Re: new to group and I have a retethering question for my dd

[Guest guest]

My daughter is 20 yrs. She had A.C.M. surg. at 15 yrs. Why had this tethered

cord gone so long before any Drs. said anything about it? She has the best Drs.

anywhere around. She has had several MRIs , I just don't understand! She has

been living off pain meds. a long time.

________________________________

To: tetheredspinalcord

Sent: Sunday, December 28, 2008 10:46:11 PM

Subject: new to group and I have a retethering question for my dd

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

[Guest guest]

Ah Olivia, We all hate these stories. Time for another NSG's opinion. The

group may have suggestions if you are willing to share where you live. Much

good luck. randee

In a message dated 12/28/2008 10:46:36 P.M. Eastern Standard Time,

oliviastellamarie@... writes:

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

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[Guest guest]

, When my daughter who is now 18, was born we were told that if she

became potty trained we were home free. Things change quickly in terms of what

MDs know, advise etc. The idea that surgery is preventive is relatively new.

With our kids, it was don't mess with surgery unless you have too. Sigh.

And who knows what would have been best anyway since they so often need more

surgeries due to scar tissue (as in the case of my girl so....?) Randee

In a message dated 12/28/2008 11:03:14 P.M. Eastern Standard Time,

lisakay.summers@... writes:

My daughter is 20 yrs. She had A.C.M. surg. at 15 yrs. Why had this tethered

cord gone so long before any Drs. said anything about it? She has the best

Drs. anywhere around. She has had several MRIs , I just don't understand! She

has been living off pain meds. a long time.

________________________________

From: oliviastellamarie <_oliviastellamarie@oliviaste_

(mailto:oliviastellamarie@...) >

To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

Sent: Sunday, December 28, 2008 10:46:11 PM

Subject: new to group and I have a retethering question for my dd

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

[Non-text portions of this message have been removed]

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[Guest guest]

I will apologize in advance for this.....OMFG!!!!!!! If I could tell you how

much suffering I endured as a child and was always told " its only growing

pains "  only to find out at age 36 that I was tethered at birth. Increased pain,

especially debilitating pain is a sign of retether. Listen to your daughter and

find a doc who will too.

Subject: new to group and I have a retethering question for my dd

To: tetheredspinalcord

Date: Monday, December 29, 2008, 3:46 AM

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

[Guest guest]

, I am so sorry about your daughters pain. We learn not to complain, its a

waste of energy. As for docs, no one understands them. Remember, the " best docs

in the world " can be wrong too...besides, they may be the best for some things

and not for TC at all.

Subject: Re: new to group and I have a retethering question for my dd

To: tetheredspinalcord

Date: Monday, December 29, 2008, 4:02 AM

My daughter is 20 yrs. She had A.C.M. surg. at 15 yrs. Why had this tethered

cord gone so long before any Drs. said anything about it? She has the best Drs.

anywhere around. She has had several MRIs , I just don't understand! She has

been living off pain meds. a long time.

____________ _________ _________ __

From: oliviastellamarie <oliviastellamarie@ yahoo.com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Sunday, December 28, 2008 10:46:11 PM

Subject: new to group and I have a retethering question for my dd

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

[Guest guest]

Hello,

 My name is Corinn and I have a 3yr old with the same thing. She was detethered

in Feb 08 and was 2 1/2  at the time. It took that long to diagnose!! She did

lose her nerves in the intestine as a result of the long  wait for diagnosis but

now she too is having wet accidents! as well as leg pain to the point that she

has decreased energy and play at preschool. We are going back to the NS to see

if this is re tethering or nerve loss as a result of the tethering. I don't want

to scare you but a mother ALWAYS knows I would keep on the docs about taking

another MRI. to be sure. They (the doctors)may say no because they like to wait

six months to a year after surgery just because of scar tissue but if it has

been that long then PUSH for it. It may be that she is not re tethered because

it does take some time for it to refuse but if she is showing signs and symptoms

I would  because it may re-tether later. It is possible for that to happen as

the

child grows usually it doesn't reappear until teenage yrs but that is not

always the case. It's always better to be safe. The pain may also be coming

because now that full circulation is going to the legs her nerves are becoming

active and regenerating. I have done substantial research on this in children

and am willing to share what I know with you at ANY TIME. I know how frustrating

it can be trying to get them to listen to you but don't give up!! I am here for

you and truly understand what you are going through. Please contact me at any

time for support or questions. this can be very difficult to understand and cope

with. I am sincerely here and would love to talk!

Subject: new to group and I have a retethering question for my dd

To: tetheredspinalcord

Date: Sunday, December 28, 2008, 10:46 PM

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks

[Guest guest]

A Dr. once told me nobody knows a child like a parent. We still have this Dr. He

is great.

________________________________

To: tetheredspinalcord

Sent: Monday, December 29, 2008 10:21:47 AM

Subject: Re: new to group and I have a retethering question for my dd

I will apologize in advance for this.....OMFG! !!!!!! If I could tell you how

much suffering I endured as a child and was always told " its only growing

pains "  only to find out at age 36 that I was tethered at birth. Increased pain,

especially debilitating pain is a sign of retether. Listen to your daughter and

find a doc who will too.

From: oliviastellamarie <oliviastellamarie@ yahoo.com>

Subject: new to group and I have a retethering question for my dd

To: tetheredspinalcord@ yahoogroups. com

Date: Monday, December 29, 2008, 3:46 AM

Hi,

I am new to this group. I have a 4 year old that was diagnosed with

tether spinal cord at 9 months and had surgery two weeks later. It

took me 9 months to get a doctor to agree to do the MRI. She was born

with a deep dimple off center of her butt crack and we were told by

several doctors not to worry about it. Anyways, She has been doing

great until a few months ago were she started complaining of severe leg

pain. Pain that wakes her up at night and she can barely move during

the " pain episodes " . Now the doctors are telling us that it is

just " growing pains " . How do I know for sure? The doctors let us down

the first time.

What are the signs of retethering? She has had two wet accidents, but

she just turned 4.

Thanks