Re: Possible Retethered cord..Those who have/had one, your symptoms/res...

December 26, 2008

Hi ...So sorry to hear about this return of symptoms. I don't know how

they can say there is no retether based on the MRI though lots of people are

told this. My understanding is that the MRI is of limited utility since it

will always appear tethered though there are some who can tell you about

another kind, the cine?, which maybe can tell better if the spinal cord is

moving

freely. If you don't have confidence in your Neurosurgeons opinion, seek

another. Usually, retether is diagnosed by symptoms. Good luck. Let us know

what happens. Randee

In a message dated 12/26/2008 9:07:42 A.M. Eastern Standard Time,

gatorshime_2000@... writes:

I had Spinal tumor surgeries 5/01 and 12/04, MRSA surgery 12/23/04 and

Tethered Cord surgery 8/07 so I have a lot of scar tissue around. I

have a pain pump also, 1st one 10/02 and new one 1/08. My symptoms

really changed the past two months:

Both legs are very heavy and tight, walking is very hard these days.

They are weak compared to 6 months ago. My right leg from the knee

down feels like it has a heavy weight attached to it and the ankle is

really heavy. My back is the worse and the only relief I get is by

leaning over so my wife and family keep telling me to stand up

straight. Trouble with bladder also. Bowels have been a bad problem

since 2001. I scared and dont know what to do. Last MRI was Sept. 08

and they said no tethered cord. Next one is middle of Jan. 09. I dont

know where to turn and I'm scared. Anyone else's symtptoms or advice?

Thanks,

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December 29, 2008

Hello --

Happy Holidays. I'm sorry to hear you've had a relapse of symptoms

since your surgery. If you do not have confidence in your

neurosurgeon please seek out another opinion and find one that is

knowledgable with regard to TSC and it's treatment & symptoms. It's

of the utmost importance that you, yourself feel secure and confident

in the treatment you receive. And yes, Randee is correct with regard

to the MRI being a semi-useful diagnostic tool. Have you had a CAT

scan or MRI with contrast? Is something to think about.

Keeping you in my thoughts. Do write again and let us know how you're

doing.

Best Wishes ..

(Moderator)

>

> Hi ...So sorry to hear about this return of symptoms. I

don't know how

> they can say there is no retether based on the MRI though lots of

people are

> told this. My understanding is that the MRI is of limited utility

since it

> will always appear tethered though there are some who can tell you

about

> another kind, the cine?, which maybe can tell better if the spinal

cord is moving

> freely. If you don't have confidence in your Neurosurgeons

opinion, seek

> another. Usually, retether is diagnosed by symptoms. Good luck.

Let us know

> what happens. Randee

>

> In a message dated 12/26/2008 9:07:42 A.M. Eastern Standard Time,

> gatorshime_2000@... writes:

>

> I had Spinal tumor surgeries 5/01 and 12/04, MRSA surgery 12/23/04

and

> Tethered Cord surgery 8/07 so I have a lot of scar tissue around.

I

> have a pain pump also, 1st one 10/02 and new one 1/08. My symptoms

> really changed the past two months:

>

> Both legs are very heavy and tight, walking is very hard these

days.

> They are weak compared to 6 months ago. My right leg from the knee

> down feels like it has a heavy weight attached to it and the ankle

is

> really heavy. My back is the worse and the only relief I get is by

> leaning over so my wife and family keep telling me to stand up

> straight. Trouble with bladder also. Bowels have been a bad

problem

> since 2001. I scared and dont know what to do. Last MRI was Sept.

08

> and they said no tethered cord. Next one is middle of Jan. 09. I

dont

> know where to turn and I'm scared. Anyone else's symtptoms or

advice?

>

> Thanks,

>

> **************One site keeps you connected to all your email: AOL

Mail,

> Gmail, and Yahoo Mail. Try it now.

> (http://www.aol.com/?optin=new-

dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)

>

December 29, 2008

Don't quit! My daughter started complaining of bad h.a. and would fall to floor

in pain. She was 14yrs. Dr. sent her for MRI, I was told no problems. This went

on for almost a year. This Dr. told me to take her to pysh. Dr. I knew she was

not crazy or wanting attn. So I took her to nero. Dr. On the very same MRI's He

said she needed brain and spine surg. for A.C.M. also her t-8-t9 and t12-L1 disc

bulging compressing spinal cord. They keep delaying this surg. because risk is

so great. They say it will have to be done one day or it will sever her cord.

Now they are also saying tethered cord. DRS.. say they have never seen a back

this bad in 20yr.old with no explaintion as to how her back got in this shape.

So there is muli-problems unconnected with no explainations. I don't question

God, but I do pray for some kind of life for her one day free from pain. She

really doesn't complain but you can see the pain in her face everytime she

moves.

________________________________

To: tetheredspinalcord

Sent: Friday, December 26, 2008 9:35:09 AM

Subject: Re: Possible Retethered cord..Those who have/had one, your

symptoms/res...