RE: visit with adult neuro today

[Guest guest]

-- I have muscle wasting in a spot on both of my calves and loss of ankle

dorsiflexion in my left ankle. My left leg is also much weaker than my right

and smaller in diameter. What does he consider classic tc symptoms? I have

never had any major b & b issues but definately have a tethered cord.

Dee

To: tetheredspinalcord

From: sueradz@...

Date: Wed, 23 Mar 2011 23:32:11 +0000

Subject: visit with adult neuro today

I saw the adult neuro today, he took the time to explain the MRI to me and my

husband. He didn't see anything wrong with the structure of my spine and

believes I have a tethered cord right above where my scar is. He wants me to go

for a " bending " x-ray and CAT scan to rule out anything else that could be

compressing my cord. He will also speak with the pediatric neuro to discuss his

findings. He said I don't have the " classic " tsc symptoms, but it is very

evident from the muscle wasting in my calf and my ankle weakness that something

is definately compressing my cord and if it's not in the structure then it has

to be tethered.

[Guest guest]

I think the sciatic pain and lack of severe bladder/bowl issues is throwing them

off.  That's all I can think of.  What exactly are typical tsc symptoms?

Subject: RE: visit with adult neuro today

To: tetheredspinalcord

Date: Wednesday, March 23, 2011, 7:35 PM

-- I have muscle wasting in a spot on both of my calves and loss of ankle

dorsiflexion in my left ankle.  My left leg is also much weaker than my right

and smaller in diameter.  What does he consider classic tc symptoms?  I have

never had any major b & b issues but definately have a tethered cord.

Dee

To: tetheredspinalcord

From: sueradz@...

Date: Wed, 23 Mar 2011 23:32:11 +0000

Subject: visit with adult neuro today

 

I saw the adult neuro today, he took the time to explain the MRI to me and my

husband. He didn't see anything wrong with the structure of my spine and

believes I have a tethered cord right above where my scar is. He wants me to go

for a " bending " x-ray and CAT scan to rule out anything else that could be

compressing my cord. He will also speak with the pediatric neuro to discuss his

findings. He said I don't have the " classic " tsc symptoms, but it is very

evident from the muscle wasting in my calf and my ankle weakness that something

is definately compressing my cord and if it's not in the structure then it has

to be tethered.

                         

[Guest guest]

,

I am glad you are getting somewhere. Was he able to explain why Wisoff did not

see any of that?

>

> I saw the adult neuro today, he took the time to explain the MRI to me and my

husband. He didn't see anything wrong with the structure of my spine and

believes I have a tethered cord right above where my scar is. He wants me to go

for a " bending " x-ray and CAT scan to rule out anything else that could be

compressing my cord. He will also speak with the pediatric neuro to discuss his

findings. He said I don't have the " classic " tsc symptoms, but it is very

evident from the muscle wasting in my calf and my ankle weakness that something

is definately compressing my cord and if it's not in the structure then it has

to be tethered.

>

[Guest guest]

I'm so happy that you seem to have finally found a MD that is willing to get

to the bottom of this. I agree with Dee - if those aren't classic symptoms,

I'm not sure what is. You don't have to have b & b problems to have TC. You

don't have to have a form of SB either to have TC (although SBO is very

common over the tether - but there are certainly a LOT of people that don't

have any form of SB associated with their TC).

I'm just glad it sounds like you're finally moving in the right direction.

Hang in there.

Jenn

>

>

> I saw the adult neuro today, he took the time to explain the MRI to me and

> my husband. He didn't see anything wrong with the structure of my spine and

> believes I have a tethered cord right above where my scar is. He wants me to

> go for a " bending " x-ray and CAT scan to rule out anything else that could

> be compressing my cord. He will also speak with the pediatric neuro to

> discuss his findings. He said I don't have the " classic " tsc symptoms, but

> it is very evident from the muscle wasting in my calf and my ankle weakness

> that something is definately compressing my cord and if it's not in the

> structure then it has to be tethered.

>

>

>

[Guest guest]

Oh good!....I think...well, good that you found a doc that seems to know what

he's doing and is willing to communicate with others   Sorry to hear you are

tethered though.

Subject: visit with adult neuro today

To: tetheredspinalcord

Date: Wednesday, March 23, 2011, 6:32 PM

 

I saw the adult neuro today, he took the time to explain the MRI to me and my

husband. He didn't see anything wrong with the structure of my spine and

believes I have a tethered cord right above where my scar is. He wants me to go

for a " bending " x-ray and CAT scan to rule out anything else that could be

compressing my cord. He will also speak with the pediatric neuro to discuss his

findings. He said I don't have the " classic " tsc symptoms, but it is very

evident from the muscle wasting in my calf and my ankle weakness that something

is definately compressing my cord and if it's not in the structure then it has

to be tethered.

[Guest guest]

When I was Dx with TC, my only symptom was sciatic pain. There were a few

little things that I had since birth (no feeling in all my toes on my right

foot except my big toe and that foot is 1/2 size smaller; some urinary

problems with leaking when I coughed, laughed or sneezed and bowel urgency

[but I didn't know these weren't normal until later b/c MDs only asked if I

had any b & b problems. They never asked specifically if I had x or y problem,

and since I had been that way all my life, I assumed they happened to

everyone]. So, basically the only symptom when I was Dx was sciatic pain.

Jenn

On Wed, Mar 23, 2011 at 8:11 PM, susan radzilowicz wrote:

>

>

> I think the sciatic pain and lack of severe bladder/bowl issues is throwing

> them off. That's all I can think of. What exactly are typical tsc

> symptoms?

>

[Guest guest]

This all sounds too famliar. Until I was 10, I thought everyone had a lump at

their bottom of their spine. Why would I think I was any different? I don't

remember having a reflex in my right ankle. B & B urgency was just a part of

life...

In tetheredspinalcord , JBobin wrote:

>

> I'm so happy that you seem to have finally found a MD that is willing to get

> to the bottom of this. I agree with Dee - if those aren't classic symptoms,

> I'm not sure what is. You don't have to have b & b problems to have TC. You

> don't have to have a form of SB either to have TC (although SBO is very

> common over the tether - but there are certainly a LOT of people that don't

> have any form of SB associated with their TC).

>

> I'm just glad it sounds like you're finally moving in the right direction.

> Hang in there.

>

> Jenn

>

>

>

> >

> >

> > I saw the adult neuro today, he took the time to explain the MRI to me and

> > my husband. He didn't see anything wrong with the structure of my spine and

> > believes I have a tethered cord right above where my scar is. He wants me to

> > go for a " bending " x-ray and CAT scan to rule out anything else that could

> > be compressing my cord. He will also speak with the pediatric neuro to

> > discuss his findings. He said I don't have the " classic " tsc symptoms, but

> > it is very evident from the muscle wasting in my calf and my ankle weakness

> > that something is definately compressing my cord and if it's not in the

> > structure then it has to be tethered.

> >

> >

> >

>

>

>

[Guest guest]

The neuro called me yesterday and confirmed that he believes its a tethered cord

and needs to be untethered. I asked him if he has done release surgery before

and he said of course, on adults. He wants to touch base w/ ped neuro who

referred him and then we'll move forward deciding who is going to do the surgery

and when. The only thing that confused me was when I asked he if thought it was

tethered from the scar tissue he said he didnt think so. Is it possible that I

would still have a tethered cord from birth even though i have had surgery to

close my back? I'm very relieved that I have 2 different surgeon who came to

the same diagnosis. Now I just want to get it done.

> >

> > >

> > >

> > > I saw the adult neuro today, he took the time to explain the MRI to me and

> > > my husband. He didn't see anything wrong with the structure of my spine

and

> > > believes I have a tethered cord right above where my scar is. He wants me

to

> > > go for a " bending " x-ray and CAT scan to rule out anything else that could

> > > be compressing my cord. He will also speak with the pediatric neuro to

> > > discuss his findings. He said I don't have the " classic " tsc symptoms, but

> > > it is very evident from the muscle wasting in my calf and my ankle

weakness

> > > that something is definately compressing my cord and if it's not in the

> > > structure then it has to be tethered.

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

I would be sure to ask the adult nsg how many untetherings he has done.

That is important. My first surgery (TC w/diastematomyelia) was done by a

very good adult nsg. He had actually done another untethering

w/diastematomyelia (even more rare than just TC, especially that was not

caught as an infant). But he had only done 1 or 2 of them. He had only

done a total of 12 untetherings total. He told me that was a LOT because

nsgs rarely see or deal with TC in adults b/c it is corrected as an infant

or child.

Could your cord be tethered from birth? I suppose. Depends what surgery

they did as an infant. If they didn't know your cord was tethered and just

closed the opening, then sure, it could have been tethered and the TC was

never corrected. But, if they did a release as an infant, then its less

likely. Also depends what kind of tether you have. If it involves a lipoma,

and it was not removed completely, then when they did the initial surgery,

they may not have untethered you completely fearing they would risk neuro

deficits by proceeding. So, I guess the answer is possibly - depends.

Jenn

>

>

> The neuro called me yesterday and confirmed that he believes its a tethered

> cord and needs to be untethered. I asked him if he has done release surgery

> before and he said of course, on adults. He wants to touch base w/ ped neuro

> who referred him and then we'll move forward deciding who is going to do the

> surgery and when. The only thing that confused me was when I asked he if

> thought it was tethered from the scar tissue he said he didnt think so. Is

> it possible that I would still have a tethered cord from birth even though i

> have had surgery to close my back? I'm very relieved that I have 2 different

> surgeon who came to the same diagnosis. Now I just want to get it done.

>

[Guest guest]

I agree with Jenn, it could be from birth if they didnt catch it or thought it

too risky. The nsg that did my surgery had never done one before, I was DAMN

lucky! If I knew then what I knew now......LOL  Yes, ask how many he's done

It is good that they agree, always frustrating when getting different

opinions.  

________________________________

To: tetheredspinalcord

Sent: Sat, April 2, 2011 6:11:35 PM

Subject: Re: visit with adult neuro today

 

I would be sure to ask the adult nsg how many untetherings he has done.

That is important. My first surgery (TC w/diastematomyelia) was done by a

very good adult nsg. He had actually done another untethering

w/diastematomyelia (even more rare than just TC, especially that was not

caught as an infant). But he had only done 1 or 2 of them. He had only

done a total of 12 untetherings total. He told me that was a LOT because

nsgs rarely see or deal with TC in adults b/c it is corrected as an infant

or child.

Could your cord be tethered from birth? I suppose. Depends what surgery

they did as an infant. If they didn't know your cord was tethered and just

closed the opening, then sure, it could have been tethered and the TC was

never corrected. But, if they did a release as an infant, then its less

likely. Also depends what kind of tether you have. If it involves a lipoma,

and it was not removed completely, then when they did the initial surgery,

they may not have untethered you completely fearing they would risk neuro

deficits by proceeding. So, I guess the answer is possibly - depends.

Jenn

>

>

> The neuro called me yesterday and confirmed that he believes its a tethered

> cord and needs to be untethered. I asked him if he has done release surgery

> before and he said of course, on adults. He wants to touch base w/ ped neuro

> who referred him and then we'll move forward deciding who is going to do the

> surgery and when. The only thing that confused me was when I asked he if

> thought it was tethered from the scar tissue he said he didnt think so. Is

> it possible that I would still have a tethered cord from birth even though i

> have had surgery to close my back? I'm very relieved that I have 2 different

> surgeon who came to the same diagnosis. Now I just want to get it done.

>

[Guest guest]

I had 2 tethered cord surgeries as a child, then 26 years later the cord

attached again,, when the did my surgery last year, I was told there was alot of

scar tissue and that it was mostly attached to that.. They cut some of the scar

tissue to make sure it wouldnt do it again,, I have had a rough year recovering

from this 3rd surgery and I have some nerve damage and take lyrica for it and it

does help.

Hope my story helps

e

> > >

> > > >

> > > >

> > > > I saw the adult neuro today, he took the time to explain the MRI to me

and

> > > > my husband. He didn't see anything wrong with the structure of my spine

and

> > > > believes I have a tethered cord right above where my scar is. He wants

me to

> > > > go for a " bending " x-ray and CAT scan to rule out anything else that

could

> > > > be compressing my cord. He will also speak with the pediatric neuro to

> > > > discuss his findings. He said I don't have the " classic " tsc symptoms,

but

> > > > it is very evident from the muscle wasting in my calf and my ankle

weakness

> > > > that something is definately compressing my cord and if it's not in the

> > > > structure then it has to be tethered.

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

I've set a new date for surgery- 4/19. Pediatric neuro is doing the surgery at

NYU. It's going to be a crazy week, feels like I was just here a few weeks ago

:-).

>

[Guest guest]

Excellent! Be sure to update asap! Randee

In a message dated 4/9/2011 8:18:23 A.M. Central Daylight Time,

sueradz@... writes:

I've set a new date for surgery- 4/19. Pediatric neuro is doing the

surgery at NYU. It's going to be a crazy week, feels like I was just here a few

weeks ago :-).

>