathy. Thanks. Randee

[Guest guest]

Randee, I agree with Kathy. Both my nsg and physiatrist (rehab doctor)

tell me to do what I want, assuming I can. I cant walk but I can ride a

bike (2 wheels), mono-ski, horseback therapy, kayak, and lots of other

things that people say I can not do. There IS life after disability, and

I am going to make the best of it. Let her experience life to the best

of her abilities as she wants.

Rick

DK Moulton said the following on 10/5/2006 4:02 PM:

> Hi

>

> My nsg told me the same thing - no limits on what I want to do or should do,

although I try to use common sense and also, my body just won't let me do

certain things anymore. My own opinion is this: If I were her age and knew I

had this condition (because I didn't know I had this condition until I was 36)

is that as much as it would kill me as a mom, I wouldn't let it stop her from

doing anything - not snowboarding, not horse back riding, not anything she

really, really wants to do. But, that's my opinion. I know how hard this would

be though - I have four children and I am so glad it's me that has this and not

them. But, given that I've had this since birth, have driven motorcycles,

skied, snowmobiled, gotten in snowmobile and motorcycle accidents, gave birth,

naturally to four children, been in multiple car accidents and done tons

in-between not knowing the risks I was taking each time, I am so glad I didn't

know I had this because I never would have experienced life as

> I wanted to or I would have always wondered in the back of my mind what

if....but - still, she has to live and as careful as she could be, she could

still trip over a phone line in a hallway and have it start decline (as it did

with me two months ago.)

>

> Kathy (Just my opinion...)

> Re: Growth and tethering

>

>

> Kathy,

> Thanks so much for your response which just makes great sense. I would

> rather know reality than not be prepared for trauma down the road. It also

may

> give my daughter pause to consider certain activities such as snowboarding,

> horseback riding. While the NSG said she is free to do whatever she wants, I

> wonder if perhaps one should avoid those activities with a particularly high

> likelihood of back injury.

>

> Randee

>

>

[Guest guest]

Hi Randee,

I too wish doctors would stop telling parents that once their child

has finished growing that there will be no more TCS problems.

I agree that once your daughter has reached her full heighth, she will

no longer be at risk of having her cord compromised by the stress of

growth spurts. But, she will still be tethered.

And not only can she again become symptomatic from trauma like a wreck

or fall as Kathy said, it can be just cummulative damage from life.

For me, there was nothing that happened when I started with TC

problems when I was in my 50s. There are others here like me. I think

there is one person who said she picked up a heavy load of laundry.

I grew up knowing that I had SB and with stable neurogolical

damage...my parents were told I had an unusual form of SB as it was

covered with skin (no surgery as a child)...I don't recall having any

new problems as I grew. But my disabilty didn't slow me down. I rode

horses, white canoed, cross country skied, earned a master's degree,

married and had two children via natural childbirth. Even tho I had

complications in my surgery back in 1997, doctors do not want to open

my dura again, and I continue to decline now, I don't live my life

worring about what will happen next. I have friend who tell me that

I'm the least handicapped person they know.

The key is to listen to your body and be sensitive to when it tells

you to stop. My parents never told me to avoid any activity; they were

willing to let me try anything, and for that I am most grateful.

Again, this is not to scare you, but I believe that knowledge is

power. That it helps you to be prepared for the future if you know

what bumps there might be in the road. But at the same time we need

to avoid focusing the the bad things that might happen, but rather on

the postive things that could be.

V

>cause problems especially if she has an impact that makes the spinal

>cord stretch beyond a healthy capacity (and I'm not a doctor or

>medical professional so please forgive my lack of technical words.)

[Guest guest]

Hi V. I treasure everyone's comments and will remind myself of them

as goes off on what will probably be an adventurous...or at

least...risk taking life ... For sure it has made me a better Mom since I

refuse to

battle over nonsense...and shouldn't we all make each day the best it can be

as we maneuver this gift called " life. " I don't know that I will stop praying

that this cord problem magically jump out of her and into me, though it is

becoming a bit psychotic...but I will watch her enjoy each day to the fullest

in whatever way she chooses...while holding my breath...and smiling.

Randee

[Guest guest]

Yes, . There has been a price to pay here too after each surgery. I am

glad that the NSG said " 3 " is enough and there would be no more unless there

were very serious functional deficits which, fortunately, there have not

been thus far. My daughter initially had pain but following each of the other

two surgeries there has been increasing, intermittent numbness in her legs,

private parts, and now in her arms. She had a total spine MRI today to see if

she is tethered at her neck. Yes, I would guess you are done growing in your

late 40's Alas, I am now going the other way and have lost an inch!!

Heck, I was only 5'2 " to start!!

Randee

[Guest guest]

Sumchyk was found muttering these words:

I can't imagine why he would say that. Every time I have detethering

surgery I have more scar tissue and my cord retethers. My first surgery

was when I was 47, my second was 48. I am pretty sure I've stopped growing

everything but scar tissue :-(

You may wonder why I would even bother to have the surgery. The first time

was because I had horrible pain and my cord was becoming compressed -- so

it was an emergency. The second time it was to undo the mess of the first

time and to relieve Chiari symptoms. Thankfully, it did. The bad news

however -- there was a price to be paid each time I had the surgery.

At the moment I have such an uncomfortable and embarassing issue I don't

even want to talk about it. But, I keep telling myself at least I can see,

at least I can still read.

> Hey all...If I already asked this, please ignore. My daughter's pediatric

> neurosurgeon said that her constant retethering would stop (she retetheres

due

> to scar tissue) once she is fully grown. Clearly, there are all of you

> adults out here with tethering issues requiring surgeries etc. Do you have

any

> idea why he would say such a thing? He said it is the stretching on the cord

> that creates the problem and once she is fully grown that should no longer be

> an issue.

>

> thanks.

> Randee

>

>

[Guest guest]

I agree with what everybody else had to say on this, but I

am going to explain it a bit differently. This is IMO, of course.

First of all, I don't know why they keep saying this either. I had thought

they had stopped, but it looks like there are still a few around who still

say this.

Problems with Tethered Cord can be life long. You may

or may not develop problems, with Tethered Cord, or

Retetherings........but the possiblity is always there. Retethering itself,

is almost unavoidable, to some extent

or another, no matter if you have the Surgery at 8, 22 or 50.......Scar

Tissue still forms, which opens up the possiblity of it laying down on the

Spinal Cord and Nerves.

During Growth Spurts there does appear to be a higher chance of it affecting

a Tethered Cord and causing Symptoms, in those times. I personally didn't

have a problem with Growth Spurts and Symptoms.

So yes, Growing can put alot of stress on a Tethered Cord.........but there

are still stresses put on the Cord after you stop growing, maybe it is less,

but still stresses, and it can take it's toll. Such as bending, twisting and

everyday stuff like that, and extras that we sometimes put ourselves

through, which can aggervate a Tethered Cord. But in saying that though, we

can't stop living our lives.

Hope that helps..........I guess I just ended up saying what everybody else

did.

Me

Nebraska, USA

mymocha@...

My daughter's

pediatric

neurosurgeon said that her constant retethering would stop (she

retetheres due

to scar tissue) once she is fully grown. Clearly, there are all of

you

adults out here with tethering issues requiring surgeries etc. Do

you have any

idea why he would say such a thing? He said it is the stretching on

the cord

that creates the problem and once she is fully grown that should no

longer be

an issue.