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Dear

Please see my website for an explanation of this. It is at

<http://www.btinternet.com/~tetheredcordresources/>

and go to the Tethered cord Syndrome page

If you need more explanation, please email me privately

Regards

Nina

Bristol, UK

--On 21 February 2006 15:54 +0000 amandamariebaker

wrote:

> Hello everyone,

>

> In reading some of your posts, I gather that TCS usually worsens as a

> child grows...the spine lengthens and creates more tension.

> Well, here is what I just don't get: I am 35 years old. My symptoms

> didn't really become bothersome until my mid-20's. My headache became

> constant at age 28. It's been in the last 3 months that I've started

> to notice lower back pain...and worse headaches. I know my bone

> structure hasn't changed. I'm still 5'3 " . So, what's the reason that

> someone in their 30's starts to worsen? I admit, I am diagnosed with

> chiari (I) and perhaps that is a contributing factor. But, also,

> chiari I is an issue with BONE structure. HOW can this progressively

> get worse if your bones have reached a " stop " in development?

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

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was found muttering these words:

I'm not really sure, but it certainly was the case for me in my 40's. I

had problems in my childhood and teens, then things were very quiet until

my 40's -- when there were some arthritic changes. I'm sure that started

things rolling.

>>Hello everyone,

>>

>>In reading some of your posts, I gather that TCS usually worsens as a

>>child grows...the spine lengthens and creates more tension.

>>Well, here is what I just don't get: I am 35 years old. My symptoms

>>didn't really become bothersome until my mid-20's. My headache became

>>constant at age 28. It's been in the last 3 months that I've started

>>to notice lower back pain...and worse headaches. I know my bone

>>structure hasn't changed. I'm still 5'3 " . So, what's the reason that

>>someone in their 30's starts to worsen? I admit, I am diagnosed with

>>chiari (I) and perhaps that is a contributing factor. But, also,

>>chiari I is an issue with BONE structure. HOW can this progressively

>>get worse if your bones have reached a " stop " in development?

>>

>>

>>

>>

>>

>>

>>

>>

>>Not Medical Advice. We Are Not Doctors.

>>Need help with the list? Email

kathy@...,michelle@..., rick@...

>>

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I don't usually answer these, but I could not pass this one up. I am 49

and things are getting worse as I get older, but I do believe that it is

because my body is starting to feel the stress and strain that all of

this has caused for so many years and reacting and/or wearing out.

Getting older is not fun...

Carol Barber

another curious question...

Hello everyone,

In reading some of your posts, I gather that TCS usually worsens as a

child grows...the spine lengthens and creates more tension. Well, here

is what I just don't get: I am 35 years old. My symptoms

didn't really become bothersome until my mid-20's. My headache became

constant at age 28. It's been in the last 3 months that I've started

to notice lower back pain...and worse headaches. I know my bone

structure hasn't changed. I'm still 5'3 " . So, what's the reason that

someone in their 30's starts to worsen? I admit, I am diagnosed with

chiari (I) and perhaps that is a contributing factor. But, also,

chiari I is an issue with BONE structure. HOW can this progressively

get worse if your bones have reached a " stop " in development?

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

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Share on other sites

This is from my website (and the information is from medical journals!),

Nina

Normal spinal cord

The normal spinal cord begins at the junction of the skull with the

cervical (neck) spine, and the cord continues down the spinal column until

the mid-back region, the lumbar area. Beyond this point nerves continue

down the spinal canal (as the cauda equina) and the spinal cord ends with

the non-functioning tissue known as the filum terminale, which usually has

the elasticity similar to a rubber band. The cord and the spinal bones

(vertebrae) initially start out the same length but as the foetus and child

grows, the vertebrae grow faster than the cord and therefore the cord

effectively " ascends " within the spinal column. In people with no tethered

cord the spinal cord ends up hanging freely within the vertebrae, protected

by cerebrospinal fluid and, as there is no obstruction to its movement, it

is able to flex and move freely with everyday activities.

Pathology

Any event which interferes with the development of the spinal cord and

cauda equinae can lead to the ingrowth of other tissues like fat and skin,

which creates an abnormal attachment, or tethering of the spinal cord

Tethering of the spinal cord interferes with the normal regression process

causing damage to the spinal cord as it is stretched and placed under

abnormal tension

The tension injures the spinal cord and may cause symptoms

Tethered spinal cord

The embryonic spinal bones fuse together at different rates in a zip-like

fashion proceeding in both directions. However, the bones at the caudal

(tail) end form by coalescing in a disorganised way, and if the spinal cord

becomes trapped in this area of rapidly amassing material, it becomes

" tethered " . Due to tethering, as the child grows there is no free movement

of the cord and it is not able to ascend the spinal column. The lower part

of the cord is therefore stretched and progressive neurological damage

occurs as more tension is placed on the nerves emanating from the end of

the cord. Blood circulation to the cord and the lower extremities may be

reduced and in most cases the nerve impulses may be weak, distorted or

absent.

Neuronal (nerve) dysfunction due to tethering is subsequent to, firstly,

metabolic derangement or hypoxia (the reduction of oxygen supply to tissues

below physiological levels, despite adequate passage of blood through the

tissue), and, secondly, the electrophysiology of the cord is impaired due

to the distortion of neuronal membranes. Effectively, hypoxia means that

the cord is deprived of oxygen and therefore electrical impulses are

depressed. Physically this causes the nerves to reduce or stop sending

impulses, both for sensory and motor functions, thereby creating and

exacerbating progressive neurological deterioration.

At birth, there may be few external signs that the cord is tethered and as

the spinal cord and its tissues are generally not fully exposed, there is

rarely cause to operate immediately, except perhaps in the case of

connecting dermal sinus tracts (skin-to-cord). A lipomyelomeningocele is

most obviously visible as a skin-covered fatty mass in the lumbosacral

region.

It used to be thought that most of the nerve stretching occurs at a time of

rapid growth at puberty, but foot deformities and scoliosis can be apparent

by the age of two as the cord stretching has effectively been going on

since ~ 6 weeks post-conception. Once damaged, neurological function may

not necessarily be recovered or improved. As indicated in the sections on

spinal dysraphism, both children and adults can experience worsening

symptoms of tethered spinal cords. In children the deterioration is caused

by stretching of the cord with natural childhood growth. However in adults

" without appropriate intervention most deteriorations in tethered cords are

gradual, insidious over years. Rarely it can be very sudden, as can occur

if one is put in the lithotomy position. Irreversability also occurs slowly

and insidiously " . [ian Pople, 2002]. Also see this article by Shokei

Yamada, which is very informative: " Pathophysiology of Tethered Cord

Syndrome: Correlation with Symptomatology " , Neurosurgical Focus, 16(2),

2004, Article 6

Adults with prior stable symptoms of a tethered cord can experience

worsening of their symptoms due to general physical wear and tear on the

cord and spinal nerves, and subsequent hypoxia and ischaemia of the spinal

cord. These symptoms may be increased pain, decreased function, mobility

and sensation, and further deformation of already poor feet. They may be

fully accustomed to their condition, but any new symptoms that are out of

the ordinary should be investigated by neurosurgical consultants who have a

special interest in the area of spina bifida and spinal cord tethering.

Surgery may be recommended in order to arrest further neurological damage

and the deterioration of the function and sensation of the limbs, bladder

and bowel.

--On 21 February 2006 11:11 -0500 Carol Barber

wrote:

> I don't usually answer these, but I could not pass this one up. I am 49

> and things are getting worse as I get older, but I do believe that it is

> because my body is starting to feel the stress and strain that all of

> this has caused for so many years and reacting and/or wearing out.

>

> Getting older is not fun...

>

> Carol Barber

>

>

>

> another curious question...

>

>

> Hello everyone,

>

> In reading some of your posts, I gather that TCS usually worsens as a

> child grows...the spine lengthens and creates more tension. Well, here

> is what I just don't get: I am 35 years old. My symptoms

> didn't really become bothersome until my mid-20's. My headache became

> constant at age 28. It's been in the last 3 months that I've started

> to notice lower back pain...and worse headaches. I know my bone

> structure hasn't changed. I'm still 5'3 " . So, what's the reason that

> someone in their 30's starts to worsen? I admit, I am diagnosed with

> chiari (I) and perhaps that is a contributing factor. But, also,

> chiari I is an issue with BONE structure. HOW can this progressively

> get worse if your bones have reached a " stop " in development?

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

>

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Share on other sites

  • 3 weeks later...
Guest guest

Mine did not. I had non symptomatic Tethered Cord,

found at age 11, and had Surgery for it at that

time, because that's just what they did back then.

There really is no Time Table with Tethered Cord.

They used to think there was, more so........but

have since realized otherwise.

I don't know the actual answer to your Question,

just that it happens. I wouldn't be suprised if there

wasn't a concrete answer to your Question. I

know that doesn't help, but I think this

Condition is unpredictable, and there is soo

much unknown or overlooked.

But I do know this, Tethered Cord has nothing to

do with your Bones. It's the tension on your

Spinal Cord from moving, bending.......etc that

causes problems.

Me :)

Nebraska, USA

mymocha@...

> In reading some of your posts, I gather that TCS usually worsens as a

> child grows...the spine lengthens and creates more tension.

>

So, what's the reason that

> someone in their 30's starts to worsen? I admit, I am diagnosed with

> chiari (I) and perhaps that is a contributing factor. But, also,

> chiari I is an issue with BONE structure. HOW can this progressively

> get worse if your bones have reached a " stop " in development?

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Share on other sites

Guest guest

In a message dated 3/8/2006 11:08:15 PM Eastern Standard Time,

mymocha@... writes:

But I do know this, Tethered Cord has nothing to

do with your Bones. It's the tension on your

Spinal Cord from moving, bending.......etc that

causes problems.

> In reading some of your posts, I gather that TCS usually worsens as a

> child grows...the spine lengthens and creates more tension.

From all I've read and seen this is a yes and no question... the bones

themselves don't cause the TC, but as the spine lengthens and the spinal cord

cannot raise up with it because it is tethered down at the bottom, this WILL

worsen a TC that has not been released. It creates that extra tension on the

cord.

For some kids who weren't TIGHTLY tethered at first, they may have enough

time to not have symptoms through the first growth spurts, but if your tether

is low and tight, you won't have that grace time. My son was tightly tethered

(L4/L5) and symptomatic at 3 months of age, and there is no way he could

have made it through the growth spurts without some serious damage...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(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@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

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

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

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

S. Jersey

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Guest guest

Hi Connie I agree

I was tethered at L5-S2 (very low) and my feet were affected by the time I

was 2. Of course in the 60s not many people knew about TC and so nothing

was ever done until I deteriorated very quickly aged 33

Nina

--

>

> In a message dated 3/8/2006 11:08:15 PM Eastern Standard Time,

> mymocha@... writes:

>

> But I do know this, Tethered Cord has nothing to

> do with your Bones. It's the tension on your

> Spinal Cord from moving, bending.......etc that

> causes problems.

>

>> In reading some of your posts, I gather that TCS usually worsens as a

>> child grows...the spine lengthens and creates more tension.

>

>

>

> From all I've read and seen this is a yes and no question... the bones

> themselves don't cause the TC, but as the spine lengthens and the spinal

> cord cannot raise up with it because it is tethered down at the bottom,

> this WILL worsen a TC that has not been released. It creates that

> extra tension on the cord.

>

> For some kids who weren't TIGHTLY tethered at first, they may have

> enough time to not have symptoms through the first growth spurts, but if

> your tether is low and tight, you won't have that grace time. My son

> was tightly tethered (L4/L5) and symptomatic at 3 months of age, and

> there is no way he could have made it through the growth spurts without

> some serious damage...

>

> Connie

> Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

> (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@..._ (mailto:conni60640@...)

>

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

> (http://members.tripod.com/conni60640-ivil/)

>

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

> (http://health.groups.yahoo.com/group/LMC-TCS/)

>

> Congenital scoliosis support group

> _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

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

>

> S. Jersey

>

>

>

>

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Guest guest

Me too, tethered at L1, probably all my life, deteriorated very quickly

at age 42.

Only symptoms for first 42 years were unusually clumsy, very minor bowel

and bladder problems, restless leg syndrome,

nothing any doctors were concerned about...

I do not know why the deterioration really started accelerating, no

accidents or anything.

Rick

AB Bunton, Electrical & Electronic Engineering said the following on

3/9/2006 2:02 PM:

> Hi Connie I agree

>

> I was tethered at L5-S2 (very low) and my feet were affected by the time I

> was 2. Of course in the 60s not many people knew about TC and so nothing

> was ever done until I deteriorated very quickly aged 33

>

> Nina

>

> --

>

>

>> In a message dated 3/8/2006 11:08:15 PM Eastern Standard Time,

>> mymocha@... writes:

>>

>> But I do know this, Tethered Cord has nothing to

>> do with your Bones. It's the tension on your

>> Spinal Cord from moving, bending.......etc that

>> causes problems.

>>

>>

>>> In reading some of your posts, I gather that TCS usually worsens as a

>>> child grows...the spine lengthens and creates more tension.

>>>

>>

>> From all I've read and seen this is a yes and no question... the bones

>> themselves don't cause the TC, but as the spine lengthens and the spinal

>> cord cannot raise up with it because it is tethered down at the bottom,

>> this WILL worsen a TC that has not been released. It creates that

>> extra tension on the cord.

>>

>> For some kids who weren't TIGHTLY tethered at first, they may have

>> enough time to not have symptoms through the first growth spurts, but if

>> your tether is low and tight, you won't have that grace time. My son

>> was tightly tethered (L4/L5) and symptomatic at 3 months of age, and

>> there is no way he could have made it through the growth spurts without

>> some serious damage...

>>

>> Connie

>> Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

>> (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@..._ (mailto:conni60640@...)

>>

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

>> (http://members.tripod.com/conni60640-ivil/)

>>

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

>> (http://health.groups.yahoo.com/group/LMC-TCS/)

>>

>> Congenital scoliosis support group

>> _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

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

>>

>> S. Jersey

>>

>>

>>

>>

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Guest guest

From looking at my baby/toddle pictures from the 1940s, I appear to

have been born with some underdeveloped calf muscles and was very

pidgeon toed. I also had a huge, very noticable lipoma across my

entire butt. I developed hammer toes and pes cavus in those first two

years, and always have bowel and bladder problems.

My parents were told to leave me alone as far as spine surgery because

my sb was a strange kind, covered with skin, and they did.

Symptomatically I was stable all the way to my mid-forties. I had no

accident or big fall or anything you could point a finger at, either.

I've always like the theory that deterioration like mine and Rick's is

due to cumulative damage. That all our life long bending, twisting and

turning that stretched our cord causes microscopic damage to the nerve

tissue and to the blood vessels that supply oxygen to the tissues.

Eventually the damage passes a threshold and we have new or increased

symptoms.

V

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