Anyone doing the wait and see approach?

[Guest guest]

Hi everyone,

I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

Blessings,

Kyra

[Guest guest]

I did a wait and see approach in the sense that I did not get diagnosed until I

was an adult (had surgery two years ago). But, did not have any issues until I

was 18 years old (mainly back and leg pain) and still have never had any

bladder/bowel issues. I had a tight/fatty filum. The surgery has relieved me

of a lot of leg pain (mainly aching sensation), but I would think my nerve

damage done to my left leg is likely permanent due to not getting the surgery

done sooner. I think a wait and see approach is reasonable if there are no

signs of neurological damage -- the minute there are, I would have her

re-evaluated. But every situation is different so I would recommend you go

ahead and get additional opinions from different NSG's who can help you weigh

the risks versus benefits of doing or not doing the surgery right now.

Dee

To: tetheredspinalcord

From: kyra_baker@...

Date: Tue, 1 Jun 2010 18:09:59 +0000

Subject: Anyone doing the " wait and see " approach?

Hi everyone,

I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

Blessings,

Kyra

_________________________________________________________________

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[Guest guest]

Even with doing the surgery- we all play the wait n see method because retethers

are possible. Therefore, I wouldn't subject her to surgery if there are no

signs.

Sent from my Verizon Wireless BlackBerry

Anyone doing the " wait and see " approach?

Hi everyone,

I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

Blessings,

Kyra

[Guest guest]

*Hi Kyra,*

**

*I do live in Charlotte NC. My son was diagnosed with tethered cord and a

lipoma at age 5. He had irreversible nerve damage, that had caused him to be

unable to become potty trained. He is now 9 and still wearing pull ups.

He is undergoing a bladder augmentation, MACE and mitrofanoff June 25th.*

**

*If I knew he had a TC at age 2, I would have gotten the surgery as soon as

possible. TC only gets worse as the child gets taller. *

**

*The neurosurgeon that did my sons de-tethering is name Dr. Henegar

at Carolina Neurosurgery and spine. He tends to be a bit on the

conservative/cautious side, and that is one reason I love him. he has a

great bedside manner and I am very confident in allowing him to treat , and

operate on my son.*

**

*If you ever want to meet or talk, please send me a private email.*

**

*

*

>

>

> Hi everyone,

>

> I am the mommy of a precious 2 1/2 year old adopted from China. She was

> diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor

> her growth and development and remain conservative. She has completed the

> full urological tests and they are normal. She is potty trained. I am trying

> to be patient with the " wait and see " approach but frankly, it can be scary.

> I would never want her to begin symptoms that were irreversible before doing

> something. On the contrary, I don't want to subject her to a surgery that

> might cause problems that were not there before. I would like several

> opinions from NSG in the Charlotte, NC area if anyone could recommend names

> to me.

>

> Blessings,

>

> Kyra

>

>

>

[Guest guest]

Hi Kyra,

I would defnitely recommend you to go for 2-3 opinions. Make sure that her

Urological tests are normal, she don't have any pains., Get her checked from

ortho also for any scoliosis sign.

My daugther had lump on her back and was diagnosed with TC when she was born,

her first surgery was done when she was 5 months old but then evertyhign went

well till 6 but at 7 she started complaining about back pain a lot. So she was

recommended another surgery by the same NSG. We went for it but after surgery

she has bladder and constipation issues which GOD now knows will take time or is

it that some nerve is damaged.

We are going to see NSG and hopefully will get some answers from him as its

gonna be a year after the surgery.

Basically you have to be careful when growth spurt comes say at least get her

urodynamics done after a year .

Thanks

Jas

>

> >

> >

> > Hi everyone,

> >

> > I am the mommy of a precious 2 1/2 year old adopted

> from China. She was

> > diagnosed with TC on an MRI. She is asymptomatic and

> NSG wants to monitor

> > her growth and development and remain conservative.

> She has completed the

> > full urological tests and they are normal. She is

> potty trained. I am trying

> > to be patient with the " wait and see " approach but

> frankly, it can be scary.

> > I would never want her to begin symptoms that were

> irreversible before doing

> > something. On the contrary, I don't want to subject

> her to a surgery that

> > might cause problems that were not there before. I

> would like several

> > opinions from NSG in the Charlotte, NC area if anyone

> could recommend names

> > to me.

> >

> > Blessings,

> >

> > Kyra

> >

> >

> >

>

>

>

[Guest guest]

I'm 55 with very little symptoms went thru my whole life not knowing that I had

TSC until recently found the TSC by accident thru MRI...

 

________________________________

To: tetheredspinalcord

Sent: Tue, June 1, 2010 2:09:59 PM

Subject: Anyone doing the " wait and see " approach?

 

Hi everyone,

I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

Blessings,

Kyra

[Guest guest]

Hi everyone. I'm new to this group and have joined because I am considering

possible surgery for TSC. I'm a 46 year old female adult. I found out I had TSC

five years ago from an MRI I had due to symptoms of TSC.

I was born with TSC but never knew I had it, and have always experienced

" painful electric twinges " in a lump on my lower back right above my tailbone.

For some reason, I get them every time I run a fever when I'm sick.

I've lived an otherwise normal life - I have four children and used to be a

gymnast. For the most part, the TSC did not bother me enough to keep me from

these activities. However, the worst part is having to tolerate those " twinges "

and having grown up with constipation issues which resulted in needing rectal

surgery.

I am so scared of getting older and having to deal with those " twinges " , being

too old for surgery, symptoms getting worse, etc.

I am hoping to find anyone out there with similar symptoms to mine or that has

gone through surgery as an adult. My NSG wants to " snip " my spinal cord. The

thought terrifies me, but he assured me that he knows the top 3 pediatric

neurosurgeons in the States. One of them lives here in San and works

with the Univ of Texas Health Science Center (Dr. Jimenez). He said he could

refer me to him since he has more surgeries on record than himself.

After 46 years of tolerating TSC, I finally have hope that something can be done

about those twinges. But on the other hand, I feel like I don't know enough

about it. Any help or advice is appreciated. I apologize for having to catch

up to everyone else as far as information.

Thanks so much.

>

> I'm 55 with very little symptoms went thru my whole life not knowing that I

had TSC until recently found the TSC by accident thru MRI...

>

>

>

>  

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Tue, June 1, 2010 2:09:59 PM

> Subject: Anyone doing the " wait and see " approach?

>

>  

> Hi everyone,

>

> I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

>

> Blessings,

>

> Kyra

>

>

>

>

>

>

>

>