and Cindy

[Guest guest]

>

> HI I WAS BRN WITH SB AND HAD SURG.@B... FINE TIL BOUT 4-

> 5YRS.AGO.I HAD MY FIRST UNTETHERING IN JAN.04@SEMMES MURPHY IN

> MEMPHIS,TN.DOC IS HIGHLY INTELLEGENT BUT EXPLAINS NOTHING AND TOLD

> ME THERE WAS NOTHING I COULD DO TO TETHER MY SPINE AGAIN.I WAS

> LEAKING SPINAL FLUID WHICH HE SAID HE FIXED!ALSO WAS TOLD I HAD A

> H... OF AN ANATOMY!APPARENTLY A DOUBLE SPINE.I HAVE HAD HARDLY ANY

> RELEIF!SPINE STILL SWELLS OUT JUST LIKE WHEN I HAD LEAKAGE.PAIN IS

> STILL HORRIFIC!LOST SOME NERVES IN RT. LEG AND FOOT IN SURG.NOW IT

Hi and ,

Welcome to the group, although we are all sorry for the reason that

you found us.

Many of us in this group have many of the symptoms that you both

have.

, I was also born in 1958 and didn't have symptoms of tethered

cord until I was around age 40.

I had detethering surgery in May 2002. My MRI showed a tight,

fatty filum terminale, which may be the least risky type of tether

as far as surgery goes. During the surgery, it was discovered that I

have adhesive arachnoiditis of the cauda equina, i.e. all of the

nerves at the bottom of my spinal cord are adhered to the arachnoid

layer of the dura by scar tissue and is inoperable due to the high

risk of worse nerve damage than what I already have.

I do not regret having the surgery that I had, even though some of

my problems have worsened since then. The problems would have

worsened anyway without the surgery, maybe just not quite as

quickly. Before I had the surgery, I had hopes of improvement, which

was difficult because of the realization that improvement was

definitely not going to happen, but I at least know where I stand,

what is wrong and I can move forward, learning how to deal with the

symptoms that I have.

If I were to go back in time, I would always make my decision to

have the surgery, because of the possibility of improvement and

halting the progression of symptoms.

Many of us on this list also have upper body symptoms. My

neurosurgeon has worked with me to eliminate most possible causes of

upper body symptoms other than tethered cord. The cause is still

unknown (in his mind), but I think that it is related to the

tethered cord.

I hope you both get great feedback from our group, I know that many

times it has been a lifesaver for me (especially for easing my mind

and helping to fight the depression).

Take care,

V.

Ontario, Canada

P.S. to : Typing all caps on e-mail is considered the

equivalent of yelling, besides that, it is harder to read. I hope

this helps for you to get more answers from e-mail groups.