2yr old w/ tethered cord

[Guest guest]

In a message dated 7/10/2008 10:19:25 A.M. Eastern Daylight Time,

corinnglover02@... writes:

My daughter is 2yrs old and had an untethering in Feb 08. She suffered

permanent nerve damage to the colon and as a result has lost bowel

function so she can not pass stool and is now going to require removal

of the colon..... but the Gi doc wants one

now because he claims this has never been seen before where a two yr

old loses all nerves in the bowel so quickly from a tethered cord.

For one thing, it's only five months after the surgery, so the bowel could

still be in shock from the surgery... My son had bladder issues from spinal

shock after his second release that continued for five months, then started

improving. The bowel can do the same thing, especially after a major surgery

with a lipoma release. It is possible also that nerves to the bowel were cut

during the surgery... 's bowels worsened after his second release,

requiring double the amount of laxatives we had needed previously, but the

bowel

nerve had been tangled in the scar tissue and had to be disentangled...

That said, I don't understand why they are talking about removing the colon

only five months after the detethering... sounds very drastic and unlike

anything I have heard before. You can work around having a neurogenic bowel,

many people with TC have lost bowel function and find ways to still get the

stool out. Things can still improve for up to a year or two after the surgery

also...

My son has been laxative dependent since eight months old from a combination

of his TC, nerve issues from Caudal Regression and a physical birth defect

in which he was born with no anal opening and had to have one surgically

corrected. We have been lucky in that a daily stimulant laxative gives him the

contractions to the bowel that he doesn't produce well enough on his own and he

can eliminate stool. If things are too bad for laxatives to work, you can

flush the colon out with daily enemas. Removing the colon can leave you with

chronic diarrhea since the small intestine doesn't take the water out of the

stool, and chronic diarrhea is a lot harder to manage than chronic

constipation... I'd want several top docs who deal with bowel disorders and

bowel

management to tell me that was necessary before letting anyone do that surgery,

and I'd want to have exhausted all other possible management means (meds,

enemas, etc.)... She's only two, and no one is expecting her to be continent

any

time soon... You might want to try a spina bifida clinic to see if they have

a bowel management specialist if you aren't seeing one now...

Connie

Mom to Sara 16, 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/_

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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/_

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[Guest guest]

In a message dated 7/10/2008 11:32:38 A.M. Eastern Daylight Time,

corinnglover02@... writes:

She had her surgery done at Massachsetts General Hospital in Boston, MA

If you are in MA, then I would go to Boston Children's for a second

opinion... Dr. Nurko in the GI department is recommended by several people I

know...

Dr. is the NS...

Connie

Mom to Sara 16, 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

**************Get the scoop on last night's hottest shows and the live music

scene in your area - Check out TourTracker.com!

(http://www.tourtracker.com?NCID=aolmus00050000000112)

[Guest guest]

Hi Everyone,

My daughter is 2yrs old and had an untethering in Feb 08. She suffered

permanant nerve damage to the colon and as a result has lost bowel

function so she can not pass stool and is now going to require removal

of the colon. Her limpoma seems to still be on her back and her spinal

fluid does not seemed to have drained. I personally think that she has

another tetheed cord but am not sure. She still has weakness in the

legs and gets tired quickly. She is a restless sleeper and still does

not seem well. The neuro surgeon does not want to take another MRI

until November so we will not know until then but the Gi doc wants one

now because he claims this has never been seen before where a two yr

old loses all nerves in the bowel so quickly from a tethered cord. I

was wondering if anyone has heard of this happening and if so what was

the outcome of the situation. My baby is so little and going through so

much!!! Please help with your opinons

[Guest guest]

Corinn, I am SO sorry your little one is going through this! As a

mom, I know you are going crazy with frustration. We feel so helpless

when our children are suffering and we cannot " fix it " . I guess my

question is, were her bowels working before the surgery? Your GI doc

is right, very rare to lose all function so quickly from a TC but not

uncommon from a botched surgery. However, she is still within a year

of the surgery and it takes awhile for the body to adjust to the

changes...give it time, obviously they have to do something for her

to be able to stool...have they tried something to stimulate the

function, from above and below, ie stool softeners, laxatives,

suppositories? Sorry, I am not even sure they make laxatives for one

so young. The leg weakness may yet improve with time, the

restlessness?? Is she hurting? I know it is difficult to tell with a

two year old. Make sure she is not getting too much sugar (even from

juices) and certainly no caffiene. Try some chamomile drops in her

last drink of the day (healthfood store). If they only " released "

the cord and did not remove the lipoma or drain the fluid then it

would still be there. Does the NS that did her surgery have a lot of

TC patients? If he/she does not have a LOT of TC surgeries under his

belt then please find a more experienced doc. Third opinions never

hurt, mine saved me from being in a wheelchair for the past 8 years.

Many Many Blessings,

>

> Hi Everyone,

> My daughter is 2yrs old and had an untethering in Feb 08. She

suffered

> permanant nerve damage to the colon and as a result has lost bowel

> function so she can not pass stool and is now going to require

removal

> of the colon. Her limpoma seems to still be on her back and her

spinal

> fluid does not seemed to have drained. I personally think that she

has

> another tetheed cord but am not sure. She still has weakness in the

> legs and gets tired quickly. She is a restless sleeper and still

does

> not seem well. The neuro surgeon does not want to take another MRI

> until November so we will not know until then but the Gi doc wants

one

> now because he claims this has never been seen before where a two

yr

> old loses all nerves in the bowel so quickly from a tethered cord.

I

> was wondering if anyone has heard of this happening and if so what

was

> the outcome of the situation. My baby is so little and going

through so

> much!!! Please help with your opinons

>

[Guest guest]

I am so sorry to hear that the untethering wasn't a success. My recommendation

to you is to get another opinion right away from a pediatric neurasurgeon and

another opinion form a pediatric GI and Urologist. And, if the GI you are

currently seeing wants to MRI, get it done asap.

I would also queston the removal of the colon--there are many different bowel

management programs available that may be helpful to you--I would try everything

before making such a huge decision.

Where did you have your surgery and what does the neuro say about the total loss

of bowel function? Were you told this was a possibility prior to deciding to

have the surgery?

Keep asking questions and hold the doc accountable to answer them before you do

anything else.

Mindy

2yr old w/ tethered cord

Hi Everyone,

My daughter is 2yrs old and had an untethering in Feb 08. She suffered

permanant nerve damage to the colon and as a result has lost bowel

function so she can not pass stool and is now going to require removal

of the colon. Her limpoma seems to still be on her back and her spinal

fluid does not seemed to have drained. I personally think that she has

another tetheed cord but am not sure. She still has weakness in the

legs and gets tired quickly. She is a restless sleeper and still does

not seem well. The neuro surgeon does not want to take another MRI

until November so we will not know until then but the Gi doc wants one

now because he claims this has never been seen before where a two yr

old loses all nerves in the bowel so quickly from a tethered cord. I

was wondering if anyone has heard of this happening and if so what was

the outcome of the situation. My baby is so little and going through so

much!!! Please help with your opinons

[Guest guest]

thank you soo much. I have had a few opinons but all the pedi dosc say they have

never seen this before. My daughter was born with bowel problems and after a

full work up and severl surgeries it was determined that she had a tethered

cord. I was told that her bowel function should improve within 48 hours after

surgery but that was not the case. She had a test done and it shoed she lost 99%

neve function which meant it can never return. The GI wants to try a ileostomey

but the GI surgeon says it will not work due to the fact it is the entire colon

and not just a portion. A colostomy will not work either because there is

absolutly no nerve function so removal of the colon is their answer.I would like

for her to have a transplant but that is hard at her age to find an donor. I

believe she is still tethered due to the symtoms she is showing. The fatty lump

is still there and she still has leg weakness.Her vladder function is fine but I

am worried that she

will begin to lose that as well. All the docs I have seen say that to lose the

complete colon in such a short span of time has not been seen before so they

believe  she may still have a tethered cord but that would also be rare for it

to grow back so quickly. She had a back up of spinal fluid which was not drained

and it is still backed up. She had her surgery done at Massachsetts General

Hospital in Boston, MA 

Subject: Re: 2yr old w/ tethered cord

To: tetheredspinalcord

Date: Thursday, July 10, 2008, 11:07 AM

I am so sorry to hear that the untethering wasn't a success. My recommendation

to you is to get another opinion right away from a pediatric neurasurgeon and

another opinion form a pediatric GI and Urologist. And, if the GI you are

currently seeing wants to MRI, get it done asap.

I would also queston the removal of the colon--there are many different bowel

management programs available that may be helpful to you--I would try everything

before making such a huge decision.

Where did you have your surgery and what does the neuro say about the total loss

of bowel function? Were you told this was a possibility prior to deciding to

have the surgery?

Keep asking questions and hold the doc accountable to answer them before you do

anything else.

Mindy

2yr old w/ tethered cord

Hi Everyone,

My daughter is 2yrs old and had an untethering in Feb 08. She suffered

permanant nerve damage to the colon and as a result has lost bowel

function so she can not pass stool and is now going to require removal

of the colon. Her limpoma seems to still be on her back and her spinal

fluid does not seemed to have drained. I personally think that she has

another tetheed cord but am not sure. She still has weakness in the

legs and gets tired quickly. She is a restless sleeper and still does

not seem well. The neuro surgeon does not want to take another MRI

until November so we will not know until then but the Gi doc wants one

now because he claims this has never been seen before where a two yr

old loses all nerves in the bowel so quickly from a tethered cord. I

was wondering if anyone has heard of this happening and if so what was

the outcome of the situation. My baby is so little and going through so

much!!! Please help with your opinons

[Guest guest]

I`ve already been to see both of them...I saw them before I went to MGH

but thank you

[Guest guest]

I go to Dr. at Children's in Boston and he is currently my

neurosurgeon. I've had 3 de-tetherings, my last a year ago in May 2007. My

third surgery left me with nerve damage to my right calf and foot. Dr.

says nerves can regenerate and regenerate quicker in children, than adults.

With that said, with all de-tethering surgery there are risks. I am so very

sorry to hear about yours. Please most definately go to Children's for both

a GI and Nsg consult (2nd opinion) once you remove something in it's

entirity such as her whole colon -- there is NO going back. What's done is

done -- and at such a young age -- I just feel my own gut instinct bell

going off -- saying " wait " .. but I am not you, and with that said only you

and your family can make this most serious of decisions & life choices for

your daughter.

Dr. is wonderful, kind and very through. He truly cares about each and

every one of his patients and takes the time to meet with them, without

looking at the clock. I wish you and your family all the best of luck -- I

would lastly highly recommend joining our sister yahoo health group

" familieswithtetheredcord " -- it is comprised of parents & families

originally from 'this' health group. We made a conscious well thought out

decision to split -- in order to allow more room for growth.

Please let us know how you are doing.

--

Dileas, Dochas, Agus Gra,

~ With Faith, Hope & Love ~

_________________________________

" Stability and peace in our land will not come from the barrel of a gun,

because peace without justice is an impossibility. "

-- Bishop Desmond Tutu

(1931- ) Nobel Prize for Peace 1984

" Ask questions from your heart and you will be answered from the heart. "

-- Omaha Nation Proverb

[Guest guest]

I would second that nerves do regenerate, even in old people like me, I would

assume that children would heal even faster. Is there no way to give it some

time before making such a permenent decision?                                

Blessings,

Subject: Re: 2yr old w/ tethered cord

To: tetheredspinalcord

Date: Friday, July 11, 2008, 3:12 AM

I go to Dr. at Children's in Boston and he is currently my

neurosurgeon. I've had 3 de-tetherings, my last a year ago in May 2007. My

third surgery left me with nerve damage to my right calf and foot. Dr.

says nerves can regenerate and regenerate quicker in children, than adults.

With that said, with all de-tethering surgery there are risks. I am so very

sorry to hear about yours. Please most definately go to Children's for both

a GI and Nsg consult (2nd opinion) once you remove something in it's

entirity such as her whole colon -- there is NO going back. What's done is

done -- and at such a young age -- I just feel my own gut instinct bell

going off -- saying " wait " .. but I am not you, and with that said only you

and your family can make this most serious of decisions & life choices for

your daughter.

Dr. is wonderful, kind and very through. He truly cares about each and

every one of his patients and takes the time to meet with them, without

looking at the clock. I wish you and your family all the best of luck -- I

would lastly highly recommend joining our sister yahoo health group

" familieswithtether edcord " -- it is comprised of parents & families

originally from 'this' health group. We made a conscious well thought out

decision to split -- in order to allow more room for growth.

Please let us know how you are doing.

--

Dileas, Dochas, Agus Gra,

~ With Faith, Hope & Love ~

____________ _________ _________ ___

" Stability and peace in our land will not come from the barrel of a gun,

because peace without justice is an impossibility. "

-- Bishop Desmond Tutu

(1931- ) Nobel Prize for Peace 1984

" Ask questions from your heart and you will be answered from the heart. "

-- Omaha Nation Proverb