Re: tethered cord help needed.

[Guest guest]

sorry, I have no advice, but will keep you in our thoughts and prayers.

tethered cord help needed.

> Hi I have not posted in a good while but was hoping some of you might be

> able to help. had a MRI done just recently and it was discovered

> that he has a tethered cord at L/3 L/4 he also has some issues with C1, C3

> and C4

> They said the tethered cord has a fatty mass and is pushed pretty far

> back and he has narrowing in C3 and C4 and they are also small, also his

> C1 is not put together right and is not in one solid piece. We have to

> see a Nero surgeon in May to discuss surgery and see what all of this

> means and what to do about all of it. Does anyone out here have any

> experience with any of this?? Any advise would be very appreciated. We

> are truly worried that he is going to need major spine surgery and would

> like to know as much about any of this before we see the surgeon. I am

> making a list of question to ask the surgeon but thought someone out here

> might has some in-site on this issues. I may not post to often but do

> keep all of you in my thoughts and prayer.

>

> mom to 12yrs April 29th.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

sorry, I have no advice, but will keep you in our thoughts and prayers.

tethered cord help needed.

> Hi I have not posted in a good while but was hoping some of you might be

> able to help. had a MRI done just recently and it was discovered

> that he has a tethered cord at L/3 L/4 he also has some issues with C1, C3

> and C4

> They said the tethered cord has a fatty mass and is pushed pretty far

> back and he has narrowing in C3 and C4 and they are also small, also his

> C1 is not put together right and is not in one solid piece. We have to

> see a Nero surgeon in May to discuss surgery and see what all of this

> means and what to do about all of it. Does anyone out here have any

> experience with any of this?? Any advise would be very appreciated. We

> are truly worried that he is going to need major spine surgery and would

> like to know as much about any of this before we see the surgeon. I am

> making a list of question to ask the surgeon but thought someone out here

> might has some in-site on this issues. I may not post to often but do

> keep all of you in my thoughts and prayer.

>

> mom to 12yrs April 29th.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

sorry, I have no advice, but will keep you in our thoughts and prayers.

tethered cord help needed.

> Hi I have not posted in a good while but was hoping some of you might be

> able to help. had a MRI done just recently and it was discovered

> that he has a tethered cord at L/3 L/4 he also has some issues with C1, C3

> and C4

> They said the tethered cord has a fatty mass and is pushed pretty far

> back and he has narrowing in C3 and C4 and they are also small, also his

> C1 is not put together right and is not in one solid piece. We have to

> see a Nero surgeon in May to discuss surgery and see what all of this

> means and what to do about all of it. Does anyone out here have any

> experience with any of this?? Any advise would be very appreciated. We

> are truly worried that he is going to need major spine surgery and would

> like to know as much about any of this before we see the surgeon. I am

> making a list of question to ask the surgeon but thought someone out here

> might has some in-site on this issues. I may not post to often but do

> keep all of you in my thoughts and prayer.

>

> mom to 12yrs April 29th.

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

> low rates.

>

>

[Guest guest]

I'm not sure if this helps or not...my daughter had/has a Chiari

Malformation (the cerebellum is being pulled down into the spinal column).

My neurosurgeon used the phrase tethered chord with us. He says that when a

baby is developing that the cord is tethered, but at so many weeks gestation

the chord relaxes, and the brain moves upward. In Meagan's case, the chord

stayed tethered, pulling down on her cerebellum. We had to do a

decompression surgery. They were going to cut from the base of her neck,

down to her second vertebrae. They then enlarge the foramen magnum (the hole

the spine goes into in the skull). Then, they remove half of first, and

sometimes second vertebral rings. This allows space for the cerebellum to

pulsate...the happy dance. If the cerebellum pulsates, it is working to

normal function. If it doesn't pulsate, then there are areas in the

cerebellum that are being compromised. In Meagan's case, she had numbness in

her hands, headaches, and stiff extremities. We fortunately/unfortunately

found out that on top of her Chiari, she had a skull deformation near the

foramen magnum (not related to a tethered cord). So once the skull was

corrected, we didn't proceed forward with the rest of the surgery...her

cerebellum was doing the happy dance! But, I know those were the next steps

he was going to take. If you think that this might be anything related to

your story, let me know. I can give more info about the surgery, and

recovery.

What symptoms were showing that this tethered cord was discovered?

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- tethered cord help needed.

Hi I have not posted in a good while but was hoping some of you might be

able to help. had a MRI done just recently and it was discovered that

he has a tethered cord at L/3 L/4 he also has some issues with C1, C3 and C4

They said the tethered cord has a fatty mass and is pushed pretty far back

and he has narrowing in C3 and C4 and they are also small, also his C1 is

not put together right and is not in one solid piece. We have to see a Nero

surgeon in May to discuss surgery and see what all of this means and what to

do about all of it. Does anyone out here have any experience with any of

this?? Any advise would be very appreciated. We are truly worried that he

is going to need major spine surgery and would like to know as much about

any of this before we see the surgeon. I am making a list of question to

ask the surgeon but thought someone out here might has some in-site on this

issues. I may not post to often but do keep all of you in my thoughts and

prayer.

mom to 12yrs April 29th.

---------------------------------

New Yahoo! Messenger with Voice. Call regular phones from your PC for low,

low rates.

[Guest guest]

Hi ,

We've learned just a little about tethered cord when my son first

started to master walking. He also has cerebral palsy so we weren't

sure if his unusual gait and low tone in his legs was due to the CP or

tied to the sacral dimple he has which has a tuft of hair growing from

it (the tuft of hair can be a sign of spinal involvement). He also has

kidney defects (right duplex ureter) which are also correlated with the

sacral dimple. They did use the term tethered cord, but did an

ultrasound to see how deep the dimple was. Fortunately there was no

spinal involvement. All I remember was that they did say that kidney

problems and leg weakness as well as walking with the feet turned

outwards were some signs of tethered cord.

Our prayers are with you and your family! Keep us posted!

Take care,

[Guest guest]

xxxxxx

>

> Hi ,

> We've learned just a little about tethered cord when my son first

> started to master walking. He also has cerebral palsy so we weren't

> sure if his unusual gait and low tone in his legs was due to the CP or

> tied to the sacral dimple he has which has a tuft of hair growing from

> it (the tuft of hair can be a sign of spinal involvement). He also has

> kidney defects (right duplex ureter) which are also correlated with the

> sacral dimple. They did use the term tethered cord, but did an

> ultrasound to see how deep the dimple was. Fortunately there was no

> spinal involvement. All I remember was that they did say that kidney

> problems and leg weakness as well as walking with the feet turned

> outwards were some signs of tethered cord.

> Our prayers are with you and your family! Keep us posted!

>

> Take care,

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

-

" All I remember was that they did say that kidney

problems and leg weakness as well as walking with the feet turned

outwards were some signs of tethered cord. " My daughter has a left pelvic

kidney (just didn't migrate all the way), low muscle tone all around, and

walks with her feet turned out and has a sacral dimple. But she does not

have tethered cord. Hmmmm...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

That's the thing...at least in my son's case, he has a lot of

these " quirks " that overlap so many conditions that I have heard these

terms come up, freak me out, then turn out to be nothing...the dimple,

the two vessel cord, the giant magna cisterna, etc. It's like every

time we go to the doctor, it's like, what now? You know? But for me,

with him being incontinent only sometimes at age 8, it was worth it to

be certain the dimple meant nothing so I can say, okay, the loss of

bladder function and funny gait are probably due to the cerebral palsy

and nothing can be done about it.

It kind of makes me wonder, though, for him...how can one child have so

many anomalies all at once? He has CHARGE features, but there are other

things that aren't common in CHARGE but are common in other syndromes,

but none of them are in conjunction with each other. Does that make

sense? Sometimes we feel like " nomads " ...we don't really fit in

anywhere! I'm sure there are others out there like that, too. It

sometimes just feels really lonely!! Anyway, you are right that the

dimples are common and most likely meaningless.

[Guest guest]

That's the thing...at least in my son's case, he has a lot of

these " quirks " that overlap so many conditions that I have heard these

terms come up, freak me out, then turn out to be nothing...the dimple,

the two vessel cord, the giant magna cisterna, etc. It's like every

time we go to the doctor, it's like, what now? You know? But for me,

with him being incontinent only sometimes at age 8, it was worth it to

be certain the dimple meant nothing so I can say, okay, the loss of

bladder function and funny gait are probably due to the cerebral palsy

and nothing can be done about it.

It kind of makes me wonder, though, for him...how can one child have so

many anomalies all at once? He has CHARGE features, but there are other

things that aren't common in CHARGE but are common in other syndromes,

but none of them are in conjunction with each other. Does that make

sense? Sometimes we feel like " nomads " ...we don't really fit in

anywhere! I'm sure there are others out there like that, too. It

sometimes just feels really lonely!! Anyway, you are right that the

dimples are common and most likely meaningless.

[Guest guest]

That feeling of not fitting in anywhere -- having things that seem outside

of CHARGE -- sometimes I wonder if we don't all feel that sometimes. CHARGE

is so complex. Aubrie's had hip surgery and is having significant issues

with possible submucous palate repair that are not typical with CHARGE. Of

course, adding CP and stuff on top of it makes that even more complicated.

Anyway -- just saying I know a glimpse of how you feel. It's fairly often

that someone posts a question or situation that no one shares. The

complexity of CHARGE is my newest awareness -- my take-home message from

this conference -- so you struck a nerve with me and got me thinking.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: tethered cord help needed.

That's the thing...at least in my son's case, he has a lot of

these " quirks " that overlap so many conditions that I have heard these

terms come up, freak me out, then turn out to be nothing...the dimple,

the two vessel cord, the giant magna cisterna, etc. It's like every

time we go to the doctor, it's like, what now? You know? But for me,

with him being incontinent only sometimes at age 8, it was worth it to

be certain the dimple meant nothing so I can say, okay, the loss of

bladder function and funny gait are probably due to the cerebral palsy

and nothing can be done about it.

It kind of makes me wonder, though, for him...how can one child have so

many anomalies all at once? He has CHARGE features, but there are other

things that aren't common in CHARGE but are common in other syndromes,

but none of them are in conjunction with each other. Does that make

sense? Sometimes we feel like " nomads " ...we don't really fit in

anywhere! I'm sure there are others out there like that, too. It

sometimes just feels really lonely!! Anyway, you are right that the

dimples are common and most likely meaningless.

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

That feeling of not fitting in anywhere -- having things that seem outside

of CHARGE -- sometimes I wonder if we don't all feel that sometimes. CHARGE

is so complex. Aubrie's had hip surgery and is having significant issues

with possible submucous palate repair that are not typical with CHARGE. Of

course, adding CP and stuff on top of it makes that even more complicated.

Anyway -- just saying I know a glimpse of how you feel. It's fairly often

that someone posts a question or situation that no one shares. The

complexity of CHARGE is my newest awareness -- my take-home message from

this conference -- so you struck a nerve with me and got me thinking.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: tethered cord help needed.

That's the thing...at least in my son's case, he has a lot of

these " quirks " that overlap so many conditions that I have heard these

terms come up, freak me out, then turn out to be nothing...the dimple,

the two vessel cord, the giant magna cisterna, etc. It's like every

time we go to the doctor, it's like, what now? You know? But for me,

with him being incontinent only sometimes at age 8, it was worth it to

be certain the dimple meant nothing so I can say, okay, the loss of

bladder function and funny gait are probably due to the cerebral palsy

and nothing can be done about it.

It kind of makes me wonder, though, for him...how can one child have so

many anomalies all at once? He has CHARGE features, but there are other

things that aren't common in CHARGE but are common in other syndromes,

but none of them are in conjunction with each other. Does that make

sense? Sometimes we feel like " nomads " ...we don't really fit in

anywhere! I'm sure there are others out there like that, too. It

sometimes just feels really lonely!! Anyway, you are right that the

dimples are common and most likely meaningless.

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

:

, too, had what her doctor at Boston Childrens called a sacral

dimple along with some other issues (mainly wetting in her early teens

even though she'd been toilet trained since very early). Tethered cord was

eventually ruled out. From what I've seen, I, along with others I know,

have a dimple, too. Martha

[Guest guest]

:

, too, had what her doctor at Boston Childrens called a sacral

dimple along with some other issues (mainly wetting in her early teens

even though she'd been toilet trained since very early). Tethered cord was

eventually ruled out. From what I've seen, I, along with others I know,

have a dimple, too. Martha

[Guest guest]

:

, too, had what her doctor at Boston Childrens called a sacral

dimple along with some other issues (mainly wetting in her early teens

even though she'd been toilet trained since very early). Tethered cord was

eventually ruled out. From what I've seen, I, along with others I know,

have a dimple, too. Martha

[Guest guest]

christine the feleling of being the nomad is not alone i ahve it to

sometimes ive got many frend sbut soemtimes like if we go out im the only

one who cant eat and stuff u know wat i mean but i dont mind ust sometimes

ellen

>

> :

> , too, had what her doctor at Boston Childrens called a sacral

> dimple along with some other issues (mainly wetting in her early teens

> even though she'd been toilet trained since very early). Tethered cord

> was

> eventually ruled out. From what I've seen, I, along with others I know,

> have a dimple, too. Martha

>

>

>

>

[Guest guest]

christine the feleling of being the nomad is not alone i ahve it to

sometimes ive got many frend sbut soemtimes like if we go out im the only

one who cant eat and stuff u know wat i mean but i dont mind ust sometimes

ellen

>

> :

> , too, had what her doctor at Boston Childrens called a sacral

> dimple along with some other issues (mainly wetting in her early teens

> even though she'd been toilet trained since very early). Tethered cord

> was

> eventually ruled out. From what I've seen, I, along with others I know,

> have a dimple, too. Martha

>

>

>

>

[Guest guest]

christine the feleling of being the nomad is not alone i ahve it to

sometimes ive got many frend sbut soemtimes like if we go out im the only

one who cant eat and stuff u know wat i mean but i dont mind ust sometimes

ellen

>

> :

> , too, had what her doctor at Boston Childrens called a sacral

> dimple along with some other issues (mainly wetting in her early teens

> even though she'd been toilet trained since very early). Tethered cord

> was

> eventually ruled out. From what I've seen, I, along with others I know,

> have a dimple, too. Martha

>

>

>

>

[Guest guest]

Thanks, Ellen! I am glad I am not the only one who feels this way!!

[Guest guest]

Thanks, Michele! I think that is what I need....I haven't yet been to a

conference and I haven't yet met another family with a CHARGEr! I am

definitely planning on the next one...especially because it is near

Disneyland!!

[Guest guest]

Thanks, Michele! I think that is what I need....I haven't yet been to a

conference and I haven't yet met another family with a CHARGEr! I am

definitely planning on the next one...especially because it is near

Disneyland!!

[Guest guest]

Thanks, Michele! I think that is what I need....I haven't yet been to a

conference and I haven't yet met another family with a CHARGEr! I am

definitely planning on the next one...especially because it is near

Disneyland!!

[Guest guest]

,

I'm afraid I don't have any answers, but a couple of questions. Why did

have the MRI , were there symptoms or issues with his spine? If so,

did this just develop? My 8 year old daughter will soon need scoliosis

surgery and there has been talk of a tethered cord, which may be

contributing to urinary incontinance. Hope you get answers and best of luck.

Jeanie Colp

mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

[Guest guest]

,

I'm afraid I don't have any answers, but a couple of questions. Why did

have the MRI , were there symptoms or issues with his spine? If so,

did this just develop? My 8 year old daughter will soon need scoliosis

surgery and there has been talk of a tethered cord, which may be

contributing to urinary incontinance. Hope you get answers and best of luck.

Jeanie Colp

mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

[Guest guest]

,

I'm afraid I don't have any answers, but a couple of questions. Why did

have the MRI , were there symptoms or issues with his spine? If so,

did this just develop? My 8 year old daughter will soon need scoliosis

surgery and there has been talk of a tethered cord, which may be

contributing to urinary incontinance. Hope you get answers and best of luck.

Jeanie Colp

mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

[Guest guest]

sigh, i really wish i could go to the next one. I want to go to disney land

too. Well... maby i could try saving. lol in my dreams. i only have 20

dollars left from this month. It aint gonna happen.

Chantelle