Re: tethered cord possible sb

July 9, 2004

Brande,

Since the surgery, we have had a chance to talk with Sydney's neurosurgeon and

he said she does not have spina bifida. He said hers was simply a filum

terminale and will not retether. He also mentioned that he has heard of adults

having detethering for this filum terminale and in his opinion it is

unnecessary, that it is a situation that only needs correcting in infants. I

can tell you that Sydney is sooo much better even the day after her surgery. Up

to even the day before the surgery she was walking and tripping over her own

feet constantly...taking only 3-4 steps then falling, getting up and falling

again, all day long. Then she would obviously become fatigued and need to rest,

either laying down or being held. Just as a reminder, she was 16 months old

last month when she had her detethering surgery. Surgery on Monday morning and

home Wednesday morning...walking, almost running, playing and not tripping over

her feet at all. We are amazed! She obviously is not becoming fatigued and can

easily keep up now with her 2 1/2 year old sister.

I just love the support of this group and all the sharing with one another!

-------------- Original message --------------

Generally speaking, I would have to say that there is no

correlation. It might be more of a possiblity if it was higher up. Or if

there are other Conditions involved. But now that I see she *might* have

Spina Bifida (at the beginning I was only speaking of Tethered Cord), it is

more possible that she does have other Conditions involved, which can make

it more likely that the Speech *Delay* might be caused by all of this.

They should be able to tell if she has Spina Bifida by an MRI.

Keep us updated.

Me

Nebraska, USA

mymocha@...

> I would like to ask if there is any correlation between tethered cord and

speech development. Is there any relationship to this condition and speech

delay? > I guess what I'm asking is, could there be other problems

associated with this tethering if it is tethered higher up on the cord?

>

> Also, when we went in for her pre op blood work, they considered her

having spina bifida, although her doc said it was only " in the family " of

spina bifida. We do not know. Does she have spina bifida occulta and how do

we know?

>

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@...,

rick@...

July 9, 2004

Dear , can I just pass on my opinion that your nsg is *SO* wrong

about " simply a filum terminale ... He also mentioned that he has heard

of adults having detethering for this filum terminale and in his

opinion it is unnecessary, that it is a situation that only needs

correcting in infants. "

I had a " simple filum detethering " aged 35, as all the deterioration in

the condition of my cord (not my feet) occurred from the age of 33. I

had no surgery as a child. It was totally necessary to be done as an

adult as my cord was being more and more stretched, starved of oxygen

and only last week my nsg told me that I had about 6 months left of

walking if I had not had it detethered when I did.

It would be fortunate, and an ideal world, if all infants with a simple

filum tethering were operated on when small, but in the 1960s tethered

cords and the surgery were not even heard of, and I had to learn the

hard way what the tethering does to feet, legs, pain etc etc.

Good to hear that your little girl has benefitted from the surgery -

hope she continues to improve

Regards

Nina

Bristol, UK

Quoting lefondren@...:

> Brande,

> Since the surgery, we have had a chance to talk with Sydney's

> neurosurgeon and he said she does not have spina bifida. He said hers

> was simply a filum terminale and will not retether. He also mentioned

> that he has heard of adults having detethering for this filum

> terminale and in his opinion it is unnecessary, that it is a

> situation that only needs correcting in infants. I can tell you that

> Sydney is sooo much better even the day after her surgery. Up to even

> the day before the surgery she was walking and tripping over her own

> feet constantly...taking only 3-4 steps then falling, getting up and

> falling again, all day long. Then she would obviously become fatigued

> and need to rest, either laying down or being held. Just as a

> reminder, she was 16 months old last month when she had her

> detethering surgery. Surgery on Monday morning and home Wednesday

> morning...walking, almost running, playing and not tripping over her

> feet at all. We are amazed! She obviously is not becoming fatigued

> and can easily keep up now with her 2 1/2 year old sister.

> I just love the support of this group and all the sharing with one

> another!

>

> -------------- Original message --------------

> Generally speaking, I would have to say that there is no

> correlation. It might be more of a possiblity if it was higher up. Or

> if

> there are other Conditions involved. But now that I see she *might*

> have

> Spina Bifida (at the beginning I was only speaking of Tethered Cord),

> it is

> more possible that she does have other Conditions involved, which can

> make

> it more likely that the Speech *Delay* might be caused by all of

> this.

>

> They should be able to tell if she has Spina Bifida by an MRI.

>

> Keep us updated.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > I would like to ask if there is any correlation between tethered

> cord and

> speech development. Is there any relationship to this condition and

> speech

> delay? > I guess what I'm asking is, could there be other problems

> associated with this tethering if it is tethered higher up on the

> cord?

> >

> > Also, when we went in for her pre op blood work, they considered

> her

> having spina bifida, although her doc said it was only " in the

> family " of

> spina bifida. We do not know. Does she have spina bifida occulta and

> how do

> we know?

> >

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

> rick@...

>

July 10, 2004

Nina,

Of course I appreciate you sharing your opinion. I am amazed at all the

differin gopinions on this subject. Differing at levels among NSG and among

patients as well. I know you are right about the 60's and probably no one even

knowing about this condition. I have a friend who has horrible, horrible back

pain and spasms and also has sever hammer toes. I would bet that he too suffers

from tethered cord. He was born in the 50's and I doubt that he has ever had a

check by a nerologist or an MRI. Since he drives a truck, the back pain is

associated with the prolonged hours of sitting behind the wheel. He also has

extreme urgency for urination at times which I always thought was odd. He would

say " I have to go NOW " , and he really meant it. Perhaps that is also part of

the symptoms. I am tempted to write and tell him of this tetherd cord and

perhaps asking him to try and get a medical ruling on it.

Thanks again, Nina for your input!