Re: Detethering and growth

May 22, 2006

Thanks, Beth! That gives me something to hope for. An inch would be

an amazing thing!

Donna

>

> My son grew (or stretched) 1 " the first month after he was

de-tethered at age 4.

May 22, 2006

In a message dated 5/22/06 4:21:37 AM Eastern Daylight Time, lynnann@...

writes:

> is foot size difference related to tethered cord problems or split cord

> problems? Does anyone know how or why? I've seen a reference to foot size

> previously, but never any reasons.

>

Lynn,

My son was born with his cord tightly tethered from a fatty filum, and

also other neurological injuries to the nerves in his left leg and foot from

his caudal regression syndrome... He was detethered at four and a half months

of age.

If the nerve to the foot is damaged, it doesn't produce a normal signal and

this can affect growth of both bone and muscles.

For the muscles, this can either cause growth to fail from the very beginning

(example didn't develop any calf muscle on the affected leg and is

missing muscles in the foot and ankle - this is NO nerve signal to stimulate

muscle growth), or it can cause muscle to develop but not to it's normal size

('s thigh muscles on that leg are smaller than normal from some nerve

signal

stimulation but not the normal amount) or another scenario is that it is

working fine at birth and you get normal size of muscle that later

atrophies/shrinks

when nerve signal is disrupted. If the muscle is normal at birth, it is

sometimes possible to gain size and strenght back from nerve stimulation

therapy.

Many children/adults with a tether have the atrophied calf muscles that I've

seen, although none as badly as my son does, but he has the other issues

too...

For the bone, that also requires nerve impulses and if the nerves aren't

properly telling the foot to grow, it will stop for a while. With this

was

also from prior to birth, so he was born with a foot size discrepancy. In

that case, it is normal for the foot always to be smaller, usually the same

percentage of the normal foot that it was, barring further tethering

complications.

Some children develop the foot size later on, as a previously non

symptomatic tether starts causing problems. If it is noticed very early, it may

be

possible for the foot to catch up, but most people I've heard of with size

discrepancies usually keep them as they grow... Right now 's affected foot

is

about four sizes smaller than his other foot (you can see the difference in our

webpage, there's a link in my signature, on his foot page) and all the bones

in the foot and even the height of the foot are smaller, not just the length.

Since he wears an AFO to stabilize his ankle/foot, this takes up the extra

room in his shoe so he can wear two shoes the same size.

His is an extreme case though, and his foot was born clubbed also with his

big toe hammered (bends up at first joint, then down). Many children/adults

will have a normal looking foot, just smaller than the other...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 6

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and

4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile

ever)

conni60640@...

Our website: http://members.tripod.com/conni60640-ivil/

VACTERL/VATER support http://health.groups.yahoo.com/group/VACTERLNetwork/

TC support group http://health.groups.yahoo.com/group/LMC-TCS/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

S. Jersey

May 22, 2006

Hi Connie

I am always amazed what your has got. He stills looks really cute on

the photos!

My feet were " perfect " , according to my mum when I was born, but the left

foot started curling up and deforming at the age of 2. The shape of this

deformity has stayed with me, although after the detethering the tightness

of the 2 middle toes relaxed a bit and their flexibility improved. The

large toe has got worse and my footprint shows no toes touching the floor.

On the negative side, my right foot has always been the best one, and yet

began to develop a very high arch when I was about 18 - which, thinking

about it, was probably when the TC started to deteriorate really subtlely

and then badly when I was 32, leading to the surgery at age 35

Nina

Bristol, UK

--

> In a message dated 5/22/06 4:21:37 AM Eastern Daylight Time,

> lynnann@... writes:

>

>> is foot size difference related to tethered cord problems or split cord

>> problems? Does anyone know how or why? I've seen a reference to foot

>> size previously, but never any reasons.

>>

>

> Lynn,

>

> My son was born with his cord tightly tethered from a fatty filum,

> and also other neurological injuries to the nerves in his left leg and

> foot from his caudal regression syndrome... He was detethered at four

> and a half months of age.

>

> If the nerve to the foot is damaged, it doesn't produce a normal signal

> and this can affect growth of both bone and muscles.

>

> For the muscles, this can either cause growth to fail from the very

> beginning (example didn't develop any calf muscle on the affected

> leg and is missing muscles in the foot and ankle - this is NO nerve

> signal to stimulate muscle growth), or it can cause muscle to develop

> but not to it's normal size ('s thigh muscles on that leg are

> smaller than normal from some nerve signal stimulation but not the

> normal amount) or another scenario is that it is working fine at birth

> and you get normal size of muscle that later atrophies/shrinks when

> nerve signal is disrupted. If the muscle is normal at birth, it is

> sometimes possible to gain size and strenght back from nerve stimulation

> therapy.

>

> Many children/adults with a tether have the atrophied calf muscles that

> I've seen, although none as badly as my son does, but he has the other

> issues too...

>

> For the bone, that also requires nerve impulses and if the nerves aren't

> properly telling the foot to grow, it will stop for a while. With

> this was also from prior to birth, so he was born with a foot size

> discrepancy. In that case, it is normal for the foot always to be

> smaller, usually the same percentage of the normal foot that it was,

> barring further tethering complications. Some children develop the foot

> size later on, as a previously non symptomatic tether starts causing

> problems. If it is noticed very early, it may be possible for the foot

> to catch up, but most people I've heard of with size discrepancies

> usually keep them as they grow... Right now 's affected foot is

> about four sizes smaller than his other foot (you can see the difference

> in our webpage, there's a link in my signature, on his foot page) and

> all the bones in the foot and even the height of the foot are smaller,

> not just the length. Since he wears an AFO to stabilize his ankle/foot,

> this takes up the extra room in his shoe so he can wear two shoes the

> same size.

>

> His is an extreme case though, and his foot was born clubbed also with

> his big toe hammered (bends up at first joint, then down). Many

> children/adults will have a normal looking foot, just smaller than the

> other...

>

> Connie

> Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 6

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

> imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

> malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis

> with hemivertebrae, extra left rib, genital anomalies with hypospadius

> (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with

> clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and

> 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing

> dysphagia, eating issues and the most beautiful smile ever)

> conni60640@...

>

> Our website: http://members.tripod.com/conni60640-ivil/

>

> VACTERL/VATER support http://health.groups.yahoo.com/group/VACTERLNetwork/

>

> TC support group http://health.groups.yahoo.com/group/LMC-TCS/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

> S. Jersey

>

May 27, 2006

The only thing that I can think of is that this could be

the case if Tethered Cord was the cause of your Scoliosis.

Which isn't the case for everybody, even those with both

Conditions.

But even in that case, if you have Scoliosis, things still

grow, but just the wrong way.

That's the only reasoning I can come up with. Others

may be aware of other information.

Me

Nebraska, USA

mymocha@...

But

since a tethered cord can cause/aggravate scoliosis, is it possible to

also restrict spinal cord growth?

May 29, 2006

In a message dated 5/22/2006 8:33:01 AM Eastern Standard Time,

Nina.Bunton@... writes:

Hi Connie

I am always amazed what your has got. He stills looks really cute on

the photos!

Yeah, he looks much different " in person " than he does on paper It's

hard to tell looking at him that he's been through so much and has all these

issues...