Re: Intro and question- STUDY

[Guest guest]

Here are some studies. I made some of my decisions based on these:

http://www.ncbi.nlm.nih.gov/pubmed/19338463

http://www.conquerchiari.org/subs%20only/volume%204/issue%204(10)/minimal%20teth\

ered%20cord%204(10).asp

This link has 180 related studies (some full, some

not)http://www.ncbi.nlm.nih.gov/pubmed?term=tethered%20cord%20children%20study & i\

tool=QuerySuggestion

Subject: Re: Intro and question

To: tetheredspinalcord

Date: Monday, March 28, 2011, 2:32 PM

 

brings up a really good point. Many of us, as said

have had symptoms since they were young and thought that it was normal. (Me

included.)

Does anyone have a good and reputable site with a symptom list for children so

she can look it over with her son? He may not be willing to discuss sensitive

issues with you, but if he sees something on the list, he may be willing to

bring it up at some point, or at least tell the doctor. Which may give rise to

giving him some personal time with the nsg - you'd be amazed at what kids will

say or admit without a mom around (I have four grown children and learned the

hard say to never say never.)

Kathy

Intro and question

I have limited time so will simply post an intro and ask for replies,

please guide me if you need more info or there is anything I can clarify

and I will try.

I have a 15 year old son diagnosed with Scheuermann's kyphosis in

February based on an Xray. This spine specialist then tested his

reflexes. These were abnormally fast. We were referred for an MRI.

This doctor then called us and said my son has TCS and he referred us to

a pediatric neurosurgeon for an appointment this Wednesday. He said,

and my son's chiropractor confirmed his opinion, that my son would need

TCS release surgery, to prevent neurological problems.

However, my basic questions are these.

1) As far as we can tell my son has no other symptoms besides the fast

reflexes at this time. He doesn't have the dimple on the back, no

muscle weakness that we know of (unless in some way the deformity of the

vertebrae - Sh. Kyphosis is a symptom??), no bladder problems, etc.

2) He is 15, he is not a small child with symptoms, nor is he an adult

yet, so that is puzzling me as to whether or not he should have surgery.

My understanding from what I've read online is that children should

always have it, and that adults shouldn't unless they have severe enough

symptoms.

I am not one to rush into surgery. The risks concern me.

3) Do symptoms of TCS develop gradually or overnight? I'm thinking if

symptoms start developing as he continues to grow we would still have

time to do the surgery. I understand that once symptoms are severe that

the surgery is less likely to help.

4) What is the risk of retethering after one surgery has been done?

seems like it's relatively high due to the scar tissue. He doesn't have

any now, why add some?

5) Can anyone direct me to studies that address the question of if

surgery is *necessary* when there are no current symptoms?

So.... thank you for reading this email, and please respond if you have

any specific advice for me.

Thank you,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

Dybowski wrote:

>

http://www.conquerchiari.org/subs%20only/volume%204/issue%204(10)/minimal%20teth\

ered%20cord%204(10).asp

, this page did not come up. Any idea why, I wonder?

thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

Sorry, no idea.

Just search " children tethered cord study "

> Dybowski wrote:

>

>>

http://www.conquerchiari.org/subs%20only/volume%204/issue%204(10)/minimal%20teth\

ered%20cord%204(10).asp

>

>, this page did not come up. Any idea why, I wonder?

>

>thanks,

>

>--

> Jamison Griebenow, skookie@...

>Blessed with husband Greg, Zachary c/s 8/95,

>Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

>~~~~~~~

>Learn more about recovery from a difficult birth here:

>http://www.midwiferytoday.com/articles/healing_trauma.asp

>

>You can't pray for what you want, but what you have instead

>You can only offer up your heart and ask that you be led

> ~ Newcomer

[Guest guest]

99.9% of NTD studies are with children. There are only a handful that look

at adults with NTDs, and even fewer that look at adults and TC.

Jenn

On Mon, Mar 28, 2011 at 10:50 PM, Dybowski wrote:

>

>

> Sorry, no idea.

> Just search " children tethered cord study "

>

>

>

>

[Guest guest]

That is very true!

>99.9% of NTD studies are with children. There are only a handful that look

>at adults with NTDs, and even fewer that look at adults and TC.

>

>Jenn

>

>On Mon, Mar 28, 2011 at 10:50 PM, Dybowski wrote:

>

>>

>>

>> Sorry, no idea.

>> Just search " children tethered cord study "

>>

>>

>>

>>

>

>

>

[Guest guest]

That is very true!

>99.9% of NTD studies are with children. There are only a handful that look

>at adults with NTDs, and even fewer that look at adults and TC.

>

>Jenn

>

>On Mon, Mar 28, 2011 at 10:50 PM, Dybowski wrote:

>

>>

>>

>> Sorry, no idea.

>> Just search " children tethered cord study "

>>

>>

>>

>>

>

>

>