Re: 2 different Dr.'s 2 different opinions - what do I do?

[Guest guest]

Oh my gosh, ! How confusing can it be? I think you told us but what

are Emma's bowel and bladder symptoms and if the first NSG doesn't think they

are caused by TCS, did she offer possible alternative diagnoses? Hate to say

it...is a third opinion possible?

hugs, Randee

In a message dated 5/1/2008 10:44:51 A.M. Eastern Daylight Time,

lpizzillo@... writes:

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

do you have evidence of declining urinary function over the last months? I

would consider one more NSG input if that is at all possible and one other

consult with a different urologist if possible....In between all this I would

be losing my last brain cell as I am sure you are as well. You can mail

tests, MRI's etc for consults if need be. Prayers and hugs, Randee

In a message dated 5/1/2008 11:03:43 A.M. Eastern Daylight Time,

lpizzillo@... writes:

No, that's the thing, she gives NO other diagnosis. She says it has

to be urological. The urologists say they've ruled literaly,

everything else out (they've tested her for everything!) and it HAS

to be something in her nerves.

The 2nd NSG had his urologist look at her charts (I believe) and he

agrees with our urologist that it must be something neurological.

Argh.

My DH has lost ALL patience with this and just wants to do the

surgery b/c literally every time we wait her kidneys continue to get

worse and worse. He says we should look at it like the 2nd NSG. The

2nd NSG says that we don't really have anything to lose, she's going

to end up on dialysis like this, this has a 50/50 shot at working.

Then my DH says, look 1 NSG and 2 urologists are in agreement, it's

just the one (who also is the most inexperienced and most

conservative) who isn't in agreement. Yeah, I guess that's one way

to look at it. OR to play devils advocate, maybe it's NOT and we're

putting her through it for nothing.

--- In _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord ) , Randeejae@.., Ra

>

>

> Oh my gosh, ! How confusing can it be? I think you told us

but what

> are Emma's bowel and bladder symptoms and if the first NSG doesn't

think they

> are caused by TCS, did she offer possible alternative diagnoses?

Hate to say

> it...is a third opinion possible?

> hugs, Randee

>

>

>

> In a message dated 5/1/2008 10:44:51 A.M. Eastern Daylight Time,

> lpizzillo@.. lpizzill

>

>

>

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3

with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was

in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI

technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

>

>

>

>

>

>

>

> ************ ************<WBR>**Need a new ride? Check out the largest

used car

> listings at AOL Autos.

> (_http://autos.http://autos.http://autos.<WBhttp://au_

(http://autos.aol.com/used?NCID=aolcmp00300000002851) )

>

>

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

>

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

No, that's the thing, she gives NO other diagnosis. She says it has

to be urological. The urologists say they've ruled literaly,

everything else out (they've tested her for everything!) and it HAS

to be something in her nerves.

The 2nd NSG had his urologist look at her charts (I believe) and he

agrees with our urologist that it must be something neurological.

Argh.

My DH has lost ALL patience with this and just wants to do the

surgery b/c literally every time we wait her kidneys continue to get

worse and worse. He says we should look at it like the 2nd NSG. The

2nd NSG says that we don't really have anything to lose, she's going

to end up on dialysis like this, this has a 50/50 shot at working.

Then my DH says, look 1 NSG and 2 urologists are in agreement, it's

just the one (who also is the most inexperienced and most

conservative) who isn't in agreement. Yeah, I guess that's one way

to look at it. OR to play devils advocate, maybe it's NOT and we're

putting her through it for nothing.

>

>

> Oh my gosh, ! How confusing can it be? I think you told us

but what

> are Emma's bowel and bladder symptoms and if the first NSG doesn't

think they

> are caused by TCS, did she offer possible alternative diagnoses?

Hate to say

> it...is a third opinion possible?

> hugs, Randee

>

>

>

> In a message dated 5/1/2008 10:44:51 A.M. Eastern Daylight Time,

> lpizzillo@... writes:

>

>

>

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3

with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was

in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI

technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

>

>

>

>

>

>

>

> **************Need a new ride? Check out the largest site for U.S.

used car

> listings at AOL Autos.

> (http://autos.aol.com/used?NCID=aolcmp00300000002851)

>

>

>

[Guest guest]

Hi --My heart goes out to you--I cannot imagine what Iwould have felt if

we'd had two differing opinions! It's so hard to make the decision

anyway--especially if you aren't even certain she has TCS. I assume you are

seeing all pediatric docs, so you have to be able to trust them. I wonder how

you feel while talking to each of them--do they put you at ease? I know when we

met the chief of neuro while he was on rounds after Ellie's surgery, I was so

glad he hadn't been the one to treat her-he was, to be blunt, a complete jerk.

No bedside manner, not willing to listen to or answer questions, very

insensetive to Ellie's pain.

I am a big listener to " my gut instinct " and have learned that I am much more at

peace when I follow that. I do know that the turmoil was terrible until we

finally made a decision.

Hugs to you,

Mindy

Re: 2 different Dr.'s 2 different opinions - what do I do?

No, that's the thing, she gives NO other diagnosis. She says it has

to be urological. The urologists say they've ruled literaly,

everything else out (they've tested her for everything!) and it HAS

to be something in her nerves.

The 2nd NSG had his urologist look at her charts (I believe) and he

agrees with our urologist that it must be something neurological.

Argh.

My DH has lost ALL patience with this and just wants to do the

surgery b/c literally every time we wait her kidneys continue to get

worse and worse. He says we should look at it like the 2nd NSG. The

2nd NSG says that we don't really have anything to lose, she's going

to end up on dialysis like this, this has a 50/50 shot at working.

Then my DH says, look 1 NSG and 2 urologists are in agreement, it's

just the one (who also is the most inexperienced and most

conservative) who isn't in agreement. Yeah, I guess that's one way

to look at it. OR to play devils advocate, maybe it's NOT and we're

putting her through it for nothing.

>

>

> Oh my gosh, ! How confusing can it be? I think you told us

but what

> are Emma's bowel and bladder symptoms and if the first NSG doesn't

think they

> are caused by TCS, did she offer possible alternative diagnoses?

Hate to say

> it...is a third opinion possible?

> hugs, Randee

>

>

>

> In a message dated 5/1/2008 10:44:51 A.M. Eastern Daylight Time,

> lpizzillo@.. . writes:

>

>

>

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3

with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was

in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI

technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

>

>

>

>

>

>

>

> ************ **Need a new ride? Check out the largest site for U.S.

used car

> listings at AOL Autos.

> (http://autos. aol.com/used? NCID=aolcmp00300 000002851)

>

>

>

[Guest guest]

Hi ,

I am sorry your daughter is having these problems. It is so hard making this

decision! Seeking out surgical opinions does feel sometimes a bit like asking a

barber if you need a haircut.

We think our daughter may be re-tethered, LOTS of gait issues -- but no bowel &

bladder signs -- and our doctors opinion is that it is not cord related or there

would be b & b signs. This sounds like the opposite of your first doctors

opinion???

Maybe you need a third opinon from another nsg? But from what you have posted,

the older, experienced nsg is the opinon I would lean towards. (Unless you gut

instinct is a solid no).

Do you mind sharing the older nsg's name? You can post to me privately if you

prefer. (Our daughter's cord shows to be more forward also, only we were told

it is normal -- but it does not look right to me....... sigh).

About your pain question. When my daughter was little, she was a whirlwind.

And contrary. And the tantrums that went on and on. And she would never keep

her shoes on. Cried when she had to ride in the car seat. We just could not

figure her out. Most of her early issues were behavior issues. Later, all the

neurological symptoms came with a vengeance. (Her initial diagnosis was Chiari

-- later we learned about tethered cord). After decompression she was a

different child. I believe now that she was in a lot of pain, she just never

expressed it in a way that I understood.

I wish you all the best. It is really tough trying to figure it all out and

second guessing every decision.

's mom

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

Hello , Follow your " gut " . I believe I read a few emails ago that you felt

the older NS was the one to go with...as for B & B issues, I had tethered cord for

37 years with no B & B issues so they cant base it on that. I had surgery, then

injured myself falling from a horse and now I have B & B issues but they say I'm

not retethered (I think I am). is very right in that little ones express

pain very differently, behavioral issues, hyperactivity, trouble

sleeping/nightmares, etc. It is true that the surgery may or may not help the

B & B issues even if it is TC, it is possible the damage is done but maybe not and

it may prevent dialysis. I am so sorry that you are having to make this

decision. My prayers are with you, if you can...in the midst of all this stress

and conflicting information...get still and quiet and just ask, you will get the

answer you need if you listen. Blessings,

Hays wrote: Hi ,

I am sorry your daughter is having these problems. It is so hard making this

decision! Seeking out surgical opinions does feel sometimes a bit like asking a

barber if you need a haircut.

We think our daughter may be re-tethered, LOTS of gait issues -- but no bowel &

bladder signs -- and our doctors opinion is that it is not cord related or there

would be b & b signs. This sounds like the opposite of your first doctors

opinion???

Maybe you need a third opinon from another nsg? But from what you have posted,

the older, experienced nsg is the opinon I would lean towards. (Unless you gut

instinct is a solid no).

Do you mind sharing the older nsg's name? You can post to me privately if you

prefer. (Our daughter's cord shows to be more forward also, only we were told it

is normal -- but it does not look right to me....... sigh).

About your pain question. When my daughter was little, she was a whirlwind. And

contrary. And the tantrums that went on and on. And she would never keep her

shoes on. Cried when she had to ride in the car seat. We just could not figure

her out. Most of her early issues were behavior issues. Later, all the

neurological symptoms came with a vengeance. (Her initial diagnosis was Chiari

-- later we learned about tethered cord). After decompression she was a

different child. I believe now that she was in a lot of pain, she just never

expressed it in a way that I understood.

I wish you all the best. It is really tough trying to figure it all out and

second guessing every decision.

's mom

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

Hi

Your description of ELizabeth sounds just like my Ellie's as a small child--if

only we had known what was happening! SHe went undiagnosed until age 7!

Mindy

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

Thanks everyone!

To answer several questions in on post...here I go!

Yes, my DD has declining bladder function. when she was 8 months old

it started with UTI's and a disteneded bladder. Then the distended

bladder kept getting bigger and bigger, again UTI's. Now it's to the

point where the funtion is going downhill and she has hydronephrosis

in her kidneys.

The Dr. we see her (Dr. #1) is Dr. Yaun at Children's DC. The other

Dr. is Dr. Fuchs at Duke Childrens. Honestly, my gut says Dr. Fuchs

knows what he's saying. He seems very confident, very direct, very

nice. Dr. Yaun, while nice enough doesn't seem to ever be *sure*

whereas Dr. Fuchs, in 5 minutes came in, circled some things,

explained to us, etc. I don't know, my gut says Dr. Fuchs, in fact

we had decided if the NS up here (Yaun) was in agreement we'd STILL

want Dr. Fuchs to do the surgery. So that says something.

Or....he could be a very good BS'er!! LOL! Kidding. ;-)

>

> Hi ,

>

> I am sorry your daughter is having these problems. It is so hard

making this decision! Seeking out surgical opinions does feel

sometimes a bit like asking a barber if you need a haircut.

>

> We think our daughter may be re-tethered, LOTS of gait issues --

but no bowel & bladder signs -- and our doctors opinion is that it is

not cord related or there would be b & b signs. This sounds like the

opposite of your first doctors opinion???

>

> Maybe you need a third opinon from another nsg? But from what you

have posted, the older, experienced nsg is the opinon I would lean

towards. (Unless you gut instinct is a solid no).

>

> Do you mind sharing the older nsg's name? You can post to me

privately if you prefer. (Our daughter's cord shows to be more

forward also, only we were told it is normal -- but it does not look

right to me....... sigh).

>

> About your pain question. When my daughter was little, she was a

whirlwind. And contrary. And the tantrums that went on and on. And

she would never keep her shoes on. Cried when she had to ride in the

car seat. We just could not figure her out. Most of her early

issues were behavior issues. Later, all the neurological symptoms

came with a vengeance. (Her initial diagnosis was Chiari -- later we

learned about tethered cord). After decompression she was a

different child. I believe now that she was in a lot of pain, she

just never expressed it in a way that I understood.

>

> I wish you all the best. It is really tough trying to figure it

all out and second guessing every decision.

>

>

> 's mom

>

>

> 2 different Dr.'s 2 different opinions - what do I

do?

>

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't

feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3

with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was

in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI

technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI.

But

> HE thinks we should do the surgery and it's no question. The

other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of

the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

>

>

>

>

[Guest guest]

Thank you all! I forgot to respond about the behavior thing. That's

SO hard to tell in a young child you know? She sometimes wakes up at

night crying and we never know why. She also sometimes says her back

hurts (in fact she'll lay down on the floor for it) or her toes, but

our NSG up here dismisses it saying it would be constant if it was

TC! But I've read opposite on the internet and the 2nd NS didn't

dismiss it. But I don't know why #1 does! Emma does some days have

tantrums and what makes me question that is, she normally is NOT a

tantrumy child. but sometimes she's awful. It's like 90% of the

time she's fine and some days she'll just cry for no reason and you

ask why and she says " I don't know " so I often wonder if she can't

vocalize pain. Or she could just be 3, LOL!

See what I mean about how all her symptoms just add up? I know the

surgery won't " fix " her, but if it could stop her from getting

worse.... For instance she's not yet at the point of needing

cathing. If we could just stop it NOW maybe as she gets older we

COULD train her to really, really empty do it doubly, every few hours

and at least her bladder wouldn't get any bigger. (It's already

adult size!) KWIM?

Hi ,

>

> I am sorry your daughter is having these problems. It is so hard

making this decision! Seeking out surgical opinions does feel

sometimes a bit like asking a barber if you need a haircut.

>

> We think our daughter may be re-tethered, LOTS of gait issues --

but no bowel & bladder signs -- and our doctors opinion is that it is

not cord related or there would be b & b signs. This sounds like the

opposite of your first doctors opinion???

>

> Maybe you need a third opinon from another nsg? But from what you

have posted, the older, experienced nsg is the opinon I would lean

towards. (Unless you gut instinct is a solid no).

>

> Do you mind sharing the older nsg's name? You can post to me

privately if you prefer. (Our daughter's cord shows to be more

forward also, only we were told it is normal -- but it does not look

right to me....... sigh).

>

> About your pain question. When my daughter was little, she was a

whirlwind. And contrary. And the tantrums that went on and on. And

she would never keep her shoes on. Cried when she had to ride in the

car seat. We just could not figure her out. Most of her early issues

were behavior issues. Later, all the neurological symptoms came with

a vengeance. (Her initial diagnosis was Chiari -- later we learned

about tethered cord). After decompression she was a different child.

I believe now that she was in a lot of pain, she just never expressed

it in a way that I understood.

>

> I wish you all the best. It is really tough trying to figure it all

out and second guessing every decision.

>

>

> 's mom

>

> 2 different Dr.'s 2 different opinions - what do I

do?

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3 with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

[Guest guest]

Wow ...at least now I know for sure your first surgeon may not be well

informed. We found the Tethered Cord because of my daughter's pain which was

NOT constant by any means!! Yes, number #2 is sounding better! Randee

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

hi linda...our girl has always been a long and skinny one ...she did have

both some scoliosis and loridosis which may have been a result of the tethered

cord and which the surgery also halted. Randee

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hi Mindy,

Yes, hindsight and all that. It breaks my heart we missed so many early clues.

But how could we know??? I had never heard of Chiari, or tethered spinal cord.

And the tethered cord diagnosis didn't come for a few years after the Chiari

diagnosis. Even then it was 2 nsg's disagreeing. She was very symptomatic by

that time. 's tc surgery was just a couple months shy of her 7th

birthday also.

Wish there was some way to do the whole " vulcan mind meld " (any star trek fans

out there?) with other members.

Or to be able to relay to doctors why all my mommy alarms are going off, LOL.

All the little quirks that don't count or not taken into consideration.

I try not to let the " if only I'd known " haunt me. Easier said than done :-)

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

,

Thank you for sharing Dr. Fuchs name. You do sound like you are more

comfortable with his explanations.

All 3 of my kids have had different surgeries. My two older boys had hernia

surgeries when they were young. has had 3 big surgeries, Chiari, tc,

and crainial cervical fusion. You'd think it would get easier because we are

used to it -- but it doesn't.

It's a tough decision to make, especially since your DD cannot always verbalize

exactly what is going on. Trust your instincts :-)

2 different Dr.'s 2 different opinions - what do I

do?

>

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't

feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3

with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was

in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI

technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI.

But

> HE thinks we should do the surgery and it's no question. The

other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of

the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

>

>

>

>

[Guest guest]

Hi again :-)

We didn't recognize the behavior issues as pain issues until after surgery.

's whole personality changed. I had to get to know her all over again.

The behavior issues had come on very gradually. 2 and 3 year olds aren't really

known for being compliant, and we just chalked it up to that. She is a

naturally happy, outgoing, vibrant character. Sweet, sensitive, artistic. All

qualities that never emerged until after that first surgery.

Also, there is nothing for little ones to compare their distress to. There

isn't a " norm " if they have chronic pain. (I sincerely hope Emma is NOT in

chronic pain!) What would they measure it to? I'm sad the first nsg. is

dismissive of Emma's back pain - and you mentioned in your post how high her

pain tolerance is. (Same with . High pain tolerance to most stuff,

but goes nuts if her socks don't feel right type of thing. Back ache when she's

more active or going through a rapid growth phase).

When do you see Dr. Fuchs again?

Best wishes,

2 different Dr.'s 2 different opinions - what do I

do?

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3 with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

[Guest guest]

Well, we aren't actually going to see him again right now. Because

we're out of town (we're in VA, he's in NC) he said we could just

send him the MRI on disk and he'd look it then call us. Right now

she's penciled in for surgery on May 14th with him. He urged us to

do that b/c he gets so busy so at least she'd be on the books. So I

guess when he calls we'll decide what to do.

He says in her last MRI since the cord was pulled more forward than

in a " totally normal " MRI, with growth if tethered, it probably would

be a bit more foward and that would be further evidence. So while

everything looks totally normal (where it ends, it's not thickened,

etc), the fact that her cord is more forward means that it could be

tethered and but it's so mild it's not showing up on MRI, however

it's causing damage. He did say our NSG up here was right,

technically it IS a normal MRI, he just said it's that he's seen

sooooo many kids MRI's.... I guess that was a nice way of implying

he knows more? LOL!

So I guess after the phone call we'll decide!

Random question - were any of your children really, really small and

they said it wasn't related, but then they had the surgery and they

grew? Just curious b/c Emma is TINY, short and weighs nothing

(25lbs, at 3 years and 3 months!) They've never found a reason for

it but I always wonder if it's related.

Hi ,

> >

> > I am sorry your daughter is having these problems. It is so

hard

> making this decision! Seeking out surgical opinions does feel

> sometimes a bit like asking a barber if you need a haircut.

> >

> > We think our daughter may be re-tethered, LOTS of gait issues --

> but no bowel & bladder signs -- and our doctors opinion is that

it is

> not cord related or there would be b & b signs. This sounds like

the

> opposite of your first doctors opinion???

> >

> > Maybe you need a third opinon from another nsg? But from what

you

> have posted, the older, experienced nsg is the opinon I would

lean

> towards. (Unless you gut instinct is a solid no).

> >

> > Do you mind sharing the older nsg's name? You can post to me

> privately if you prefer. (Our daughter's cord shows to be more

> forward also, only we were told it is normal -- but it does not

look

> right to me....... sigh).

> >

> > About your pain question. When my daughter was little, she was

a

> whirlwind. And contrary. And the tantrums that went on and on.

And

> she would never keep her shoes on. Cried when she had to ride in

the

> car seat. We just could not figure her out. Most of her early

issues

> were behavior issues. Later, all the neurological symptoms came

with

> a vengeance. (Her initial diagnosis was Chiari -- later we

learned

> about tethered cord). After decompression she was a different

child.

> I believe now that she was in a lot of pain, she just never

expressed

> it in a way that I understood.

> >

> > I wish you all the best. It is really tough trying to figure it

all

> out and second guessing every decision.

> >

> >

> > 's mom

> >

> > 2 different Dr.'s 2 different opinions - what do

I

> do?

> >

> > My DD (Emma) got another MRI yesterday. Her orginal

Neurosurgeon

> > wanted another MRI to see if anything had changed that was

clear

> the

> > first time. Again she said it was perfectly normal and didn't

feel

> > the surgery would help her. She talked about the small

percentage

> of

> > people with a normal MRI who the surgery helped but she said

she

> > didn't feel Emma was one of them b/c her symptoms are only

bowel

> and

> > bladder, NOT walking and normally people with the normal MRI

have

> > walking effected to. And pain, etc. (My question is, Emma is 3

with

> > a very high pain tolerance so how in the heck can you tell if a

3

> > year old is in pain?? One time she had an untreated kidney

> infection

> > where she could barely walk and she didn't even act like she

was in

> > pain!)

> >

> > But anyway, our 2nd opinion Dr. said that while her MRI

technically

> > IS normal, he sees a bit of a difference, that her spinal cord

is

> > more pulled forward and while it's normal it IS positioned

> > differently than a *totally* normal person, KWIM? He showed it

to

> us

> > and circled it. So anyway, we overnighted him this newest MRI.

But

> > HE thinks we should do the surgery and it's no question. The

other

> > Dr. doesn't and thinks it's normal.

> >

> > So who do you trust? The 2nd Dr. is much, much older, the 1st

Dr.

> is

> > very new - she's the attending, whereas the 2nd Dr. is head of

the

> > department and has a lot more experience. My GUT says the 2nd

Dr.

> > probably has seen more and knows more. But I don't want to put

my

> DD

> > through it for nothing if he's " cutting happy " .

> >

> > ACK. I wish everyone agreed and the choice was crystal clear.

has

> > anyone ever been in this position with 2 different opinions?

How

> did

> > you choose? If you were us, who would you trust? (Both are

good,

> > large Children's Hospitals)

> >

> > LInda

> >

> >

[Guest guest]

Hi ,

No, not small. But had teeny tiny little feet that hardly grew until

after her cord release. (Have been told that is simply coincidence by the

doctors).

I have heard of other parents at WACMA (chiari support site) with Chiari kids

that are very small for their age. Maybe something to do with pressure on the

pituitary? It's not one of the things I'm very familiar with because it wasn't

part of 's difficulties, kwim?

Is it possible Emma is tiny because of all the bladder and kidney infections?

Just her little body is working extra all the time and not as much energy for

growth? (I'm guessing and supposing here.)

It would all be so much easier if there was a " gold standard " in regards to

tethered cord treatment and protocols. Chiari stuff is the same way. No two

nsg's seem to agree. Very confusing. I guess there is no gold standard because

there is no such thing as garden variety, common, everyday tc.

Each presentation of signs and symptoms is unique to the individual patient.

Best wishes,

2 different Dr.'s 2 different opinions - what do

I

> do?

> >

> > My DD (Emma) got another MRI yesterday. Her orginal

Neurosurgeon

> > wanted another MRI to see if anything had changed that was

clear

> the

> > first time. Again she said it was perfectly normal and didn't

feel

> > the surgery would help her. She talked about the small

percentage

> of

> > people with a normal MRI who the surgery helped but she said

she

> > didn't feel Emma was one of them b/c her symptoms are only

bowel

> and

> > bladder, NOT walking and normally people with the normal MRI

have

> > walking effected to. And pain, etc. (My question is, Emma is 3

with

> > a very high pain tolerance so how in the heck can you tell if a

3

> > year old is in pain?? One time she had an untreated kidney

> infection

> > where she could barely walk and she didn't even act like she

was in

> > pain!)

> >

> > But anyway, our 2nd opinion Dr. said that while her MRI

technically

> > IS normal, he sees a bit of a difference, that her spinal cord

is

> > more pulled forward and while it's normal it IS positioned

> > differently than a *totally* normal person, KWIM? He showed it

to

> us

> > and circled it. So anyway, we overnighted him this newest MRI.

But

> > HE thinks we should do the surgery and it's no question. The

other

> > Dr. doesn't and thinks it's normal.

> >

> > So who do you trust? The 2nd Dr. is much, much older, the 1st

Dr.

> is

> > very new - she's the attending, whereas the 2nd Dr. is head of

the

> > department and has a lot more experience. My GUT says the 2nd

Dr.

> > probably has seen more and knows more. But I don't want to put

my

> DD

> > through it for nothing if he's " cutting happy " .

> >

> > ACK. I wish everyone agreed and the choice was crystal clear.

has

> > anyone ever been in this position with 2 different opinions?

How

> did

> > you choose? If you were us, who would you trust? (Both are

good,

> > large Children's Hospitals)

> >

> > LInda

> >

> >

[Guest guest]

Hi SHelly

Amazing how different things are now--babies diagnosed at birth--a yahoo chat

group. I could have found lots of info if I'd known what to look for! How old is

now? Ellie is 11--self caths a few times a day--leaks on and off even

with that. She handles it all so well-I am amazed.

Mindy

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

Just a thought, but if the surgery goes forward and the Nsg finds her cord to be

normal, does the surgery put her at any risk for a tether due to scarring? It's

something I would ask--just in case she's not tethered. that seems unlikely

since she is having all the bladder/kidney issues with no other

explanation...but I would still want to know all possible outcomes. I hope he

calls you sonn--May 14 is only two weeks away.

2 different Dr.'s 2 different opinions - what do

I

> do?

> >

> > My DD (Emma) got another MRI yesterday. Her orginal

Neurosurgeon

> > wanted another MRI to see if anything had changed that was

clear

> the

> > first time. Again she said it was perfectly normal and didn't

feel

> > the surgery would help her. She talked about the small

percentage

> of

> > people with a normal MRI who the surgery helped but she said

she

> > didn't feel Emma was one of them b/c her symptoms are only

bowel

> and

> > bladder, NOT walking and normally people with the normal MRI

have

> > walking effected to. And pain, etc. (My question is, Emma is 3

with

> > a very high pain tolerance so how in the heck can you tell if a

3

> > year old is in pain?? One time she had an untreated kidney

> infection

> > where she could barely walk and she didn't even act like she

was in

> > pain!)

> >

> > But anyway, our 2nd opinion Dr. said that while her MRI

technically

> > IS normal, he sees a bit of a difference, that her spinal cord

is

> > more pulled forward and while it's normal it IS positioned

> > differently than a *totally* normal person, KWIM? He showed it

to

> us

> > and circled it. So anyway, we overnighted him this newest MRI.

But

> > HE thinks we should do the surgery and it's no question. The

other

> > Dr. doesn't and thinks it's normal.

> >

> > So who do you trust? The 2nd Dr. is much, much older, the 1st

Dr.

> is

> > very new - she's the attending, whereas the 2nd Dr. is head of

the

> > department and has a lot more experience. My GUT says the 2nd

Dr.

> > probably has seen more and knows more. But I don't want to put

my

> DD

> > through it for nothing if he's " cutting happy " .

> >

> > ACK. I wish everyone agreed and the choice was crystal clear.

has

> > anyone ever been in this position with 2 different opinions?

How

> did

> > you choose? If you were us, who would you trust? (Both are

good,

> > large Children's Hospitals)

> >

> > LInda

> >

> >

[Guest guest]

Tethered Cord pain is not " constant " , I know from 44 years of personal

experiece, I am having less and less confidence in number one.

lpizzillo wrote:

Thank you all! I forgot to respond about the behavior thing. That's

SO hard to tell in a young child you know? She sometimes wakes up at

night crying and we never know why. She also sometimes says her back

hurts (in fact she'll lay down on the floor for it) or her toes, but

our NSG up here dismisses it saying it would be constant if it was

TC! But I've read opposite on the internet and the 2nd NS didn't

dismiss it. But I don't know why #1 does! Emma does some days have

tantrums and what makes me question that is, she normally is NOT a

tantrumy child. but sometimes she's awful. It's like 90% of the

time she's fine and some days she'll just cry for no reason and you

ask why and she says " I don't know " so I often wonder if she can't

vocalize pain. Or she could just be 3, LOL!

See what I mean about how all her symptoms just add up? I know the

surgery won't " fix " her, but if it could stop her from getting

worse.... For instance she's not yet at the point of needing

cathing. If we could just stop it NOW maybe as she gets older we

COULD train her to really, really empty do it doubly, every few hours

and at least her bladder wouldn't get any bigger. (It's already

adult size!) KWIM?

Hi ,

>

> I am sorry your daughter is having these problems. It is so hard

making this decision! Seeking out surgical opinions does feel

sometimes a bit like asking a barber if you need a haircut.

>

> We think our daughter may be re-tethered, LOTS of gait issues --

but no bowel & bladder signs -- and our doctors opinion is that it is

not cord related or there would be b & b signs. This sounds like the

opposite of your first doctors opinion???

>

> Maybe you need a third opinon from another nsg? But from what you

have posted, the older, experienced nsg is the opinon I would lean

towards. (Unless you gut instinct is a solid no).

>

> Do you mind sharing the older nsg's name? You can post to me

privately if you prefer. (Our daughter's cord shows to be more

forward also, only we were told it is normal -- but it does not look

right to me....... sigh).

>

> About your pain question. When my daughter was little, she was a

whirlwind. And contrary. And the tantrums that went on and on. And

she would never keep her shoes on. Cried when she had to ride in the

car seat. We just could not figure her out. Most of her early issues

were behavior issues. Later, all the neurological symptoms came with

a vengeance. (Her initial diagnosis was Chiari -- later we learned

about tethered cord). After decompression she was a different child.

I believe now that she was in a lot of pain, she just never expressed

it in a way that I understood.

>

> I wish you all the best. It is really tough trying to figure it all

out and second guessing every decision.

>

>

> 's mom

>

> 2 different Dr.'s 2 different opinions - what do I

do?

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3 with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

[Guest guest]

Hi Mindy,

is 12 now. Her bladder and bowels are okay. I've noticed some minor

constipation and minor bladder issues. The urologist doesn't seem to think it

is medically significant though. 's main difficulty is gait. (She

would not be able to walk around the block, or through a grocery store). She

seems to accept everything much better than I do. I agree, it's amazing how

well the kids seem to adapt.

Best wishes,

2 different Dr.'s 2 different opinions - what do I do?

My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

wanted another MRI to see if anything had changed that was clear the

first time. Again she said it was perfectly normal and didn't feel

the surgery would help her. She talked about the small percentage of

people with a normal MRI who the surgery helped but she said she

didn't feel Emma was one of them b/c her symptoms are only bowel and

bladder, NOT walking and normally people with the normal MRI have

walking effected to. And pain, etc. (My question is, Emma is 3 with

a very high pain tolerance so how in the heck can you tell if a 3

year old is in pain?? One time she had an untreated kidney infection

where she could barely walk and she didn't even act like she was in

pain!)

But anyway, our 2nd opinion Dr. said that while her MRI technically

IS normal, he sees a bit of a difference, that her spinal cord is

more pulled forward and while it's normal it IS positioned

differently than a *totally* normal person, KWIM? He showed it to us

and circled it. So anyway, we overnighted him this newest MRI. But

HE thinks we should do the surgery and it's no question. The other

Dr. doesn't and thinks it's normal.

So who do you trust? The 2nd Dr. is much, much older, the 1st Dr. is

very new - she's the attending, whereas the 2nd Dr. is head of the

department and has a lot more experience. My GUT says the 2nd Dr.

probably has seen more and knows more. But I don't want to put my DD

through it for nothing if he's " cutting happy " .

ACK. I wish everyone agreed and the choice was crystal clear. has

anyone ever been in this position with 2 different opinions? How did

you choose? If you were us, who would you trust? (Both are good,

large Children's Hospitals)

LInda

[Guest guest]

You will have the desire to second guess yourself whatever you do. Promise

you will try your very best to say, " I made the best decision I could make at

the time. " Hugs, Randee

In a message dated 5/2/2008 6:54:21 A.M. Eastern Daylight Time,

lpizzillo@... writes:

HA HA HA! Is it bad that I want to forward this message to her!?!?

You know from experience. I mean, just how can she dismiss something

where a 2 or 3 year old stops playing and cries for no reason. Oh

it's nothing. Whatever!

Thanks!

--- In _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord ) , Randeejae@.., Ra

>

> Wow ...at least now I know for sure your first surgeon may not

be well

> informed. We found the Tethered Cord because of my daughter's pain

which was

> NOT constant by any means!! Yes, number #2 is sounding better!

Randee

>

>

>

> ************ ************<WBR>**Wondering what's for Dinner Tonigh

on family

> favorites at AOL Food.

> (_http://food.http://food.<WBhttp://food.http://food.<WBRhttp_

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) )

>

>

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

>

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

,

I am so sorry that it took so long to get back to you. Faith had bowel surgery

on Tuesday and her pain control has been uncontrolled so it has been some long

days.

Dr Fuchs is awesome and I trust him completely. He comes very highly recommended

and is by no means a BS er. He just knows what he is looking at. He is a very

good doctor but he does not act all high and mighty about how good he is or

anything. He is just a down to earth good doctor.

We are at Duke now and he has 10 patients with TS right now in the hospital and

looks at this every day.

Just my two cents

Sent from my BlackBerry® wireless device

Re: 2 different Dr.'s 2 different opinions - what do I do?

Thank you all! I forgot to respond about the behavior thing. That's

SO hard to tell in a young child you know? She sometimes wakes up at

night crying and we never know why. She also sometimes says her back

hurts (in fact she'll lay down on the floor for it) or her toes, but

our NSG up here dismisses it saying it would be constant if it was

TC! But I've read opposite on the internet and the 2nd NS didn't

dismiss it. But I don't know why #1 does! Emma does some days have

tantrums and what makes me question that is, she normally is NOT a

tantrumy child. but sometimes she's awful. It's like 90% of the

time she's fine and some days she'll just cry for no reason and you

ask why and she says " I don't know " so I often wonder if she can't

vocalize pain. Or she could just be 3, LOL!

See what I mean about how all her symptoms just add up? I know the

surgery won't " fix " her, but if it could stop her from getting

worse.... For instance she's not yet at the point of needing

cathing. If we could just stop it NOW maybe as she gets older we

COULD train her to really, really empty do it doubly, every few hours

and at least her bladder wouldn't get any bigger. (It's already

adult size!) KWIM?

Hi ,

>

> I am sorry your daughter is having these problems. It is so hard

making this decision! Seeking out surgical opinions does feel

sometimes a bit like asking a barber if you need a haircut.

>

> We think our daughter may be re-tethered, LOTS of gait issues --

but no bowel & bladder signs -- and our doctors opinion is that it is

not cord related or there would be b & b signs. This sounds like the

opposite of your first doctors opinion???

>

> Maybe you need a third opinon from another nsg? But from what you

have posted, the older, experienced nsg is the opinon I would lean

towards. (Unless you gut instinct is a solid no).

>

> Do you mind sharing the older nsg's name? You can post to me

privately if you prefer. (Our daughter's cord shows to be more

forward also, only we were told it is normal -- but it does not look

right to me....... sigh).

>

> About your pain question. When my daughter was little, she was a

whirlwind. And contrary. And the tantrums that went on and on. And

she would never keep her shoes on. Cried when she had to ride in the

car seat. We just could not figure her out. Most of her early issues

were behavior issues. Later, all the neurological symptoms came with

a vengeance. (Her initial diagnosis was Chiari -- later we learned

about tethered cord). After decompression she was a different child.

I believe now that she was in a lot of pain, she just never expressed

it in a way that I understood.

>

> I wish you all the best. It is really tough trying to figure it all

out and second guessing every decision.

>

>

> 's mom

>

> 2 different Dr.'s 2 different opinions - what do I

do?

>

> My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> wanted another MRI to see if anything had changed that was clear

the

> first time. Again she said it was perfectly normal and didn't feel

> the surgery would help her. She talked about the small percentage

of

> people with a normal MRI who the surgery helped but she said she

> didn't feel Emma was one of them b/c her symptoms are only bowel

and

> bladder, NOT walking and normally people with the normal MRI have

> walking effected to. And pain, etc. (My question is, Emma is 3 with

> a very high pain tolerance so how in the heck can you tell if a 3

> year old is in pain?? One time she had an untreated kidney

infection

> where she could barely walk and she didn't even act like she was in

> pain!)

>

> But anyway, our 2nd opinion Dr. said that while her MRI technically

> IS normal, he sees a bit of a difference, that her spinal cord is

> more pulled forward and while it's normal it IS positioned

> differently than a *totally* normal person, KWIM? He showed it to

us

> and circled it. So anyway, we overnighted him this newest MRI. But

> HE thinks we should do the surgery and it's no question. The other

> Dr. doesn't and thinks it's normal.

>

> So who do you trust? The 2nd Dr. is much, much older, the 1st Dr.

is

> very new - she's the attending, whereas the 2nd Dr. is head of the

> department and has a lot more experience. My GUT says the 2nd Dr.

> probably has seen more and knows more. But I don't want to put my

DD

> through it for nothing if he's " cutting happy " .

>

> ACK. I wish everyone agreed and the choice was crystal clear. has

> anyone ever been in this position with 2 different opinions? How

did

> you choose? If you were us, who would you trust? (Both are good,

> large Children's Hospitals)

>

> LInda

>

>

[Guest guest]

Faith weighs 30 pounds and is 7 years 9 months.

It could be due to the constipation and with more growth you possibly see more

tethering symptoms.

I also want to know if there is a connection but have not done enough research

to tell yet.

Sent from my BlackBerry® wireless device

Re: 2 different Dr.'s 2 different opinions - what do I do?

Well, we aren't actually going to see him again right now. Because

we're out of town (we're in VA, he's in NC) he said we could just

send him the MRI on disk and he'd look it then call us. Right now

she's penciled in for surgery on May 14th with him. He urged us to

do that b/c he gets so busy so at least she'd be on the books. So I

guess when he calls we'll decide what to do.

He says in her last MRI since the cord was pulled more forward than

in a " totally normal " MRI, with growth if tethered, it probably would

be a bit more foward and that would be further evidence. So while

everything looks totally normal (where it ends, it's not thickened,

etc), the fact that her cord is more forward means that it could be

tethered and but it's so mild it's not showing up on MRI, however

it's causing damage. He did say our NSG up here was right,

technically it IS a normal MRI, he just said it's that he's seen

sooooo many kids MRI's.... I guess that was a nice way of implying

he knows more? LOL!

So I guess after the phone call we'll decide!

Random question - were any of your children really, really small and

they said it wasn't related, but then they had the surgery and they

grew? Just curious b/c Emma is TINY, short and weighs nothing

(25lbs, at 3 years and 3 months!) They've never found a reason for

it but I always wonder if it's related.

Hi ,

> >

> > I am sorry your daughter is having these problems. It is so

hard

> making this decision! Seeking out surgical opinions does feel

> sometimes a bit like asking a barber if you need a haircut.

> >

> > We think our daughter may be re-tethered, LOTS of gait issues --

> but no bowel & bladder signs -- and our doctors opinion is that

it is

> not cord related or there would be b & b signs. This sounds like

the

> opposite of your first doctors opinion???

> >

> > Maybe you need a third opinon from another nsg? But from what

you

> have posted, the older, experienced nsg is the opinon I would

lean

> towards. (Unless you gut instinct is a solid no).

> >

> > Do you mind sharing the older nsg's name? You can post to me

> privately if you prefer. (Our daughter's cord shows to be more

> forward also, only we were told it is normal -- but it does not

look

> right to me....... sigh).

> >

> > About your pain question. When my daughter was little, she was

a

> whirlwind. And contrary. And the tantrums that went on and on.

And

> she would never keep her shoes on. Cried when she had to ride in

the

> car seat. We just could not figure her out. Most of her early

issues

> were behavior issues. Later, all the neurological symptoms came

with

> a vengeance. (Her initial diagnosis was Chiari -- later we

learned

> about tethered cord). After decompression she was a different

child.

> I believe now that she was in a lot of pain, she just never

expressed

> it in a way that I understood.

> >

> > I wish you all the best. It is really tough trying to figure it

all

> out and second guessing every decision.

> >

> >

> > 's mom

> >

> > 2 different Dr.'s 2 different opinions - what do

I

> do?

> >

> > My DD (Emma) got another MRI yesterday. Her orginal

Neurosurgeon

> > wanted another MRI to see if anything had changed that was

clear

> the

> > first time. Again she said it was perfectly normal and didn't

feel

> > the surgery would help her. She talked about the small

percentage

> of

> > people with a normal MRI who the surgery helped but she said

she

> > didn't feel Emma was one of them b/c her symptoms are only

bowel

> and

> > bladder, NOT walking and normally people with the normal MRI

have

> > walking effected to. And pain, etc. (My question is, Emma is 3

with

> > a very high pain tolerance so how in the heck can you tell if a

3

> > year old is in pain?? One time she had an untreated kidney

> infection

> > where she could barely walk and she didn't even act like she

was in

> > pain!)

> >

> > But anyway, our 2nd opinion Dr. said that while her MRI

technically

> > IS normal, he sees a bit of a difference, that her spinal cord

is

> > more pulled forward and while it's normal it IS positioned

> > differently than a *totally* normal person, KWIM? He showed it

to

> us

> > and circled it. So anyway, we overnighted him this newest MRI.

But

> > HE thinks we should do the surgery and it's no question. The

other

> > Dr. doesn't and thinks it's normal.

> >

> > So who do you trust? The 2nd Dr. is much, much older, the 1st

Dr.

> is

> > very new - she's the attending, whereas the 2nd Dr. is head of

the

> > department and has a lot more experience. My GUT says the 2nd

Dr.

> > probably has seen more and knows more. But I don't want to put

my

> DD

> > through it for nothing if he's " cutting happy " .

> >

> > ACK. I wish everyone agreed and the choice was crystal clear.

has

> > anyone ever been in this position with 2 different opinions?

How

> did

> > you choose? If you were us, who would you trust? (Both are

good,

> > large Children's Hospitals)

> >

> > LInda

> >

> >

[Guest guest]

Hi ,

I'm sorry Faith had to have another surgery and is in such pain!!

Poor little girl! I hope she feels better soon!

Honestly, what you say about Dr. Fuchs is what my gut says too! He

seems great and I hear such good things about him all around! I

definetly think that his opinion is the correct one....we're about

99% sure, LOL, then of course there is always that part " what if " .

Holy cow, that is so reassuring that he does SO many tethered cord

surgies!!

I hope Faith feels better soon! I hope she will NOT be in the

hospital on the 14th and after, but if she is (and we go through with

Emma's, which I'm thinking we most likely will) we'll have to look

for each other.

Hi ,

> >

> > I am sorry your daughter is having these problems. It is so hard

> making this decision! Seeking out surgical opinions does feel

> sometimes a bit like asking a barber if you need a haircut.

> >

> > We think our daughter may be re-tethered, LOTS of gait issues --

> but no bowel & bladder signs -- and our doctors opinion is that it

is

> not cord related or there would be b & b signs. This sounds like

the

> opposite of your first doctors opinion???

> >

> > Maybe you need a third opinon from another nsg? But from what

you

> have posted, the older, experienced nsg is the opinon I would lean

> towards. (Unless you gut instinct is a solid no).

> >

> > Do you mind sharing the older nsg's name? You can post to me

> privately if you prefer. (Our daughter's cord shows to be more

> forward also, only we were told it is normal -- but it does not

look

> right to me....... sigh).

> >

> > About your pain question. When my daughter was little, she was a

> whirlwind. And contrary. And the tantrums that went on and on. And

> she would never keep her shoes on. Cried when she had to ride in

the

> car seat. We just could not figure her out. Most of her early

issues

> were behavior issues. Later, all the neurological symptoms came

with

> a vengeance. (Her initial diagnosis was Chiari -- later we learned

> about tethered cord). After decompression she was a different

child.

> I believe now that she was in a lot of pain, she just never

expressed

> it in a way that I understood.

> >

> > I wish you all the best. It is really tough trying to figure it

all

> out and second guessing every decision.

> >

> >

> > 's mom

> >

> > 2 different Dr.'s 2 different opinions - what do

I

> do?

> >

> > My DD (Emma) got another MRI yesterday. Her orginal Neurosurgeon

> > wanted another MRI to see if anything had changed that was clear

> the

> > first time. Again she said it was perfectly normal and didn't

feel

> > the surgery would help her. She talked about the small

percentage

> of

> > people with a normal MRI who the surgery helped but she said she

> > didn't feel Emma was one of them b/c her symptoms are only bowel

> and

> > bladder, NOT walking and normally people with the normal MRI

have

> > walking effected to. And pain, etc. (My question is, Emma is 3

with

> > a very high pain tolerance so how in the heck can you tell if a

3

> > year old is in pain?? One time she had an untreated kidney

> infection

> > where she could barely walk and she didn't even act like she was

in

> > pain!)

> >

> > But anyway, our 2nd opinion Dr. said that while her MRI

technically

> > IS normal, he sees a bit of a difference, that her spinal cord

is

> > more pulled forward and while it's normal it IS positioned

> > differently than a *totally* normal person, KWIM? He showed it

to

> us

> > and circled it. So anyway, we overnighted him this newest MRI.

But

> > HE thinks we should do the surgery and it's no question. The

other

> > Dr. doesn't and thinks it's normal.

> >

> > So who do you trust? The 2nd Dr. is much, much older, the 1st

Dr.

> is

> > very new - she's the attending, whereas the 2nd Dr. is head of

the

> > department and has a lot more experience. My GUT says the 2nd

Dr.

> > probably has seen more and knows more. But I don't want to put

my

> DD

> > through it for nothing if he's " cutting happy " .

> >

> > ACK. I wish everyone agreed and the choice was crystal clear.

has

> > anyone ever been in this position with 2 different opinions? How

> did

> > you choose? If you were us, who would you trust? (Both are good,

> > large Children's Hospitals)

> >

> > LInda

> >

> >

[Guest guest]

HA HA HA! Is it bad that I want to forward this message to her!?!?

You know from experience. I mean, just how can she dismiss something

where a 2 or 3 year old stops playing and cries for no reason. Oh

it's nothing. Whatever!

Thanks!

>

> Wow ...at least now I know for sure your first surgeon may not

be well

> informed. We found the Tethered Cord because of my daughter's pain

which was

> NOT constant by any means!! Yes, number #2 is sounding better!

Randee

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists

on family

> favorites at AOL Food.

> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

>