(No subject)

[Guest guest]

Did the neurosurgeon order a myelogram? That can show things more

clearly than an MRI. The symptoms you describe sound serious, and

not things to let slide by. I know that in my case, the MRI wasn't

nearly as definitive as the myelogram. Also, it might be possible

for the neurosurgeon or a radiologist to note things that are not normal

and indicative of a tethered cord without specifically pointing to it.

A spinal canal that's unusually wide, or a filum terminale that's unusually

thick, or a lipoma, or a cyst, or other things could be indicative of a

problem.

Also, the cord doesn't actually have to be tethered for there to be

neurological problems like you describe. A lipoma or cyst could be

impinging on nerves. And I know that I'm nowhere hear including all

the possibilities.

Another consideration is that the "normal" MRI may not have been normal.

Mine, which clearly showed a tethered cord, was misread by the radiologist.

Perhaps a second opinion would be in order.

I wish you all the best in getting the help she needs.

Having to fight with an insurance company under such a circumstance is

horribly frustrating. At the same time, though, perhaps more thorough

testing should be done anyway to try to pinpint exactly what's going on.

-- Heidi

kmillertime01@... wrote:

Hi, I have a five year old daughter named

. About a year and a half

ago we noticed had much trouble with bladder control and

was having

several accidents per day. We made an appointment with

a urologist who

diagnosed with Spina Bifida Occulta. It is not severe

and has

no markings on her back as is common with SB occulta. She

does however have

other problems such as tingly feet, some leg pain, and pain in

the back of

her head. She had an MRI that did not show any tethering

of her cord. The

neurosurgeon we consulted feels that it is Tethered Spinal Cord

Occulta. She

has so many symptoms consistent with tethered cord and after MUCH

research we

had decided to go ahead with a cord release surgery. Well,

to make a long

story short, our Insurance company denied the procedure because

of the normal

MRI. As of now we are appealing their decision because we

want all options

open to us. We are not sure if doing surgery is the right thing

in 's

case. She seems healthy and is very active. I'm really

hoping to get some

advise from anyone that has had a similar situation. We got

a second opinion

from a Doctor that is head of a well known Spina Bifida clinic.

He felt it

is in her best interest to do the surgery. I would greatly

appreciate any

info you all may have. Thank You.

[Guest guest]

Hi Tracey and welcome to the group. We all can relate to what you are

going through and understand the relief knowing you are not alone. It

took me over 20 years before I knew this was actually real! I hope

you can find things here that will help you cope a bit better! Best

wishes.

Darlene

>

> Hi everybody

>

> My name is Tracey and Im a new member, also this is the first forum

type group I have ever joined.

>

> I am looking forward to talking to you all and getting some

understanding of what I experience.  I am already relieved to see

there are others who suffer from this.  I thought I was just the world

biggest most intolerant person.

>

> My sensitivity started, I think, around the time I was 12 or 13 and

my mothers boyfriend used to make me stay at the table and wait until

he had finished eating.  I hated the man but at the same time felt

sorry for him and powerless.  Over the years it has spread to more

people and situations although some days it doesnt bother me much at all.

>

> It causes stress is my relationship as sometimes when my beloved

makes noises in my ear I instantly feel rage and hatred and give

himthe most unkind hateful looks.

>

> Ironically, I have to go now - dinner time.  Hopefully one day I

will be able to say that with pleasure and enjoy a family dinner lik

e' normal' people.

>