Worried- MRI retether

[Guest guest]

Dr. Frim wants me to come in for an MRI to make sure I have not retethered, I

know he told me before it would be a less than 10% chance.My legs have been

acting super weird lately, I can't walk down the stairs, esp. on my right leg,

it just shakes, and I am getting cramps daily now.The other thing is EXTREME

burning on occasion. I get it where I cannot stand, period. It's that bad.

I do have, and have had some leg issues since last year prior to surgery,

electric pain, burning, weird cramping/feeling like I have been hit, weakness

etc.. but this is all NEW.

Has anyone retethered and what were your symptoms? I'm scared of even making

that appointment

[Guest guest]

Hi ,

I have retethered and am going in for another MRI on Monday for symptoms

similiar to yours. They were the same with my retether so I bit the bullet and

made the appointment. It is scary but what is worse is putting it off. The

longer you put it off the more damage is done if you retether. I will say for me

the second surgery wasn't as bad as the first.

To: tetheredspinalcord

From: lilacs007@...

Date: Wed, 23 Nov 2011 00:57:03 -0800

Subject: Worried- MRI retether

Dr. Frim wants me to come in for an MRI to make sure I have not

retethered, I know he told me before it would be a less than 10% chance.My legs

have been acting super weird lately, I can't walk down the stairs, esp. on my

right leg, it just shakes, and I am getting cramps daily now.The other thing is

EXTREME burning on occasion. I get it where I cannot stand, period. It's that

bad.

I do have, and have had some leg issues since last year prior to surgery,

electric pain, burning, weird cramping/feeling like I have been hit, weakness

etc.. but this is all NEW.

Has anyone retethered and what were your symptoms? I'm scared of even making

that appointment

[Guest guest]

Yes ,

I have this 24/7

But the MRI shows no change. (for 16 years now)

You leg is unstable by posseble nerve problem.

By me after al this years it filum terminale is not thickened but just

tighter.

I have a appointment Nov. 28th Maby you should ask Dr. Firm about this.

If that is even worse and a possebility. The problem is that this can't not

be seen very good.

A thickened filum is more easy.

Hope this will a explaination about the pain, I realy don't but it is worth

to ask.

Jan Willem

-----Oorspronkelijk bericht-----

From: Dybowski

Sent: Wednesday, November 23, 2011 9:57 AM

To: Tetheredspinalcord

Subject: Worried- MRI retether

Dr. Frim wants me to come in for an MRI to make sure I have not retethered,

I know he told me before it would be a less than 10% chance.My legs have

been acting super weird lately, I can't walk down the stairs, esp. on my

right leg, it just shakes, and I am getting cramps daily now.The other thing

is EXTREME burning on occasion. I get it where I cannot stand, period. It's

that bad.

I do have, and have had some leg issues since last year prior to surgery,

electric pain, burning, weird cramping/feeling like I have been hit,

weakness etc.. but this is all NEW.

Has anyone retethered and what were your symptoms? I'm scared of even making

that appointment

[Guest guest]

,

Any neuro decline should be investigated for a retether.

I retethered approximately 4 months after surgery #1. My only symptom as

the same as with my initial tether - pain (in lumbar area, buttocks, and

down both legs).

The surgeon Dx me with arachnoiditis (visual confirmation when he was in

there for the second surgery). After surgery #2, I developed neuropathy and

I lost a little function in (I believe) my left leg. I was able to restore

my leg function with PT. About 2 months post-op, the neuropathy that had

died down started getting worse again. I also started losing strength in

both my legs (I was still in post-op PT for strengthening at this point).

That progressed to bilateral foot drop and I started using bilateral AFOs.

The weakness continued to progress VERY rapidly. by 3.5 - 4 months post-op,

and was barely able to walk with bilateral AFOs and forearm crutches. At

this point the pain was worse than it was going into the previous 2

surgeries and my spasticity was through the roof. The MRI revealed I had

developed hydrosryingomyelia.

I know Frim said your risk of retether is <10%, but I really wonder what

the actual rate of retether is. When I did a search in peer-reviewed

journals for the rate a while back, there was very little documentation on

this - *especially* in adults. The problem, is that no one has done a

longitudinal research collecting data from surgical outcomes and follow up

appointments. Better yet would be a longitudinal nested case-control study

with adult and pedi cohorts (with patients who chose to not have surgery as

the control and those that elected to have untethering surgery as the

cases). This study would provide better results because adults would be

match with other adults and pedi with pedi (as opposed to pedi and adults

being lumped in the same cohorts when it seems that outcomes differ for

both groups. Meaning, adults are better off leaving well enough alone if

they don't have neuro decline, whereas kids are recommended to have

prophylactic surgery to prevent neuro decline because growth spurts are

known to cause TC to become symptomatic. At least that is what the MDs seem

to think, although I've never seen such a study done). I would even like to

see a retrospective study done (using review of medical records). I have

yet to find one that, let alone one that uses a significant number of cases

in the study). And I would love to see the odds ratios or risk ratios for

adult and pedi cases and see if there is a difference (MDs proclaim that

there is a difference between the relative risk for adults and the relative

risk for pedi retether, with many MDs saying there is no risk of retether

in adult patients. But I suspect that this is just based on their own

anecdotal observation of patients in their own clinic; therefore, if that

surgeon had an adult patient retether, then adults don't retether).

[Hopefully I got my research methodology right. Been a while since I had

that class :-) ]

Nevertheless, if you are noticing neuro changes, then an MRI is the way to

go to rule out a symptomatic retether (it could be nothing, a symptomatic

retether, or it could also be a different problem like arachnoiditis or

hydrosyringomyelia). Regardless of the cause, the goal of surgery is to

stop the progressive losses, not to regain lost function. So if someone

waits until they need to cath to void or can't walk before seeking a new

MRI or surgical evaluation, then its pretty much too late to get those lost

functions back (not that restoration can't happen, but its unlikely, and

the goal of regaining lost function is an unrealistic goal for surgical

intervention). So, better to find out sooner than later if something is

going on.

Hopefully the MRI won't show anything serious.

Best wishes,

Jenn

{{{Happy Thanksgiving everyone!}}}

On Wed, Nov 23, 2011 at 3:57 AM, Dybowski wrote:

> **

>

>

> Dr. Frim wants me to come in for an MRI to make sure I have not

> retethered, I know he told me before it would be a less than 10% chance.My

> legs have been acting super weird lately, I can't walk down the stairs,

> esp. on my right leg, it just shakes, and I am getting cramps daily

> now.The other thing is EXTREME burning on occasion. I get it where I cannot

> stand, period. It's that bad.

> I do have, and have had some leg issues since last year prior to surgery,

> electric pain, burning, weird cramping/feeling like I have been hit,

> weakness etc.. but this is all NEW.

> Has anyone retethered and what were your symptoms? I'm scared of even

> making that appointment

>

>

>

[Guest guest]

Jan,

Dr. Frim e-mailed me that he wants a new MRI because of the leg changes

Subject: Re: Worried- MRI retether

To: tetheredspinalcord

Date: Wednesday, November 23, 2011, 6:50 AM

 

Yes ,

I have this 24/7

But the MRI shows no change. (for 16 years now)

You leg is unstable by posseble nerve problem.

By me after al this years it filum terminale is not thickened but just

tighter.

I have a appointment Nov. 28th Maby you should ask Dr. Firm about this.

If that is even worse and a possebility. The problem is that this can't not

be seen very good.

A thickened filum is more easy.

Hope this will a explaination about the pain, I realy don't but it is worth

to ask.

Jan Willem

-----Oorspronkelijk bericht-----

From: Dybowski

Sent: Wednesday, November 23, 2011 9:57 AM

To: Tetheredspinalcord

Subject: Worried- MRI retether

Dr. Frim wants me to come in for an MRI to make sure I have not retethered,

I know he told me before it would be a less than 10% chance.My legs have

been acting super weird lately, I can't walk down the stairs, esp. on my

right leg, it just shakes, and I am getting cramps daily now.The other thing

is EXTREME burning on occasion. I get it where I cannot stand, period. It's

that bad.

I do have, and have had some leg issues since last year prior to surgery,

electric pain, burning, weird cramping/feeling like I have been hit,

weakness etc.. but this is all NEW.

Has anyone retethered and what were your symptoms? I'm scared of even making

that appointment