Re: A form of Spina Bifida/Question

[Guest guest]

Di,

In one of our appointments with Marlee, i remember her nrsgn telling us one

theory on her type of TSC (lipomyelomeningocele.. closed spine)....he said

that there is some sort of disruption in the closure of the neural tube...in

some cases...the spine would remain open....and another would result in her

type of TSC....he went on to theorize that her spine must have " close late "

which might explain the elevated AFP screens in the pregnancy. he also told

us... " if you were going to stick your hand in the SB grab bag...this is the

one to grab as we have a great success rate of correcting the problem with

surgery and preventing further nerve damage " so...you see it depends on who

you talk to.......some Dr.s will tell you TSC alone is a type of SB......but

when i think of SB...i think of the open spine form......so, in " theory "

Marlee came " this close " to having SB as well.

Make sense??? or am i babbling?

Re: A form of Spina Bifida/Question

> now i got a question. A neurosurg Dr. looking at my MRI scans the first

time

> when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when

I

> was born. What did he mean???? Then I told another Dr. about this and he

said

> that there was no such thing as ALMOST having it. Who is right??

> Both good Dr.s.

>

> thanks'

> di

>

>

>

[Guest guest]

exactly brande...so you see how easy it can be for a patient or parent of a

patient to be mislead? i guess the best we can do is research on our

own....and take it from that point. yes....this was His theory......and up

to a few months ago...the only one i had.

when i referred to the open spine form of SB...i wasn't referring to any

Degree of deformity at all...but rather offering " one " opinion to

understanding the diagnosis that has just been given.

so...in your " opinion " which is it..........TSC or SB.....let's say in

Marlee's case. and let me throw this in....her insurance refused to pay for

her PT with TSC listed as the diagnosis....so her PT changed it to SB saying

the SB caused the TSC.....and the developmental delay......not that it

really matters at all....but, in her case the SB caused the

tether....correct.

and keep in mind....i am.....new to all this!

cindy

Re: A form of Spina Bifida/Question

> From what I know, Lipomyelomeningocele is a form of Spina

> Bifida...........so, from my view, I would have to say she has Spina

Bifida,

> and is just not close to it. But I think when people hear about Spina

> Bifida, especially those who don't know much about it, they think of the

> Open form and severe Deformity. I only say this because you did say she,

> well in your words..... " her type of TSC (lipomyelomeningocele.. closed

> spine) " .

>

> I have never heard of a Dr., one of mine, in person, ever referring to

> Tethered Cord as Spina Bifida..........but seperate problems, which they

> are. However, I have heard some reference to it on the Internet. Not alot,

I

> think just enough for some people to get the wrong idea.

>

> I understand you were pretty much talking in theory, though...........so

my

> thoughts are just showing why that might not be the case.

>

> Me

> Nebraska, USA

> mymocha@...

>

> , i remember her nrsgn telling us one

> > theory on her type of TSC (lipomyelomeningocele.. closed

spine)....some

> Dr.s will tell you TSC alone is a type of SB......but

> > when i think of SB...i think of the open spine form......so, in " theory "

> > Marlee came " this close " to having SB as well.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

Good question.........it would make me a bit suspicious, too.

Hopefully somebody else will be able to give you more insight into this.

Me

Nebraska, USA

mymocha@...

A neurosurg Dr. looking at my MRI scans the first time

> when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when

I

> was born. What did he mean???? Then I told another Dr. about this and he

said

> that there was no such thing as ALMOST having it. Who is right??

[Guest guest]

Hello Di,

I think the ALMOST Dr. would have to clarify exactly what he meant.

(This all reminds me of a saying of my grandparents, " No such thing as a little

bit pregnant " .)

's mom

Re: A form of Spina Bifida/Question

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he

said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

Hello Di,

I think the ALMOST Dr. would have to clarify exactly what he meant.

(This all reminds me of a saying of my grandparents, " No such thing as a little

bit pregnant " .)

's mom

Re: A form of Spina Bifida/Question

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he

said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

Hello Di,

I think the ALMOST Dr. would have to clarify exactly what he meant.

(This all reminds me of a saying of my grandparents, " No such thing as a little

bit pregnant " .)

's mom

Re: A form of Spina Bifida/Question

now i got a question. A neurosurg Dr. looking at my MRI scans the first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida when I

was born. What did he mean???? Then I told another Dr. about this and he

said

that there was no such thing as ALMOST having it. Who is right??

Both good Dr.s.

thanks'

di

[Guest guest]

now i got a question.  A neurosurg Dr. looking at my MRI scans the

first time

when i was 33 told me that I was 'THIS CLOSE " to having Spina Bifida

when I

was born.  What did he mean????  Then I told another Dr. about this

and he said

that there was no such thing as ALMOST having it.  Who is right??

Both good Dr.s.

thanks'

di

I don't know about that Di

If a doctor told me that I'd think I had Spinal Bifida.

-Marie

[Guest guest]

Di,

Did you ask that doctor how can you be that close to having Spinal

Bifida?

-Marie

[Guest guest]

But you can have a close back and still have spinal bifida

but before this group I thought only spinal bifida people can have a

tethered cord

to people that don't know anything about spinal bifida would be very

confused with that though

but of course when i told this one lady my son had spinal bifida she

thought i was talking about a drug so she already confused just by

saying my son has spinal bifida

who knows

-Marie

[Guest guest]

But you can have a close back and still have spinal bifida

but before this group I thought only spinal bifida people can have a

tethered cord

to people that don't know anything about spinal bifida would be very

confused with that though

but of course when i told this one lady my son had spinal bifida she

thought i was talking about a drug so she already confused just by

saying my son has spinal bifida

who knows

-Marie

[Guest guest]

But you can have a close back and still have spinal bifida

but before this group I thought only spinal bifida people can have a

tethered cord

to people that don't know anything about spinal bifida would be very

confused with that though

but of course when i told this one lady my son had spinal bifida she

thought i was talking about a drug so she already confused just by

saying my son has spinal bifida

who knows

-Marie

[Guest guest]

From what I know, Lipomyelomeningocele is a form of Spina

Bifida...........so, from my view, I would have to say she has Spina Bifida,

and is just not close to it. But I think when people hear about Spina

Bifida, especially those who don't know much about it, they think of the

Open form and severe Deformity. I only say this because you did say she,

well in your words..... " her type of TSC (lipomyelomeningocele.. closed

spine) " .

I have never heard of a Dr., one of mine, in person, ever referring to

Tethered Cord as Spina Bifida..........but seperate problems, which they

are. However, I have heard some reference to it on the Internet. Not alot, I

think just enough for some people to get the wrong idea.

I understand you were pretty much talking in theory, though...........so my

thoughts are just showing why that might not be the case.

Me

Nebraska, USA

mymocha@...

, i remember her nrsgn telling us one

> theory on her type of TSC (lipomyelomeningocele.. closed spine)....some

Dr.s will tell you TSC alone is a type of SB......but

> when i think of SB...i think of the open spine form......so, in " theory "

> Marlee came " this close " to having SB as well.

[Guest guest]

From what I know, Lipomyelomeningocele is a form of Spina

Bifida...........so, from my view, I would have to say she has Spina Bifida,

and is just not close to it. But I think when people hear about Spina

Bifida, especially those who don't know much about it, they think of the

Open form and severe Deformity. I only say this because you did say she,

well in your words..... " her type of TSC (lipomyelomeningocele.. closed

spine) " .

I have never heard of a Dr., one of mine, in person, ever referring to

Tethered Cord as Spina Bifida..........but seperate problems, which they

are. However, I have heard some reference to it on the Internet. Not alot, I

think just enough for some people to get the wrong idea.

I understand you were pretty much talking in theory, though...........so my

thoughts are just showing why that might not be the case.

Me

Nebraska, USA

mymocha@...

, i remember her nrsgn telling us one

> theory on her type of TSC (lipomyelomeningocele.. closed spine)....some

Dr.s will tell you TSC alone is a type of SB......but

> when i think of SB...i think of the open spine form......so, in " theory "

> Marlee came " this close " to having SB as well.

[Guest guest]

Yes, I definately do. I agree.

No, I know you didn't say that...........but I think that is how the general

public views it, if they don't have any real connection or idea of what it

is about..............they think it is always scary and

horrible..........and it isn't always like that.

In my opinion, I would say she has both...........Lipomyelomeingocele which

inevitably led to Tethered Cord. I think that is how others with the same

view it, atleast from what I have heard. Yes, that is correct.

It is ashame about Insurance, isn't it?

I know. Sometimes I feel like this is new to me also.........there is always

something new that pops up.

Me

Nebraska, USA

mymocha@...

...so you see how easy it can be for a patient or parent of a

> patient to be mislead? i guess the best we can do is research on our

> own....and take it from that point.

> when i referred to the open spine form of SB...i wasn't referring to any

> Degree of deformity at all...

>

> so...in your " opinion " which is it..........TSC or SB.....let's say in

> Marlee's case. but, in her case the SB caused the

> tether....correct.

>

> and keep in mind....i am.....new to all this!

[Guest guest]

so if one has that fatty tumor thing with the tether that is a something

menigocele?

Di

[Guest guest]

so if one has that fatty tumor thing with the tether that is a something

menigocele?

Di

[Guest guest]

so if one has that fatty tumor thing with the tether that is a something

menigocele?

Di

[Guest guest]

Yeah, sort of....... there is Lipomeningocele and Lipomyelomeningocele.

But yet then you can have a real small Lipoma like me, and it not be

associated with your Tether. So I still have Myelomeningocele with a Lipoma.

I think I may have confused myself. lol

Hope that helps.

Me

Nebraska, USA

mymocha@...

> so if one has that fatty tumor thing with the tether that is a something

> menigocele?

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[Guest guest]

Yeah, sort of....... there is Lipomeningocele and Lipomyelomeningocele.

But yet then you can have a real small Lipoma like me, and it not be

associated with your Tether. So I still have Myelomeningocele with a Lipoma.

I think I may have confused myself. lol

Hope that helps.

Me

Nebraska, USA

mymocha@...

> so if one has that fatty tumor thing with the tether that is a something

> menigocele?

---

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[Guest guest]

Yeah, sort of....... there is Lipomeningocele and Lipomyelomeningocele.

But yet then you can have a real small Lipoma like me, and it not be

associated with your Tether. So I still have Myelomeningocele with a Lipoma.

I think I may have confused myself. lol

Hope that helps.

Me

Nebraska, USA

mymocha@...

> so if one has that fatty tumor thing with the tether that is a something

> menigocele?

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

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