Re: Re: tethered cord possible sb

July 29, 2004

I know others have disagreed with what your Dr. said here, and I just want

to say that I agree with the people who disagreed. Maybe it is on a lesser

degree, but there are those out there with Tight or Fatty Filum Terminale

that do need the Surgery, and do well from it.

Me

Nebraska, USA

mymocha@...

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.

July 29, 2004

Brande,

Thanks so much for your input. Actually, you are the only one I have heard from

about this. If others have disagreed, I have not heard from them. But, I realize

that doctors " practice " medicine, so it makes sense that if neurosurgeons can

disagree on tethering, then certainly those of us who are much less educated in

the field will disagree as well. Only time will tell with my daughter. I feel

fortunate that we are in the Dallas Fort Worth area and have such great

children's doctors availble to us. My daughter is just doing so well now, I

really believe that she is on the road to full recovery!

Thanks again for sharing and have a great day!

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

I know others have disagreed with what your Dr. said here, and I just want

to say that I agree with the people who disagreed. Maybe it is on a lesser

degree, but there are those out there with Tight or Fatty Filum Terminale

that do need the Surgery, and do well from it.

Me

Nebraska, USA

mymocha@...

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.

Not Medical Advice. We Are Not Doctors.

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

rick@...

July 30, 2004

Dear

Your nsg's statement 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 " is, if you

don't mind me saying, is a total load of rubbish!!!!!!!

My detethering for thickened filum terminale (TFT) with spina bifida

occulta was at the age of 35, BUT I had had all the signs and symptoms

since the age of 2. In the 1960s they didn't have the technology and

surgical skills and know-how to either diagnose or detether TFT, and as

I could walk, nothing was ever said about a problem with my back,

despite my feet and lower legs becoming deformed from the age of 2.

An adult detethering of TFT is *very* necessary if the patient is

losing function (motor, walking, gait, stability etc etc) and bladder

control is going wrong. I was told only at the end of June on the

annual follow-up, that I had about 6 months left in 2001 of all that

function and control, due to " a deterioration in the condition of the

spinal cord due to a TFT " .

The deterioration is not actually in the TFT. It is due to the fibrous

nature of the filum that stretches the cord, which starves it of oxygen

and nerve impulses are compromised, thus leading to the deterioration.

Also the physical act of stretching something that should be nice and

flexible causes mechanical wear and tear and shear on the tissues,

thereby causing further (possibly) irreparable damage to the cord

I am one of the lucky ones - my situation was appraised by the

neurosurgeon quickly and accurately, and despite the wait on the UK

National Health System, the surgery was done asap (9 months later). I

am, as Brande says, one of the ones who has done well from the surgery -

after all I can still walk (after a fashion)!!!!

Hope your little one is getting on OK

best wishes

Nina

Bristol, UK

Quoting lefondren@...:

> Brande,

> Thanks so much for your input. Actually, you are the only one I have

> heard from about this. If others have disagreed, I have not heard

> from them. But, I realize that doctors " practice " medicine, so it

> makes sense that if neurosurgeons can disagree on tethering, then

> certainly those of us who are much less educated in the field will

> disagree as well. Only time will tell with my daughter. I feel

> fortunate that we are in the Dallas Fort Worth area and have such

> great children's doctors availble to us. My daughter is just doing so

> well now, I really believe that she is on the road to full recovery!

>

> Thanks again for sharing and have a great day!

>

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

> I know others have disagreed with what your Dr. said here, and I just

> want

> to say that I agree with the people who disagreed. Maybe it is on a

> lesser

> degree, but there are those out there with Tight or Fatty Filum

> Terminale

> that do need the Surgery, and do well from it.

>

> Me

> Nebraska, USA

> mymocha@...

>

> 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.

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

> rick@...

>

July 30, 2004

Nina,

Wow! It sounds like you have had a very hard time. That is terrible. But, I am

so glad that your condition was corrected. How sad that there was no way to

diagnose TC in the 1960s. Medicine has come so far, hasn't it?! I can't imagine

a 9 month wait for my daughter or for anyone, but the good news is that you are

doing better and that's the important thing!

Thank you so much for sharing your opinions. And, for your well wishes for my

daughter!

Yes, we do think a lot of our doctor. He has been so helpful and supportive

through all of this.

Wishing you the best now and always,