Re: Had Hailey's appt today with NS

[Guest guest]

Did the NS say anything about her nerve function between L2-L5.

Sent from my iPhone

He said that she does have a fatty filum and with all of her symptoms

it's reasonable to go in and cut it. He's not 100% sure it will work

but is leaving the decision up to us. I'm not sure what to do.

[Guest guest]

No, he said that she had a normal MRI but had a fatty filum (small focus of

fat).

Tammy mom to Hailey

Congenital scoliosis, fused ribs, liver cyst, minor heart defect and very tiny

little girl.

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Monday, December 22, 2008 5:28:00 PM

Subject: Re: Had Hailey's appt today with NS

Did the NS say anything about her nerve function between L2-L5.

Sent from my iPhone

On Dec 22, 2008, at 5:30 PM, " ttoy25 " <ttoy25yahoo (DOT) com> wrote:

He said that she does have a fatty filum and with all of her symptoms

it's reasonable to go in and cut it. He's not 100% sure it will work

but is leaving the decision up to us. I'm not sure what to do.

[Guest guest]

There was no nerve damage whatso ever

Sent from my iPhone

No, he said that she had a normal MRI but had a fatty filum (small focus of

fat).

Tammy mom to Hailey

Congenital scoliosis, fused ribs, liver cyst, minor heart defect and very tiny

little girl.

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Monday, December 22, 2008 5:28:00 PM

Subject: Re: Had Hailey's appt today with NS

Did the NS say anything about her nerve function between L2-L5.

Sent from my iPhone

On Dec 22, 2008, at 5:30 PM, " ttoy25 " <ttoy25yahoo (DOT) com> wrote:

He said that she does have a fatty filum and with all of her symptoms

it's reasonable to go in and cut it. He's not 100% sure it will work

but is leaving the decision up to us. I'm not sure what to do.

[Guest guest]

He said there could be nerve involvement which is why the surgery is

an option. He said it might be the problem and fix things or it won't

help at all. With everything that she's presenting with he thinks its

worth a shot.

>

> He said that she does have a fatty filum and with all of her symptoms

> it's reasonable to go in and cut it. He's not 100% sure it will work

> but is leaving the decision up to us. I'm not sure what to do.

>

>

[Guest guest]

Faith had the same issues with the nerve

Damage and the surgery is a 50/50 shot

Sent from my iPhone

He said there could be nerve involvement which is why the surgery is

an option. He said it might be the problem and fix things or it won't

help at all. With everything that she's presenting with he thinks its

worth a shot.

>

> He said that she does have a fatty filum and with all of her symptoms

> it's reasonable to go in and cut it. He's not 100% sure it will work

> but is leaving the decision up to us. I'm not sure what to do.

>

>

[Guest guest]

I was told the same thing for Emma. 50/50 chance of it working. We

did the surgery b/c in our circumstance we had nothing to lose (Emma's

kidneys were getting damaged b/c of her neurogenic bladder). I'm so

glad we did!! The surgery worked 110% for her! Not only did all her

symptoms get better, she actually IMPROVED bladder function and her

kidneys are almost totally normal now.

I say do it again in a second.

>

> He said that she does have a fatty filum and with all of her symptoms

> it's reasonable to go in and cut it. He's not 100% sure it will work

> but is leaving the decision up to us. I'm not sure what to do.

>

[Guest guest]

In a message dated 12/22/2008 5:30:50 P.M. Eastern Standard Time,

ttoy25@... writes:

He said that she does have a fatty filum and with all of her symptoms

it's reasonable to go in and cut it. He's not 100% sure it will work

but is leaving the decision up to us. I'm not sure what to do.

For a first tether, with her symptoms I think I would do the surgery.

Retethers are harder to decide when to go in, but with the first surgery you

have

a good chance to help things without complications. I can't remember her

symptoms offhand (too many people to remember without symptom list in signature

line), but wasn't she having issues with her bladder and kidneys that could

lead to permanent damage?

Connie

Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

Anorectal malformations support - The Pull-Thru Network

_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php)

S. Jersey

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