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

[Guest guest]

In a message dated 5/1/2008 2:16:15 P.M. Eastern Standard Time,

lpizzillo@... writes:

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.

I'd agree with Dr. Fuchs... DECLINING bladder issues causing health

threatening situations call for action, even if the legs haven't been OBVIOUSLY

affected yet. The legs may even have changes in sensation that just aren't

noticed yet, obvious deformity usually doesn't happen till later on in the

symptom

chain.

If you are on the fence, you can always get another opinion for a tie

breaker!

Connie

Mom to Sara 15, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00), 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) 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/)

S. Jersey

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

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[Guest guest]

I have been taking my daughter (13) to docs since she was 4 because she would

scream that her legs hurt.  We couldn't even walk to the corner (about 6 houses)

without her legs hurting.  The docs told me it just a bad case of growing pains!

lol I told them maybe it would make a little bit of sense IF she grew!!! ugh!

This is still going on....but it goes in spurts, sometimes she goes months

without any leg or back pain.  She had an MRI when she was 2 because I have

Spina Bifida - meningocele - tethered cord. So, they wanted to make sure she

didn't have it.  MRI came back fine.  The new neurologist is doing another MRI

on May 20th.  My NS LOOKED at her and said she is fine. Ugh!

I keep telling them something is not right for a child to have this much leg &

back pain.  One X-Ray showed that she could have spina bifida occulta. My

husband thinks I'm crazy and that I want to find something wrong with her. Ugh!

My mom went from doc to doc telling them there was something wrong for years.

Then finally when I was 10 they did exploritory surgery and WOW! I had/have a

tethered cord and Spina Bifida. UGH!  Doctors can be so stupid sometimes. 

Mothers KNOW when something is not right with there children.

- S.

 

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

To: tetheredspinalcord

Date: Friday, May 2, 2008, 6:54 AM

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= aolfod0003000000 0001)

>

>

>

[Guest guest]

Nothing is worse than knowing there is something wrong and not being able to

discover why or what it is. I hope you daughter is having a good day--being 13

is hard enough without any other distractions! My heart goes out to you both.

I know you probably know this, but if it hasn't been suggested, be sure your MRI

is done with AND without contrast. I had to fight with my insurance co the first

time through bc they wouldn't pay for the contrast. I had to have the NS office

call them to explain. I don't even remember if they paid or we did, but the

comparison of the images made it much easier to diagnose Ellie's TC. Quite

honestly, I think the NS knew what it was when he looked at her back--she had 4

of 5 physical markers in addition to symptoms--the MRI was just to see how

involved the lipoma was with her cord. None of her pediatricians in Atlanta or

Ohio ever even thought it was anything other than a hemangioma.

The second MRI order we had no argument from the ins--imagine that--the doctor

was right!

Good luck on the 20th!

Mindy

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

To: tetheredspinalcord@ yahoogroups. com

Date: Friday, May 2, 2008, 6:54 AM

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= aolfod0003000000 0001)

>

>

>

[Guest guest]

Mindy - She should have it WITHOUT contrast? Also, I've had plenty of MRI and

sometimes that do it w/contrast and sometimes w/o. Why is that?

- S.

 

From: lpizzillo <lpizzilloyahoo (DOT) com>

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

To: tetheredspinalcord@ yahoogroups. com

Date: Friday, May 2, 2008, 6:54 AM

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= aolfod0003000000 0001)

>

>

>

[Guest guest]

I'm not sure--I just know that our nsg insisted that she have both--it took

quite awhile to get all the images, but I guess having them to compare made a

difference to him. We have a disc from both times--the images do show different

things. Sorry I can't tell you why

Mindy

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

To: tetheredspinalcord@ yahoogroups. com

Date: Friday, May 2, 2008, 6:54 AM

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= aolfod0003000000 0001)

>

>

>

[Guest guest]

In a message dated 5/2/2008 9:55:48 A.M. Eastern Standard Time,

smith_1268@... writes:

She should have it WITHOUT contrast? Also, I've had plenty of MRI and

sometimes that do it w/contrast and sometimes w/o. Why is that?

Contrast can potentially cause problems, especially in those whose kidney

function is not optimal, so unless you ABSOLUTELY need it- and most MRIs for

TC do not - I would avoid it.

Connie

Mom to Sara 15, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00), 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) 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/)

S. Jersey

**************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]

Granted, I don't have a normal MRI.........however, my Dr.'s have

told me that Bowel and Bladder problems are often the first Sign/

Symptom to show up in regards to a Symptomatic Tethered Cord.

They told me this, because they were mystified that it wasn't one

of my Symptoms, and never became one.

So, since you have had 2 different Opinions, you might want to get

a 3rd, it never hurts.

You said she could barely walk, yet didn't act like she was in Pain.

In my opinion, her barely being able to walk during that time was her

acting like she was in Pain.

Brande

mymocha@...

> 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!)

>

>

[Guest guest]

I would say yes, because an incision was made and the Cord

explored.........thus Scar Tissue would form.

This would be unfortunate if that ended up to be the case.

Brande

mymocha@...

> 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?