new here.4.5 yr old dtr dx'ed

[Guest guest]

we just got the mri report showing my 4.5 yr old dtr has a mild

degree of tethering of her spinal cord at the lower l3 level. she

also has split cord malformation(diplomyelia) from level t11 through

the conus termination at the l3 level,with a duplication od the

filum terminale.the dx also stated meningocele. we are now on to see

a ped neuro-surgeon to get answers.we saw an ped ortho for an

abnormal gait issue with a misplaced raised vertabrae and she was a

very late walker(20 months) that 2 ped groups felt neither were any

problem.

his finding that lead to the mri were.lack of left ankle

reflex,very abnormal running gait,dragging of the left foot(which is

getting worse),smaller left thigh,abscense of the spinous process in

the entire lumbar region via xray.she has very minimul curvatures of

the spine. the mri came back with scoliosis in every level of her

spine,even in the cervical area.

ive read where the cord needs to be untethered soon. im looking for

any and all info regarding everything but the scoliosis aspect of

the findings. i am very concerned with the split cord things,but

am not finding out much on the web.

we see the neuro jan 6th unless something opens up this week.hes on

vacation starting next week until jan.

Also on detethering,what is the recovery like...timeframe averages

etc? we currently are in Wa state and were to go back to SC mid

jan,but depending on what is said about emily that can change. if

its a long rehab time,can it be put off for up to a month so we can

get back down there and set to go.?

thanks for any help! now off to read achives!

emily 4.5 dx meningocele with tcs and diplomyelia

catie 2.5 no problems

andrew 1.5 no problems

[Guest guest]

Welcome to the group. What part of washington are you in? I'm in OR with

three that are awaiting thier first appt with the nsg to decide on surg etc.

I'm pretty sure that my two oldest are going to need surgery the jury is

still out on my youngest. I know that the younger the child id for the

dethering the faster the recovery. My husband works with someone who's

children were detethered. he said the first one was ready to play two days

later but that his youngest took almost a week but that after that he only

had pain when it was time for him to do his chores;) I wish you and your

family well this holiday season.

Charnel

PS We have a Pacific NW support group if you want to check us out we are a

realitivly new group.

http://health.groups.yahoo.com/group/Chiari-Pacific-Northwest-USA/

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: new here.4.5 yr old dtr dx'ed

>Date: Mon, 15 Dec 2003 21:13:58 -0000

>

>we just got the mri report showing my 4.5 yr old dtr has a mild

>degree of tethering of her spinal cord at the lower l3 level. she

>also has split cord malformation(diplomyelia) from level t11 through

>the conus termination at the l3 level,with a duplication od the

>filum terminale.the dx also stated meningocele. we are now on to see

>a ped neuro-surgeon to get answers.we saw an ped ortho for an

>abnormal gait issue with a misplaced raised vertabrae and she was a

>very late walker(20 months) that 2 ped groups felt neither were any

>problem.

> his finding that lead to the mri were.lack of left ankle

>reflex,very abnormal running gait,dragging of the left foot(which is

>getting worse),smaller left thigh,abscense of the spinous process in

>the entire lumbar region via xray.she has very minimul curvatures of

>the spine. the mri came back with scoliosis in every level of her

>spine,even in the cervical area.

>

>ive read where the cord needs to be untethered soon. im looking for

>any and all info regarding everything but the scoliosis aspect of

>the findings. i am very concerned with the split cord things,but

>am not finding out much on the web.

> we see the neuro jan 6th unless something opens up this week.hes on

>vacation starting next week until jan.

> Also on detethering,what is the recovery like...timeframe averages

>etc? we currently are in Wa state and were to go back to SC mid

>jan,but depending on what is said about emily that can change. if

>its a long rehab time,can it be put off for up to a month so we can

>get back down there and set to go.?

>

>thanks for any help! now off to read achives!

>

> emily 4.5 dx meningocele with tcs and diplomyelia

> catie 2.5 no problems

> andrew 1.5 no problems

>

_________________________________________________________________

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[Guest guest]

Thanks, right now were in Spokane Wa. We actually reside in

greenville south carolina. i seperated from my husband back in

august and came home to my family to get away from him! he since has

come to his senses. We are supposed to go back in january,but

depending on emily who knows. we are thinking now to just find a ped

ns and a ped ortho and do everything down there. i dont know how

great it would be to have surgery here and say a month later go back

and have her sitting in her booster seat in the van for 5 very long

days of driving. then have to see new drs about all of it. i dont

know decisions decisions!

thanks for everything and i signed up for your other board

> Welcome to the group. What part of washington are you in? I'm in

OR with

> three that are awaiting thier first appt with the nsg to decide on

surg etc.

> I'm pretty sure that my two oldest are going to need surgery the

jury is

> still out on my youngest. I know that the younger the child id

for the

> dethering the faster the recovery. My husband works with someone

who's

> children were detethered. he said the first one was ready to play

two days

> later but that his youngest took almost a week but that after that

he only

> had pain when it was time for him to do his chores;) I wish you

and your

> family well this holiday season.

> Charnel

> PS We have a Pacific NW support group if you want to check us out

we are a

> realitivly new group.

> http://health.groups.yahoo.com/group/Chiari-Pacific-Northwest-USA/

>

>

> >From: " " <mommatoemily@a...>

> >Reply-To: tetheredspinalcord

> >To: tetheredspinalcord

> >Subject: new here.4.5 yr old dtr dx'ed

> >Date: Mon, 15 Dec 2003 21:13:58 -0000

> >

> >we just got the mri report showing my 4.5 yr old dtr has a mild

> >degree of tethering of her spinal cord at the lower l3 level. she

> >also has split cord malformation(diplomyelia) from level t11

through

> >the conus termination at the l3 level,with a duplication od the

> >filum terminale.the dx also stated meningocele. we are now on to

see

> >a ped neuro-surgeon to get answers.we saw an ped ortho for an

> >abnormal gait issue with a misplaced raised vertabrae and she was

a

> >very late walker(20 months) that 2 ped groups felt neither were

any

> >problem.

> > his finding that lead to the mri were.lack of left ankle

> >reflex,very abnormal running gait,dragging of the left foot(which

is

> >getting worse),smaller left thigh,abscense of the spinous process

in

> >the entire lumbar region via xray.she has very minimul curvatures

of

> >the spine. the mri came back with scoliosis in every level of her

> >spine,even in the cervical area.

> >

> >ive read where the cord needs to be untethered soon. im looking

for

> >any and all info regarding everything but the scoliosis aspect of

> >the findings. i am very concerned with the split cord things,but

> >am not finding out much on the web.

> > we see the neuro jan 6th unless something opens up this

week.hes on

> >vacation starting next week until jan.

> > Also on detethering,what is the recovery like...timeframe

averages

> >etc? we currently are in Wa state and were to go back to SC mid

> >jan,but depending on what is said about emily that can change. if

> >its a long rehab time,can it be put off for up to a month so we

can

> >get back down there and set to go.?

> >

> >thanks for any help! now off to read achives!

> >

> > emily 4.5 dx meningocele with tcs and diplomyelia

> > catie 2.5 no problems

> > andrew 1.5 no problems

> >

>

> _________________________________________________________________

> Our best dial-up offer is back. Get MSN Dial-up Internet Service

for 6

> months @ $9.95/month now! http://join.msn.com/?page=dept/dialup