Re: Muscle imbalance - TC with some other unknown issue?(long)

September 22, 2006

What sounds so important, Abby, is that you don't feel 100% trusting of the

neurosurgeon...Is there another in your town or city so that you can get

another opinion?

Randee

September 22, 2006

I think it is so very odd that he would say that it could be due to another

brain problem...very very strange and inappropriate I would think since there

is no reason to believe that one exists. Did you ask him about scarring as a

possiblity though even so, one would just ignore it I am sure if this is the

only minor issue that she has...I am sure you know that doing the surgery

was so clearly the right thing. The evidence is so strong that those who get

detethered are significantly less likely to develop problems down the

road...with a first and simple detether, as in your case, I am sure every single

physician who is up on the research would say to do it..so whatever is or isn't

going on, you know you made the right decision at the time for sure.

randee

September 22, 2006

Hey Abby...the odds seem very high indeed that this is nothing at all but

some normal variation...I do think it is wrong of your neurosurgeon to say it

cannot retether since it can due to the formation of scar tissue. It is not

by any means the usual outcome so I don't want you to be scared..but at the

same time, it seems inappropriate for him to ignore this as a (perhaps far

fetched) but nevertheless a possibility...I would like to know his response to

this question?

Randee

September 22, 2006

Actually I like our nsg, I think he is very good. I was just really

surprised that he categorically said that this is not due to tethered

cord, it could be some other brain related problem (if it turned out

to be progressive). I was under the impression that if it wasnt

progressive it was damage caused before the detethering surgery, and

if it was, it could mean re-tethering. I hadnt even thought about some

other brain related problem. Sounds very scary to me.

Abby.

>

> What sounds so important, Abby, is that you don't feel 100% trusting

of the

> neurosurgeon...Is there another in your town or city so that you can

get

> another opinion?

> Randee

>

September 22, 2006

Well, I don't understand it all but hurrah if he is confident that there is

no way that it could retether from scar tissue which suggests you should try

your best to put it away and enjoy your girl!! As if there is a parent among

us who doesn't worry...and worry ... and worry...

Randee

September 22, 2006

Most people are asymmetrical. The dominant side is

stronger. I think I even read somewhere that the

dominant hand is bigger. The problem comes with how

big is the difference and does it cause any problems.

Brain problem seems terribly extreme to me. I'm not a

doctor, but if a doctor said that to me, I'd be really

shocked too, and asking him what " brain problems "

cause that kind of difference. I know there are cases

of cerebral palsy that are so mild that all that is

noticeable is muscle weakness, but I don't know that

it would be unilateral. My nephew has CP, his is

severe, but both sides of his body are affected and I

don't know that I've known anyone with so mild a case

that one side was affected but not the other.

Did he refer you to a specific kind of doctor? Mention

a neurologist at all?

--- subub_98 wrote:

> I have mentioned this before...my now 10 month

> daughter was considered

> asymptomatic, and her TC case was considered the

> most minor of all TC

> cases uniformly by all nsgs we saw. Everyone said,

> do it (surgery) and

> forget about it.

>

> So, we did it, and everything is fine...she is

> developing well,

> meeting milestones etc. But about 3 months ago, I

> noticed that her

> left calf looked just a teeny bit smaller than the

> right, and raised a

> ruckus about it. No one paid much attention...

>

> Constant re-measurement of the calves showed that

> the size was nearly

> the same, it was more of the tone. The left was

> slightly softer.

>

> Anyway, we had our 3.5 month post-op routine visit

> with the nsg

> yesterday, and he did acknowledge that there was a

> difference, not

> only in the calf, but also the resistance of the

> ankle. The left ankle

> is somewhat floppier than the other (puts up less

> resistance when

> pushed up - no drop foot or anything), but within

> the normal range for

> age. So, basically, yes there is a difference.

>

> But the nsg says that it cannot be caused by

> tethered cord. If it

> were, it would show is bladder and bowel etc and not

> here. Also her

> sensation and reflux is intact, so not tethered

> cord. He claims it is

> impossible for the cord to have re-tethered (in her

> particular case)

> and so unless this was something that was existing

> before the surgery,

> it is not tethered cord related. But we didnt notice

> this before the

> surgery..so he says, either we didnt notice earlier

> (but they looked

> at the symmetry etc at that point, but I wouldnt put

> it past the

> doctors to not notice subtle differences), or if it

> is progressing,

> then there is something else going on in the brain -

> some other brain

> related stuff that is causing this - definitely not

> tethered cord.

>

> In the past 3 months that I am monitoring, the

> muscle tone does not

> seem to be progressing. The nsg says the window is 6

> months to a year.

> I just found out about the ankle , so have no clue

> what its original

> state was. Also, when she is asleep, the ankles both

> have equal

> resistance (or floppiness). Only when she is awake

> the resistance is

> different.

>

> Earlier they had done just the full spine MRI and

> not the brain MRI.

> The nsg's statements have me worried. What other

> brain issues can

> cause this, especially since it seems so related to

> the tethered cord?

> Can chiari cause this?

>

> Or on the other hand, is it normal for " normal "

> babies this age to

> develop subtle preferences of side, thereby causing

> small differences

> like this?

>

> Abby.

>

__________________________________________________

September 22, 2006

That's exactly why I was shocked - I thought it was extreme and

unwarranted. I have seen so many kids on these groups who have much

more severe neurological problems, and no one is thinking about other

unrelated brain issues as far as I know. The only related brain issues

that I know of are hydrocephalus and chiari malformation. I dont know

if either of these can cause issues like this. There is no evidence of

either of these being present.

I too thought about cerebral palsy, but here she is - a beautiful,

active, healthy girl, meeting her milestones early, with a mild case

of tethered cord, and he suggests something else. My husband's take on

it is that he is the doctor who has gone in to do the surgery, has

looked at the cord and lipoma, and he knows whether it can re-tether

or not. And the nsg is so confident that it cannot retether

( " impossible " is what the nsg said) that to him the only reason for a

progressive problem is that it comes from somewhere else and not the

tethered cord. My husband didnt seem to mind it much. In fact he was

happy that the nsg is so confident about the improbability of

re-tethering.

No, he didnt refer us anywhere, except routine followups with urology.

Not to PT or orthopedics or neurologist. He said we would observe it

for 6 months, and if it got any worse, then he would order a complete

MRI of the brain and spine along with some other tests.

- Abby.

>

> > I have mentioned this before...my now 10 month

> > daughter was considered

> > asymptomatic, and her TC case was considered the

> > most minor of all TC

> > cases uniformly by all nsgs we saw. Everyone said,

> > do it (surgery) and

> > forget about it.

> >

> > So, we did it, and everything is fine...she is

> > developing well,

> > meeting milestones etc. But about 3 months ago, I

> > noticed that her

> > left calf looked just a teeny bit smaller than the

> > right, and raised a

> > ruckus about it. No one paid much attention...

> >

> > Constant re-measurement of the calves showed that

> > the size was nearly

> > the same, it was more of the tone. The left was

> > slightly softer.

> >

> > Anyway, we had our 3.5 month post-op routine visit

> > with the nsg

> > yesterday, and he did acknowledge that there was a

> > difference, not

> > only in the calf, but also the resistance of the

> > ankle. The left ankle

> > is somewhat floppier than the other (puts up less

> > resistance when

> > pushed up - no drop foot or anything), but within

> > the normal range for

> > age. So, basically, yes there is a difference.

> >

> > But the nsg says that it cannot be caused by

> > tethered cord. If it

> > were, it would show is bladder and bowel etc and not

> > here. Also her

> > sensation and reflux is intact, so not tethered

> > cord. He claims it is

> > impossible for the cord to have re-tethered (in her

> > particular case)

> > and so unless this was something that was existing

> > before the surgery,

> > it is not tethered cord related. But we didnt notice

> > this before the

> > surgery..so he says, either we didnt notice earlier

> > (but they looked

> > at the symmetry etc at that point, but I wouldnt put

> > it past the

> > doctors to not notice subtle differences), or if it

> > is progressing,

> > then there is something else going on in the brain -

> > some other brain

> > related stuff that is causing this - definitely not

> > tethered cord.

> >

> > In the past 3 months that I am monitoring, the

> > muscle tone does not

> > seem to be progressing. The nsg says the window is 6

> > months to a year.

> > I just found out about the ankle , so have no clue

> > what its original

> > state was. Also, when she is asleep, the ankles both

> > have equal

> > resistance (or floppiness). Only when she is awake

> > the resistance is

> > different.

> >

> > Earlier they had done just the full spine MRI and

> > not the brain MRI.

> > The nsg's statements have me worried. What other

> > brain issues can

> > cause this, especially since it seems so related to

> > the tethered cord?

> > Can chiari cause this?

> >

> > Or on the other hand, is it normal for " normal "

> > babies this age to

> > develop subtle preferences of side, thereby causing

> > small differences

> > like this?

> >

> > Abby.

> >

>

> __________________________________________________

>

September 22, 2006

My daughter ( who is 7 1/2 months old) has a TC and Lipomyelomeningocele.

Has that been ruled out? My daughters left leg is shorter and smaller in

circumference than the right. It is also floppy and loose. Thats how we

first noticed something was wrong when she was 2 months old.

Anne

Mama to le and Conner

----Original Message Follows----

Reply-To: tetheredspinalcord

To: tetheredspinalcord

Subject: Re: Muscle imbalance - TC with some other unknown

issue?(long)

Date: Fri, 22 Sep 2006 21:09:32 -0000

That's exactly why I was shocked - I thought it was extreme and

unwarranted. I have seen so many kids on these groups who have much

more severe neurological problems, and no one is thinking about other

unrelated brain issues as far as I know. The only related brain issues

that I know of are hydrocephalus and chiari malformation. I dont know

if either of these can cause issues like this. There is no evidence of

either of these being present.

I too thought about cerebral palsy, but here she is - a beautiful,

active, healthy girl, meeting her milestones early, with a mild case

of tethered cord, and he suggests something else. My husband's take on

it is that he is the doctor who has gone in to do the surgery, has

looked at the cord and lipoma, and he knows whether it can re-tether

or not. And the nsg is so confident that it cannot retether

( " impossible " is what the nsg said) that to him the only reason for a

progressive problem is that it comes from somewhere else and not the

tethered cord. My husband didnt seem to mind it much. In fact he was

happy that the nsg is so confident about the improbability of

re-tethering.

No, he didnt refer us anywhere, except routine followups with urology.

Not to PT or orthopedics or neurologist. He said we would observe it

for 6 months, and if it got any worse, then he would order a complete

MRI of the brain and spine along with some other tests.

- Abby.

>

> > I have mentioned this before...my now 10 month

> > daughter was considered

> > asymptomatic, and her TC case was considered the

> > most minor of all TC

> > cases uniformly by all nsgs we saw. Everyone said,

> > do it (surgery) and

> > forget about it.

> >

> > So, we did it, and everything is fine...she is

> > developing well,

> > meeting milestones etc. But about 3 months ago, I

> > noticed that her

> > left calf looked just a teeny bit smaller than the

> > right, and raised a

> > ruckus about it. No one paid much attention...

> >

> > Constant re-measurement of the calves showed that

> > the size was nearly

> > the same, it was more of the tone. The left was

> > slightly softer.

> >

> > Anyway, we had our 3.5 month post-op routine visit

> > with the nsg

> > yesterday, and he did acknowledge that there was a

> > difference, not

> > only in the calf, but also the resistance of the

> > ankle. The left ankle

> > is somewhat floppier than the other (puts up less

> > resistance when

> > pushed up - no drop foot or anything), but within

> > the normal range for

> > age. So, basically, yes there is a difference.

> >

> > But the nsg says that it cannot be caused by

> > tethered cord. If it

> > were, it would show is bladder and bowel etc and not

> > here. Also her

> > sensation and reflux is intact, so not tethered

> > cord. He claims it is

> > impossible for the cord to have re-tethered (in her

> > particular case)

> > and so unless this was something that was existing

> > before the surgery,

> > it is not tethered cord related. But we didnt notice

> > this before the

> > surgery..so he says, either we didnt notice earlier

> > (but they looked

> > at the symmetry etc at that point, but I wouldnt put

> > it past the

> > doctors to not notice subtle differences), or if it

> > is progressing,

> > then there is something else going on in the brain -

> > some other brain

> > related stuff that is causing this - definitely not

> > tethered cord.

> >

> > In the past 3 months that I am monitoring, the

> > muscle tone does not

> > seem to be progressing. The nsg says the window is 6

> > months to a year.

> > I just found out about the ankle , so have no clue

> > what its original

> > state was. Also, when she is asleep, the ankles both

> > have equal

> > resistance (or floppiness). Only when she is awake

> > the resistance is

> > different.

> >

> > Earlier they had done just the full spine MRI and

> > not the brain MRI.

> > The nsg's statements have me worried. What other

> > brain issues can

> > cause this, especially since it seems so related to

> > the tethered cord?

> > Can chiari cause this?

> >

> > Or on the other hand, is it normal for " normal "

> > babies this age to

> > develop subtle preferences of side, thereby causing

> > small differences

> > like this?

> >

> > Abby.

> >

>

> __________________________________________________

>

September 23, 2006

Anne,

My daughter has/had TC. She had a lipoma that tethered the cord. It is

not LMC in that the lipoma is contained within the dura and there is

no defect in dura or spinal bones itself. So, yes she had TC and was

un-tethered. That is why I think this was/is due to TC and not some

other unknown problem. We didnt notice the floppiness earlier, so we

are not sure whether this is something that existed or is new. If it

existed before surgery, its OK . If not, we need to know what is

causing this. I think either way it is tethered cord, but the nsg

raised the suspicion of something else being wrong since he is very

sure that it CANNOT re-tether.

How did you notice your daughter's floppiness? Is the leg smaller just

to see, can a lay person notice it? Is it significant? Is she meeting

her milestones?

My daughter's calves measure almost exactly the same with a tape,

however, if you look carefully you can see one is a bit smaller than

the other in certain angles..and the ankle a little floppier to feel.

But reflexes and sensation is fine. It is so subtle that I wonder if

we just didnt notice it earlier, especially since her calves were so

small anyway.

Has your daughter's differences in leg stopped increasing once you

have had the surgery? Are her legs catching up? What are you doing for

them (pt?). We have been asked to just observe and not do anything for

now.

Thanks for commenting.

Abby.

> >

> > > I have mentioned this before...my now 10 month

> > > daughter was considered

> > > asymptomatic, and her TC case was considered the

> > > most minor of all TC

> > > cases uniformly by all nsgs we saw. Everyone said,

> > > do it (surgery) and

> > > forget about it.

> > >

> > > So, we did it, and everything is fine...she is

> > > developing well,

> > > meeting milestones etc. But about 3 months ago, I

> > > noticed that her

> > > left calf looked just a teeny bit smaller than the

> > > right, and raised a

> > > ruckus about it. No one paid much attention...

> > >

> > > Constant re-measurement of the calves showed that

> > > the size was nearly

> > > the same, it was more of the tone. The left was

> > > slightly softer.

> > >

> > > Anyway, we had our 3.5 month post-op routine visit

> > > with the nsg

> > > yesterday, and he did acknowledge that there was a

> > > difference, not

> > > only in the calf, but also the resistance of the

> > > ankle. The left ankle

> > > is somewhat floppier than the other (puts up less

> > > resistance when

> > > pushed up - no drop foot or anything), but within

> > > the normal range for

> > > age. So, basically, yes there is a difference.

> > >

> > > But the nsg says that it cannot be caused by

> > > tethered cord. If it

> > > were, it would show is bladder and bowel etc and not

> > > here. Also her

> > > sensation and reflux is intact, so not tethered

> > > cord. He claims it is

> > > impossible for the cord to have re-tethered (in her

> > > particular case)

> > > and so unless this was something that was existing

> > > before the surgery,

> > > it is not tethered cord related. But we didnt notice

> > > this before the

> > > surgery..so he says, either we didnt notice earlier

> > > (but they looked

> > > at the symmetry etc at that point, but I wouldnt put

> > > it past the

> > > doctors to not notice subtle differences), or if it

> > > is progressing,

> > > then there is something else going on in the brain -

> > > some other brain

> > > related stuff that is causing this - definitely not

> > > tethered cord.

> > >

> > > In the past 3 months that I am monitoring, the

> > > muscle tone does not

> > > seem to be progressing. The nsg says the window is 6

> > > months to a year.

> > > I just found out about the ankle , so have no clue

> > > what its original

> > > state was. Also, when she is asleep, the ankles both

> > > have equal

> > > resistance (or floppiness). Only when she is awake

> > > the resistance is

> > > different.

> > >

> > > Earlier they had done just the full spine MRI and

> > > not the brain MRI.

> > > The nsg's statements have me worried. What other

> > > brain issues can

> > > cause this, especially since it seems so related to

> > > the tethered cord?

> > > Can chiari cause this?

> > >

> > > Or on the other hand, is it normal for " normal "

> > > babies this age to

> > > develop subtle preferences of side, thereby causing

> > > small differences

> > > like this?

> > >

> > > Abby.

> > >

> >

> > __________________________________________________

> >

September 23, 2006

Thanks Randee. I did ask him, and his argument is based on her case,

and the way her performed the operation, the incision and spinal cord

are not next to each other (does that make sense?). He make the

incision lower than the cord, and cut out part of lipoma strand, and

he didnt even see the cord since it was high up. So, the lipoma and

strand cannot re-tether with the dura adjacent to them as that is

untouched. The place where the incision is, there is nothing adjacent

to that, as he clipped the filum as well. Atleast that is what I

understood from his explanantion.

He says that if it was a case of complex LMC, then it would be

possible that tc is the cause, and retethering happened.

I agree with you, if its not re-tethered (and I really hope its not),

then it is probably something that was either already there, or within

normal range for this age. I really dont think this is other brain

issue. But just wanted to ask the group if anyone else had faced any

situation when it turned out to be some other neurologicall issue

unconnected with tc, and if so what it could be.

Abby.

>

> Hey Abby...the odds seem very high indeed that this is nothing at

all but

> some normal variation...I do think it is wrong of your neurosurgeon

to say it

> cannot retether since it can due to the formation of scar tissue.

It is not

> by any means the usual outcome so I don't want you to be scared..but

at the

> same time, it seems inappropriate for him to ignore this as a

(perhaps far

> fetched) but nevertheless a possibility...I would like to know his

response to

> this question?

>

> Randee

>

September 23, 2006

I noticed when I was changing her diaper. I would pick her up by the

ankles to lift her bottom and slide the diaper underneath. I noticed the

left side didn't feel right, weak, floppy, loose. At first I brushed it

off as a newborn thing. But my gut said something is wrong (she is our

second child, so I am not a new Mom). I took her to two month check up and

AGAIN got on the Ped about her Hemangioma (its at the base of her spine) not

looking right (of course the Lipoma was underneath it). I was assured

(again and incorrectly) everything was fine.

Well two weeks later I finally commented to my husband on day as I was

changing her. He was the one that pointed out the lower leg was smaller

than the other. He was right. I hadn't caught that part.

So I took her back to the Ped who measured the leg...it was considerably

smaller in circumference than the other. Then we went to the Orthopedic

Surgeon, who referred us for an MRI and to a Neurologist, who after the MRI

referred us to a Neurosurgeon.

And here we are...

Anne

----Original Message Follows----

Reply-To: tetheredspinalcord

To: tetheredspinalcord

Subject: Re: Muscle imbalance - TC with some other unknown

issue?(long)

Date: Fri, 22 Sep 2006 22:11:47 -0000