Re: Myelomeningocele vs. Spina Bifida Occulta

[Guest guest]

Just to hopefully help clarify.....I just got a copy of Marlee's operative

report. Her diagnosis is listed as Spinal Lipomyelomeningocele and tethered

spinal cord we were also told this is SBO. Some (new) friends of ours had a

baby just a few weeks after Marlee with the open spine form of Spina Bifida

and her diagnosis was Myelomeningocele. According to Misty, her mother,

there was no lipoma present. Just a large water (CSF?) filled cyst at the

base of her open spine. She has to be cathed every four hours so far. I

know her prognosis was not as positive as Marlee's.

I am told all forms of SB, be it open or closed cause a wide range of

problems. To quote her nrsgn " No two kids with this condition are alike, it

depends alot on what nerves are affected. "

Hope I am helping this time!!!! : )

Re: Myelomeningocele vs. Spina Bifida Occulta

> No, Kelli.........that is not what I meant.

>

> I was just talking about straight Myelomeningocele, the form without the

> Lipoma. Myelomeningocele is the open form of Spina Bifida. It is the most

> severe forms of Spina Bifida, yet, not everybody is affected the same way,

> not everybody gets all the problems associated with it..........such as

> myself.

>

> Lipomyelomeningocele and Lipomeningocele seem to be in a category all by

> themselves.

>

> Hope this is alittle bit more clear. I didn't mean to confuse anybody.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > > I have Lipomyelomeningocele and my spine was not open when I was born.

> Don't

> > > know if this is what you mean by open.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

Just to hopefully help clarify.....I just got a copy of Marlee's operative

report. Her diagnosis is listed as Spinal Lipomyelomeningocele and tethered

spinal cord we were also told this is SBO. Some (new) friends of ours had a

baby just a few weeks after Marlee with the open spine form of Spina Bifida

and her diagnosis was Myelomeningocele. According to Misty, her mother,

there was no lipoma present. Just a large water (CSF?) filled cyst at the

base of her open spine. She has to be cathed every four hours so far. I

know her prognosis was not as positive as Marlee's.

I am told all forms of SB, be it open or closed cause a wide range of

problems. To quote her nrsgn " No two kids with this condition are alike, it

depends alot on what nerves are affected. "

Hope I am helping this time!!!! : )

Re: Myelomeningocele vs. Spina Bifida Occulta

> No, Kelli.........that is not what I meant.

>

> I was just talking about straight Myelomeningocele, the form without the

> Lipoma. Myelomeningocele is the open form of Spina Bifida. It is the most

> severe forms of Spina Bifida, yet, not everybody is affected the same way,

> not everybody gets all the problems associated with it..........such as

> myself.

>

> Lipomyelomeningocele and Lipomeningocele seem to be in a category all by

> themselves.

>

> Hope this is alittle bit more clear. I didn't mean to confuse anybody.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > > I have Lipomyelomeningocele and my spine was not open when I was born.

> Don't

> > > know if this is what you mean by open.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

Hi Brande,

My information states that Meningomyelocele is the most severe form of Spina

Bifida. But there is another that is very rare, I can't think of the name at

this moment but my nephew's baby died from it as soon as she was born.

Cherie

Subject: Re: Myelomeningocele vs. Spina Bifida Occulta

> No, Kelli.........that is not what I meant.

>

> I was just talking about straight Myelomeningocele, the form without the

> Lipoma. Myelomeningocele is the open form of Spina Bifida. It is the most

> severe forms of Spina Bifida, yet, not everybody is affected the same way,

> not everybody gets all the problems associated with it..........such as

> myself.

>

> Lipomyelomeningocele and Lipomeningocele seem to be in a category all by

> themselves.

>

> Hope this is alittle bit more clear. I didn't mean to confuse anybody.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > > I have Lipomyelomeningocele and my spine was not open when I was born.

> Don't

> > > know if this is what you mean by open.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

Hi Brande,

My information states that Meningomyelocele is the most severe form of Spina

Bifida. But there is another that is very rare, I can't think of the name at

this moment but my nephew's baby died from it as soon as she was born.

Cherie

Subject: Re: Myelomeningocele vs. Spina Bifida Occulta

> No, Kelli.........that is not what I meant.

>

> I was just talking about straight Myelomeningocele, the form without the

> Lipoma. Myelomeningocele is the open form of Spina Bifida. It is the most

> severe forms of Spina Bifida, yet, not everybody is affected the same way,

> not everybody gets all the problems associated with it..........such as

> myself.

>

> Lipomyelomeningocele and Lipomeningocele seem to be in a category all by

> themselves.

>

> Hope this is alittle bit more clear. I didn't mean to confuse anybody.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > > I have Lipomyelomeningocele and my spine was not open when I was born.

> Don't

> > > know if this is what you mean by open.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

Hi Brande,

My information states that Meningomyelocele is the most severe form of Spina

Bifida. But there is another that is very rare, I can't think of the name at

this moment but my nephew's baby died from it as soon as she was born.

Cherie

Subject: Re: Myelomeningocele vs. Spina Bifida Occulta

> No, Kelli.........that is not what I meant.

>

> I was just talking about straight Myelomeningocele, the form without the

> Lipoma. Myelomeningocele is the open form of Spina Bifida. It is the most

> severe forms of Spina Bifida, yet, not everybody is affected the same way,

> not everybody gets all the problems associated with it..........such as

> myself.

>

> Lipomyelomeningocele and Lipomeningocele seem to be in a category all by

> themselves.

>

> Hope this is alittle bit more clear. I didn't mean to confuse anybody.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > > I have Lipomyelomeningocele and my spine was not open when I was born.

> Don't

> > > know if this is what you mean by open.

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

>

[Guest guest]

To my knowledge, not all forms of Spina Bifida can be Open or Closed.

Occulta is the closed form, and Myelomeningocele is the opened from, and it

can be open to varying degrees. Those are the 2 Biggies, it

seems......however, there are other forms of Spina Bifida that I did not

mention.

I have Myelomeningocele..........it was Open, but I did not have the Bubble

that most have. What I had looked like a real bad opened Rug Burn. I also

have a small, very small Lipoma that formed over time........it was found

when I was 20, before they did my last Detethering. They did not remove it

during the Detethering, as it was not part of the Tether.

Very true what you say here............no 2 people with Spina Bifida are

exactly the same. I believe that goes for all forms of Spina Bifida. But I

know it is definately true for people with Myelomeningocele.

Just Brande again giving more information.

Me

Nebraska, USA

mymocha@...

> I am told all forms of SB, be it open or closed cause a wide range of

> problems. To quote her nrsgn " No two kids with this condition are alike,

it

> depends alot on what nerves are affected. "

>

[Guest guest]

To my knowledge, not all forms of Spina Bifida can be Open or Closed.

Occulta is the closed form, and Myelomeningocele is the opened from, and it

can be open to varying degrees. Those are the 2 Biggies, it

seems......however, there are other forms of Spina Bifida that I did not

mention.

I have Myelomeningocele..........it was Open, but I did not have the Bubble

that most have. What I had looked like a real bad opened Rug Burn. I also

have a small, very small Lipoma that formed over time........it was found

when I was 20, before they did my last Detethering. They did not remove it

during the Detethering, as it was not part of the Tether.

Very true what you say here............no 2 people with Spina Bifida are

exactly the same. I believe that goes for all forms of Spina Bifida. But I

know it is definately true for people with Myelomeningocele.

Just Brande again giving more information.

Me

Nebraska, USA

mymocha@...

> I am told all forms of SB, be it open or closed cause a wide range of

> problems. To quote her nrsgn " No two kids with this condition are alike,

it

> depends alot on what nerves are affected. "

>

[Guest guest]

I have to disagree, sorry. To my knowledge all spina bifida is

either aperta (open) or occulta (closed). Once I looked into it,

and counted up around 15 different types of neural tube defects.

(Don't ask me to name them all - I'm much more fuzzy minded now!)

But that includes brain conditions too, not just spine.

> > I am told all forms of SB, be it open or closed cause a wide

range of

> > problems. ... it

> > depends alot on what nerves are affected. "

That's true - depends on the number of vertebra involved, and the

amount of neural tissue, ranging from none, thru just the meninges

and/or the nerves, to the spinal cord itself coming outside

the " hole " in the bones.

Then, when you layer tethered cord on top of all that - which gives

you damage that is accumulated over time.... gee whiz!

Another comment (the kids are in bed early tonight) - according to

my research, more journal authors list pain as much more a problem

for adults than for children.

V