Re: there once was a woman....

[Guest guest]

,

Can I get the email id of Dr. Wehby? You can reply to me directly if

you wish.

Thanks, Abby.

>

> ok everybody....I've gotten a few inquiries about Dr. Wehby and

> TCI. Asking who she is...whether there's a connection...etc. So, let

> me tell you a story (my facts may be slightly off...but for the most

> part, this is fact).

> Dr. Wehby is a ns at Emmanuel's Children's Hospital in Portland

> OR. She recently published findings stating that Occult Tight Filum

> Terminale CAN occur with the conus still appearing to end at the

> normal level of L1/L2 (not being pulled down lower). These findings

> were (probably still are) quite controversial but alot of doctors are

> starting to take notice.

> Most of you probably know Charnel (she's a member here on our message

> board). Charnel was diagnosed with chiari at TCI. I don't remember

> when exactly...and I don't remember whether she was decompressed.

> Charnel has 3 children. Sometime later (after her diagnosis at TCI)

> she started to notice various bladder problems in her children (I

> think there were a few other symptoms too...maybe leg pain or

> headaches? I dont' remember).

> Charnel just so happens to live in Oregon. She took her children to a

> doctor. She told the doctor that she, herself, was diagnosed with

> chiari malformation. Somehow or other...because of Dr. Wehby's well-

> known work with Occult Tight Filum Terminale...this doctor had the

> insight to say " we're going to refer all 3 of your children to be

> evaluated for OTFT because we're starting to notice that chiari and

> OTFT often occur together " . Well, guess what! Sure enough, all THREE

> of Charnel's children were found to have OTFT. All three were

> detethered and noticed at least some improvement of symptoms. So,

> now, it occurred to Charnel that SHE probably had OTFT. She went to

> Dr. B and told him of her suspicions. At first, he was skeptical.

> BUT, being the wonderful, open minded man he is, he agreed to

> prescribe the testing she needed. Yaddayaddayadda....Charnel was

> diagnosed with OTFT as well. After this, TCI started evaluating

> people with chiari I differently and LOTS more people (including

> myself) are being found to have OTFT. End of story.....

> You can search the internet for " Wehby Occult Tight Filum

> Terminale " and you will find her study.

>

> Keep in mind that, also recently, Dr. Royo Salvador in Barcelona has

> come out with a study saying OTFT is the cause of Chiari I - period.

> This is a pretty general assumption...so, it's hard to tell if it has

> real merit or not yet. Who knows...maybe you can have asymptomatic

> OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

> everyone with chairi does have OTFT? Lots of unknowns...

>

> Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

> means of detecting OTFT.

>

> Charnel, please feel free to add/correct any mistakes I've made in my

> post.

>

>

[Guest guest]

Okay - Thanks !

I haven't read the study yet, but Dr. Wehby said it was going to be published

soon (this was when we were there for a re-check awhile ago).

I think I've read somewhere along the way, that the neural tube begins forming

in the middle and works its way out to both ends. If there is a problem at one

end of the cord, it makes sense to me that there may be a problem at the other

end also. Not that each end would always be symptomatic if anomalies were

found.

We leave for NY today. Testing on Thurs. Meeting of the minds on Friday. Hope

we get this figured out, she's losing ground again.

Thanks for all your info!

there once was a woman....

ok everybody....I've gotten a few inquiries about Dr. Wehby and

TCI. Asking who she is...whether there's a connection...etc. So, let

me tell you a story (my facts may be slightly off...but for the most

part, this is fact).

Dr. Wehby is a ns at Emmanuel's Children's Hospital in Portland

OR. She recently published findings stating that Occult Tight Filum

Terminale CAN occur with the conus still appearing to end at the

normal level of L1/L2 (not being pulled down lower). These findings

were (probably still are) quite controversial but alot of doctors are

starting to take notice.

Most of you probably know Charnel (she's a member here on our message

board). Charnel was diagnosed with chiari at TCI. I don't remember

when exactly...and I don't remember whether she was decompressed.

Charnel has 3 children. Sometime later (after her diagnosis at TCI)

she started to notice various bladder problems in her children (I

think there were a few other symptoms too...maybe leg pain or

headaches? I dont' remember).

Charnel just so happens to live in Oregon. She took her children to a

doctor. She told the doctor that she, herself, was diagnosed with

chiari malformation. Somehow or other...because of Dr. Wehby's well-

known work with Occult Tight Filum Terminale...this doctor had the

insight to say " we're going to refer all 3 of your children to be

evaluated for OTFT because we're starting to notice that chiari and

OTFT often occur together " . Well, guess what! Sure enough, all THREE

of Charnel's children were found to have OTFT. All three were

detethered and noticed at least some improvement of symptoms. So,

now, it occurred to Charnel that SHE probably had OTFT. She went to

Dr. B and told him of her suspicions. At first, he was skeptical.

BUT, being the wonderful, open minded man he is, he agreed to

prescribe the testing she needed. Yaddayaddayadda....Charnel was

diagnosed with OTFT as well. After this, TCI started evaluating

people with chiari I differently and LOTS more people (including

myself) are being found to have OTFT. End of story.....

You can search the internet for " Wehby Occult Tight Filum

Terminale " and you will find her study.

Keep in mind that, also recently, Dr. Royo Salvador in Barcelona has

come out with a study saying OTFT is the cause of Chiari I - period.

This is a pretty general assumption...so, it's hard to tell if it has

real merit or not yet. Who knows...maybe you can have asymptomatic

OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

everyone with chairi does have OTFT? Lots of unknowns...

Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

means of detecting OTFT.

Charnel, please feel free to add/correct any mistakes I've made in my

post.

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

[Guest guest]

This is very interesting, thank you, here's the abstract

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract & ProduktNr=\

224273 & Ausgabe=230230 & ArtikelNr=78908<http://content.karger.com/ProdukteDB/produ\

kte.asp?Aktion=ShowAbstract & ProduktNr=224273 & Ausgabe=230230 & ArtikelNr=78908>

there once was a woman....

ok everybody....I've gotten a few inquiries about Dr. Wehby and

TCI. Asking who she is...whether there's a connection...etc. So, let

me tell you a story (my facts may be slightly off...but for the most

part, this is fact).

Dr. Wehby is a ns at Emmanuel's Children's Hospital in Portland

OR. She recently published findings stating that Occult Tight Filum

Terminale CAN occur with the conus still appearing to end at the

normal level of L1/L2 (not being pulled down lower). These findings

were (probably still are) quite controversial but alot of doctors are

starting to take notice.

Most of you probably know Charnel (she's a member here on our message

board). Charnel was diagnosed with chiari at TCI. I don't remember

when exactly...and I don't remember whether she was decompressed.

Charnel has 3 children. Sometime later (after her diagnosis at TCI)

she started to notice various bladder problems in her children (I

think there were a few other symptoms too...maybe leg pain or

headaches? I dont' remember).

Charnel just so happens to live in Oregon. She took her children to a

doctor. She told the doctor that she, herself, was diagnosed with

chiari malformation. Somehow or other...because of Dr. Wehby's well-

known work with Occult Tight Filum Terminale...this doctor had the

insight to say " we're going to refer all 3 of your children to be

evaluated for OTFT because we're starting to notice that chiari and

OTFT often occur together " . Well, guess what! Sure enough, all THREE

of Charnel's children were found to have OTFT. All three were

detethered and noticed at least some improvement of symptoms. So,

now, it occurred to Charnel that SHE probably had OTFT. She went to

Dr. B and told him of her suspicions. At first, he was skeptical.

BUT, being the wonderful, open minded man he is, he agreed to

prescribe the testing she needed. Yaddayaddayadda....Charnel was

diagnosed with OTFT as well. After this, TCI started evaluating

people with chiari I differently and LOTS more people (including

myself) are being found to have OTFT. End of story.....

You can search the internet for " Wehby Occult Tight Filum

Terminale " and you will find her study.

Keep in mind that, also recently, Dr. Royo Salvador in Barcelona has

come out with a study saying OTFT is the cause of Chiari I - period.

This is a pretty general assumption...so, it's hard to tell if it has

real merit or not yet. Who knows...maybe you can have asymptomatic

OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

everyone with chairi does have OTFT? Lots of unknowns...

Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

means of detecting OTFT.

Charnel, please feel free to add/correct any mistakes I've made in my

post.

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

[Guest guest]

Charnel, were you at TCI April 11th with your husband and children ?

>

> ok everybody....I've gotten a few inquiries about Dr. Wehby and

> TCI. Asking who she is...whether there's a connection...etc. So, let

> me tell you a story (my facts may be slightly off...but for the most

> part, this is fact).

> Dr. Wehby is a ns at Emmanuel's Children's Hospital in Portland

> OR. She recently published findings stating that Occult Tight Filum

> Terminale CAN occur with the conus still appearing to end at the

> normal level of L1/L2 (not being pulled down lower). These findings

> were (probably still are) quite controversial but alot of doctors are

> starting to take notice.

> Most of you probably know Charnel (she's a member here on our message

> board). Charnel was diagnosed with chiari at TCI. I don't remember

> when exactly...and I don't remember whether she was decompressed.

> Charnel has 3 children. Sometime later (after her diagnosis at TCI)

> she started to notice various bladder problems in her children (I

> think there were a few other symptoms too...maybe leg pain or

> headaches? I dont' remember).

> Charnel just so happens to live in Oregon. She took her children to a

> doctor. She told the doctor that she, herself, was diagnosed with

> chiari malformation. Somehow or other...because of Dr. Wehby's well-

> known work with Occult Tight Filum Terminale...this doctor had the

> insight to say " we're going to refer all 3 of your children to be

> evaluated for OTFT because we're starting to notice that chiari and

> OTFT often occur together " . Well, guess what! Sure enough, all THREE

> of Charnel's children were found to have OTFT. All three were

> detethered and noticed at least some improvement of symptoms. So,

> now, it occurred to Charnel that SHE probably had OTFT. She went to

> Dr. B and told him of her suspicions. At first, he was skeptical.

> BUT, being the wonderful, open minded man he is, he agreed to

> prescribe the testing she needed. Yaddayaddayadda....Charnel was

> diagnosed with OTFT as well. After this, TCI started evaluating

> people with chiari I differently and LOTS more people (including

> myself) are being found to have OTFT. End of story.....

> You can search the internet for " Wehby Occult Tight Filum

> Terminale " and you will find her study.

>

> Keep in mind that, also recently, Dr. Royo Salvador in Barcelona has

> come out with a study saying OTFT is the cause of Chiari I - period.

> This is a pretty general assumption...so, it's hard to tell if it has

> real merit or not yet. Who knows...maybe you can have asymptomatic

> OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

> everyone with chairi does have OTFT? Lots of unknowns...

>

> Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

> means of detecting OTFT.

>

> Charnel, please feel free to add/correct any mistakes I've made in my

> post.

>

>

[Guest guest]

,

Your sequence is a bit off but mostly you were right. Wehby

detethered all three of the kids. I do not know what her current

opinion on chiari and TCI is but when I talked to her a year ago she

wasn't all that enthusiastic on a lot of their thoughts about tethered

cord. Of course that was before the TCI docs started recognising and

treating OTFT. Before my surgery if you did not have a glaringly low

conus the TCI docs would not detether. I would have to agree with DR

Wehby that ignoring the OTFT was a mistake on the part of TCI but this

feild is so new things are bound to be missed at some point. If the

docs knew everything they would not " practice " medicine they would

perform it.

For those of you interested in contacting Dr Wehby as an adult patient

you might be disappointed. She has had her malpractice insurance put

their foot down and last I heard is no longer doing adult detethering.

Before he only accepted adult pts from families of children she had

already treated. If you have ACM and EDS she might not be the best

idea anyway. The type of detethering she normally performs is a

" closed proceedure " where she makes a very small incision and only

cuts the filum. There are cases (my daughter Mackenzie and I are

examples) of pts that have EDS where there are additional bands of

connective tissue also tether the conus. For me it was no big deal

because the TCI docs use an open proceedure and caught it. Mackenzie

will now need a second surgery to cut her bands at her conus.

Charnel

>

> ok everybody....I've gotten a few inquiries about Dr. Wehby and

> TCI. Asking who she is...whether there's a connection...etc. So, let

> me tell you a story (my facts may be slightly off...but for the most

> part, this is fact).

> Dr. Wehby is a ns at Emmanuel's Children's Hospital in Portland

> OR. She recently published findings stating that Occult Tight Filum

> Terminale CAN occur with the conus still appearing to end at the

> normal level of L1/L2 (not being pulled down lower). These findings

> were (probably still are) quite controversial but alot of doctors are

> starting to take notice.

> Most of you probably know Charnel (she's a member here on our message

> board). Charnel was diagnosed with chiari at TCI. I don't remember

> when exactly...and I don't remember whether she was decompressed.

> Charnel has 3 children. Sometime later (after her diagnosis at TCI)

> she started to notice various bladder problems in her children (I

> think there were a few other symptoms too...maybe leg pain or

> headaches? I dont' remember).

> Charnel just so happens to live in Oregon. She took her children to a

> doctor. She told the doctor that she, herself, was diagnosed with

> chiari malformation. Somehow or other...because of Dr. Wehby's well-

> known work with Occult Tight Filum Terminale...this doctor had the

> insight to say " we're going to refer all 3 of your children to be

> evaluated for OTFT because we're starting to notice that chiari and

> OTFT often occur together " . Well, guess what! Sure enough, all THREE

> of Charnel's children were found to have OTFT. All three were

> detethered and noticed at least some improvement of symptoms. So,

> now, it occurred to Charnel that SHE probably had OTFT. She went to

> Dr. B and told him of her suspicions. At first, he was skeptical.

> BUT, being the wonderful, open minded man he is, he agreed to

> prescribe the testing she needed. Yaddayaddayadda....Charnel was

> diagnosed with OTFT as well. After this, TCI started evaluating

> people with chiari I differently and LOTS more people (including

> myself) are being found to have OTFT. End of story.....

> You can search the internet for " Wehby Occult Tight Filum

> Terminale " and you will find her study.

>

> Keep in mind that, also recently, Dr. Royo Salvador in Barcelona has

> come out with a study saying OTFT is the cause of Chiari I - period.

> This is a pretty general assumption...so, it's hard to tell if it has

> real merit or not yet. Who knows...maybe you can have asymptomatic

> OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

> everyone with chairi does have OTFT? Lots of unknowns...

>

> Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

> means of detecting OTFT.

>

> Charnel, please feel free to add/correct any mistakes I've made in my

> post.

>

>

[Guest guest]

Yep that was us.

Charnel

>

>

> Charnel, were you at TCI April 11th with your husband and children ?

>

[Guest guest]

The closed procedure is the endoscopic procedure. This is the ideal

one if there are no other contributing factors (chiari,EDS,compressed

vertebral discs,scar tissue tethering from spina bifida surgery, etc)

than tight filum. The incision is small and the procedure is less

invasive making surgery length and recovery time shorter. The closed

procedure is a lot easier on children. My son who was three at the

time of his surgery went home with a big bandage on his head because

he was jumping on the bed the morning after his surgery. (and speaking

in complete sentences for the first time in his life!) The hospital

stay is usually overnight.

If it is suspected there are additional bands of tissue tethering at

the conus level the open procedure should be used. It appears that

these bands of tissue are not very common so the need for the open

lysis of the filum terminale is not common in children. Another

reason for the open procedure would be if there is additional need for

decompression of the nerve roots. Sometimes tethered cord issues are

more than just tethering and are a combination of tethering and

compression by the vertebrae itself. This is mostly seen in adults

who have a higher incidence disc problems. The open proceedure is a

lot more invasive. I have a four inch scar on my back compared to the

less than one inch scar from the closed procedure. I was in the

hospital for 5 days as opposed to overnight.

Charnel

> > >

> > > ok everybody....I've gotten a few inquiries about Dr. Wehby

> and

> > > TCI. Asking who she is...whether there's a connection...etc. So,

> let

> > > me tell you a story (my facts may be slightly off...but for the

most

> > > part, this is fact).

> > > Dr. Wehby is a ns at Emmanuel's Children's Hospital in

> Portland

> > > OR. She recently published findings stating that Occult Tight

Filum

> > > Terminale CAN occur with the conus still appearing to end at the

> > > normal level of L1/L2 (not being pulled down lower). These

findings

> > > were (probably still are) quite controversial but alot of

doctors are

> > > starting to take notice.

> > > Most of you probably know Charnel (she's a member here on our

message

> > > board). Charnel was diagnosed with chiari at TCI. I don't

remember

> > > when exactly...and I don't remember whether she was decompressed.

> > > Charnel has 3 children. Sometime later (after her diagnosis at

TCI)

> > > she started to notice various bladder problems in her children (I

> > > think there were a few other symptoms too...maybe leg pain or

> > > headaches? I dont' remember).

> > > Charnel just so happens to live in Oregon. She took her children

> to a

> > > doctor. She told the doctor that she, herself, was diagnosed with

> > > chiari malformation. Somehow or other...because of Dr. Wehby's

well-

> > > known work with Occult Tight Filum Terminale...this doctor had the

> > > insight to say " we're going to refer all 3 of your children to be

> > > evaluated for OTFT because we're starting to notice that chiari and

> > > OTFT often occur together " . Well, guess what! Sure enough, all

> THREE

> > > of Charnel's children were found to have OTFT. All three were

> > > detethered and noticed at least some improvement of symptoms. So,

> > > now, it occurred to Charnel that SHE probably had OTFT. She

went to

> > > Dr. B and told him of her suspicions. At first, he was skeptical.

> > > BUT, being the wonderful, open minded man he is, he agreed to

> > > prescribe the testing she needed. Yaddayaddayadda....Charnel was

> > > diagnosed with OTFT as well. After this, TCI started evaluating

> > > people with chiari I differently and LOTS more people (including

> > > myself) are being found to have OTFT. End of story.....

> > > You can search the internet for " Wehby Occult Tight Filum

> > > Terminale " and you will find her study.

> > >

> > > Keep in mind that, also recently, Dr. Royo Salvador in Barcelona

has

> > > come out with a study saying OTFT is the cause of Chiari I -

period.

> > > This is a pretty general assumption...so, it's hard to tell if

it has

> > > real merit or not yet. Who knows...maybe you can have asymptomatic

> > > OTFT? Or, maybe not everyone with chiari has OTFT? Or, maybe

> > > everyone with chairi does have OTFT? Lots of unknowns...

> > >

> > > Both, Dr. Wehby and Dr. Salvador say that CINE is the only reliable

> > > means of detecting OTFT.

> > >

> > > Charnel, please feel free to add/correct any mistakes I've made

in my

> > > post.

> > >

> > >

> >

>

[Guest guest]

Charnel,

I think you make a distinction between tight filum and fatty filum.

Is the endoscopic surgery performed for both tight filum and fatty

filum? Is that the normal choice if there are no other

complications?

Our case is a bit different. My daughter has a very thin, spaghetti

like strand of fat (lipoma) with one end at conus and one end at L3.

The conus ends at normal postion - L1. There is no nerve

involvement/entanglement. She is 6 months old. We have scheduled the

de-tethering for May 31st.

The unusualness of her case is that the lipoma is really thin and

small. There is no other defect of the dura or the spine

(vertebrae). So according to ns if you remove this this thin strand

of fat, then everything is totally normal.

Several ns who have looked at her MRI have commented on the

unusualness of this case. They say they expect the tethering to be

at the filum, but instead it is at the conus. The proposed surgery

for her is like the fatty filum surgery according to the ns. They

are just going to snip out a section of the fat strand. The ns said

that the external incision will be about an inch, and the hospital

stay will be 2 days (going in wednesday, and coming out friday). I

am now wondering if hers could be an endoscopic procedure, and if

not if she would be a candidate for the endoscopic procedure.

Obviously I need to ask my ns, but that takes time - so I thought I

would just ask here first.

Thanks, Abby.

> > > >

> > > > ok everybody....I've gotten a few inquiries about Dr.

Wehby

> > and

> > > > TCI. Asking who she is...whether there's a

connection...etc. So,

> > let

> > > > me tell you a story (my facts may be slightly off...but for

the

> most

> > > > part, this is fact).

> > > > Dr. Wehby is a ns at Emmanuel's Children's Hospital in

> > Portland

> > > > OR. She recently published findings stating that Occult

Tight

> Filum

> > > > Terminale CAN occur with the conus still appearing to end at

the

> > > > normal level of L1/L2 (not being pulled down lower). These

> findings

> > > > were (probably still are) quite controversial but alot of

> doctors are

> > > > starting to take notice.

> > > > Most of you probably know Charnel (she's a member here on our

> message

> > > > board). Charnel was diagnosed with chiari at TCI. I don't

> remember

> > > > when exactly...and I don't remember whether she was

decompressed.

> > > > Charnel has 3 children. Sometime later (after her diagnosis

at

> TCI)

> > > > she started to notice various bladder problems in her

children (I

> > > > think there were a few other symptoms too...maybe leg pain

or

> > > > headaches? I dont' remember).

> > > > Charnel just so happens to live in Oregon. She took her

children

> > to a

> > > > doctor. She told the doctor that she, herself, was

diagnosed with

> > > > chiari malformation. Somehow or other...because of Dr.

Wehby's

> well-

> > > > known work with Occult Tight Filum Terminale...this doctor

had the

> > > > insight to say " we're going to refer all 3 of your children

to be

> > > > evaluated for OTFT because we're starting to notice that

chiari and

> > > > OTFT often occur together " . Well, guess what! Sure enough,

all

> > THREE

> > > > of Charnel's children were found to have OTFT. All three

were

> > > > detethered and noticed at least some improvement of

symptoms. So,

> > > > now, it occurred to Charnel that SHE probably had OTFT. She

> went to

> > > > Dr. B and told him of her suspicions. At first, he was

skeptical.

> > > > BUT, being the wonderful, open minded man he is, he agreed

to

> > > > prescribe the testing she needed.

Yaddayaddayadda....Charnel was

> > > > diagnosed with OTFT as well. After this, TCI started

evaluating

> > > > people with chiari I differently and LOTS more people

(including

> > > > myself) are being found to have OTFT. End of story.....

> > > > You can search the internet for " Wehby Occult Tight

Filum

> > > > Terminale " and you will find her study.

> > > >

> > > > Keep in mind that, also recently, Dr. Royo Salvador in

Barcelona

> has

> > > > come out with a study saying OTFT is the cause of Chiari I -

> period.

> > > > This is a pretty general assumption...so, it's hard to tell

if

> it has

> > > > real merit or not yet. Who knows...maybe you can have

asymptomatic

> > > > OTFT? Or, maybe not everyone with chiari has OTFT? Or,

maybe

> > > > everyone with chairi does have OTFT? Lots of unknowns...

> > > >

> > > > Both, Dr. Wehby and Dr. Salvador say that CINE is the only

reliable

> > > > means of detecting OTFT.

> > > >

> > > > Charnel, please feel free to add/correct any mistakes I've

made

> in my

> > > > post.

> > > >

> > > >

> > >

> >

>

[Guest guest]

The endocscopic surgery can be used for fatty filum but not as often

as for tight filum. IF the lipoma in fatty filum does not appear to

be extensively tangled with nerve roots (would most likely need a

myelogram to help evaluate) or if it is a very small lipoma the

endoscopic proceedure can be used. If the lipoma needs to be

extensively resected or is adhereing to ther vertebral body it is a

toss up that usually depends on the NSG. If there is a hx of heavy

scarring with the pt can also make a difference in the way the surgery

is approached. With fatty filum that is adheared to anything other

than the filum itself there if a higher chance of retethering versus

plain tight filum.

Are they sure that the tissue going from the conus is fat? THis

sounds a bit like my daughter mackenzie and I but ours is fibrous

tissue. Machenzie had her filum cut she had a few months of relief

then grew and her problems started again. She will be having a second

open surgery to detether he conus and after her mylelogran we will

know if hse has the same problem in her thorasic spine the MRI isn't

clear. Mine were both cut the first time around so I don't anticipate

ant further detetherings.

If your daughter's incision is only to be an inch she is most likely

having the endo proceedure done. With the short hospital stay I

really don't see how they could do an open proceedure but you should

ask just in case. Because she has only the one band with no

involvement of the nerves it is also highly likely that the lap is

being done. Keep an eye on her for her next growth spurt following

surgery as she may end up needing her filum cut too. As young as your

daughter is the NSG is right in being conservate in what he is cutting.

As to her surgery. I have only one word. ZOFRAN! It is an anti

nausea med. All three of my kids woke up vommiting and the zofran was

the only thing that helped. You have no idea how awful it is to try

and keep a vommiting child flat.

Charnel

> > > > >

> > > > > ok everybody....I've gotten a few inquiries about Dr.

> Wehby

> > > and

> > > > > TCI. Asking who she is...whether there's a

> connection...etc. So,

> > > let

> > > > > me tell you a story (my facts may be slightly off...but for

> the

> > most

> > > > > part, this is fact).

> > > > > Dr. Wehby is a ns at Emmanuel's Children's Hospital in

> > > Portland

> > > > > OR. She recently published findings stating that Occult

> Tight

> > Filum

> > > > > Terminale CAN occur with the conus still appearing to end at

> the

> > > > > normal level of L1/L2 (not being pulled down lower). These

> > findings

> > > > > were (probably still are) quite controversial but alot of

> > doctors are

> > > > > starting to take notice.

> > > > > Most of you probably know Charnel (she's a member here on our

> > message

> > > > > board). Charnel was diagnosed with chiari at TCI. I don't

> > remember

> > > > > when exactly...and I don't remember whether she was

> decompressed.

> > > > > Charnel has 3 children. Sometime later (after her diagnosis

> at

> > TCI)

> > > > > she started to notice various bladder problems in her

> children (I

> > > > > think there were a few other symptoms too...maybe leg pain

> or

> > > > > headaches? I dont' remember).

> > > > > Charnel just so happens to live in Oregon. She took her

> children

> > > to a

> > > > > doctor. She told the doctor that she, herself, was

> diagnosed with

> > > > > chiari malformation. Somehow or other...because of Dr.

> Wehby's

> > well-

> > > > > known work with Occult Tight Filum Terminale...this doctor

> had the

> > > > > insight to say " we're going to refer all 3 of your children

> to be

> > > > > evaluated for OTFT because we're starting to notice that

> chiari and

> > > > > OTFT often occur together " . Well, guess what! Sure enough,

> all

> > > THREE

> > > > > of Charnel's children were found to have OTFT. All three

> were

> > > > > detethered and noticed at least some improvement of

> symptoms. So,

> > > > > now, it occurred to Charnel that SHE probably had OTFT. She

> > went to

> > > > > Dr. B and told him of her suspicions. At first, he was

> skeptical.

> > > > > BUT, being the wonderful, open minded man he is, he agreed

> to

> > > > > prescribe the testing she needed.

> Yaddayaddayadda....Charnel was

> > > > > diagnosed with OTFT as well. After this, TCI started

> evaluating

> > > > > people with chiari I differently and LOTS more people

> (including

> > > > > myself) are being found to have OTFT. End of story.....

> > > > > You can search the internet for " Wehby Occult Tight

> Filum

> > > > > Terminale " and you will find her study.

> > > > >

> > > > > Keep in mind that, also recently, Dr. Royo Salvador in

> Barcelona

> > has

> > > > > come out with a study saying OTFT is the cause of Chiari I -

> > period.

> > > > > This is a pretty general assumption...so, it's hard to tell

> if

> > it has

> > > > > real merit or not yet. Who knows...maybe you can have

> asymptomatic

> > > > > OTFT? Or, maybe not everyone with chiari has OTFT? Or,

> maybe

> > > > > everyone with chairi does have OTFT? Lots of unknowns...

> > > > >

> > > > > Both, Dr. Wehby and Dr. Salvador say that CINE is the only

> reliable

> > > > > means of detecting OTFT.

> > > > >

> > > > > Charnel, please feel free to add/correct any mistakes I've

> made

> > in my

> > > > > post.

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Charnel,

It is interesting that you say that eventually she may need her filum

to be cut as well. Our ns said that just snipping the lipoma strand

was the plan, however, if he notices that the filum is also attached

when he goes in there, he would snip that too (or take care of it).

The MRI does not show any involvement of the filum - but I guess you

can never be sure with just the MRI.

Can you have a closed procedure if you have a laminectomy? Our ns said

that he would remove 1 lamina.

I dont know if it can be fibrous tissue. The MRI showed that the

tissue inside is of the same contrast as that of other fat tissues.

Also, my daughter has a very small (almost like an insect bite) fatty

pad in her sacral area that is visible if you know where to look. That

is what prompted us to look into the matter.There seems to be no

connection between that external fat pad to the internal lipoma.

According to ns, there must have been a connection at some point of

the early fetus development.

One general question about tight filum or fatty filum surgery - do

they just cut the filum such that there is no connection of the filum

to the end - ie, filum is just free floating without being attached to

something at the end? Where do they cut it - at the base of filum or

at the base of conus (at the start of filum?). Does my question make

any sense?

This is all an effort for me to clearly understand the procedure that

my ns would do. The ns himself thinks there is no need to explain in

such detail to me - but if I dont know, I will keep wondering.

Thanks, Abby.

> > > > > >

> > > > > > ok everybody....I've gotten a few inquiries about Dr.

> > Wehby

> > > > and

> > > > > > TCI. Asking who she is...whether there's a

> > connection...etc. So,

> > > > let

> > > > > > me tell you a story (my facts may be slightly off...but for

> > the

> > > most

> > > > > > part, this is fact).

> > > > > > Dr. Wehby is a ns at Emmanuel's Children's Hospital in

> > > > Portland

> > > > > > OR. She recently published findings stating that Occult

> > Tight

> > > Filum

> > > > > > Terminale CAN occur with the conus still appearing to end at

> > the

> > > > > > normal level of L1/L2 (not being pulled down lower). These

> > > findings

> > > > > > were (probably still are) quite controversial but alot of

> > > doctors are

> > > > > > starting to take notice.

> > > > > > Most of you probably know Charnel (she's a member here on our

> > > message

> > > > > > board). Charnel was diagnosed with chiari at TCI. I don't

> > > remember

> > > > > > when exactly...and I don't remember whether she was

> > decompressed.

> > > > > > Charnel has 3 children. Sometime later (after her diagnosis

> > at

> > > TCI)

> > > > > > she started to notice various bladder problems in her

> > children (I

> > > > > > think there were a few other symptoms too...maybe leg pain

> > or

> > > > > > headaches? I dont' remember).

> > > > > > Charnel just so happens to live in Oregon. She took her

> > children

> > > > to a

> > > > > > doctor. She told the doctor that she, herself, was

> > diagnosed with

> > > > > > chiari malformation. Somehow or other...because of Dr.

> > Wehby's

> > > well-

> > > > > > known work with Occult Tight Filum Terminale...this doctor

> > had the

> > > > > > insight to say " we're going to refer all 3 of your children

> > to be

> > > > > > evaluated for OTFT because we're starting to notice that

> > chiari and

> > > > > > OTFT often occur together " . Well, guess what! Sure enough,

> > all

> > > > THREE

> > > > > > of Charnel's children were found to have OTFT. All three

> > were

> > > > > > detethered and noticed at least some improvement of

> > symptoms. So,

> > > > > > now, it occurred to Charnel that SHE probably had OTFT. She

> > > went to

> > > > > > Dr. B and told him of her suspicions. At first, he was

> > skeptical.

> > > > > > BUT, being the wonderful, open minded man he is, he agreed

> > to

> > > > > > prescribe the testing she needed.

> > Yaddayaddayadda....Charnel was

> > > > > > diagnosed with OTFT as well. After this, TCI started

> > evaluating

> > > > > > people with chiari I differently and LOTS more people

> > (including

> > > > > > myself) are being found to have OTFT. End of story.....

> > > > > > You can search the internet for " Wehby Occult Tight

> > Filum

> > > > > > Terminale " and you will find her study.

> > > > > >

> > > > > > Keep in mind that, also recently, Dr. Royo Salvador in

> > Barcelona

> > > has

> > > > > > come out with a study saying OTFT is the cause of Chiari I -

> > > period.

> > > > > > This is a pretty general assumption...so, it's hard to tell

> > if

> > > it has

> > > > > > real merit or not yet. Who knows...maybe you can have

> > asymptomatic

> > > > > > OTFT? Or, maybe not everyone with chiari has OTFT? Or,

> > maybe

> > > > > > everyone with chairi does have OTFT? Lots of unknowns...

> > > > > >

> > > > > > Both, Dr. Wehby and Dr. Salvador say that CINE is the only

> > reliable

> > > > > > means of detecting OTFT.

> > > > > >

> > > > > > Charnel, please feel free to add/correct any mistakes I've

> > made

> > > in my

> > > > > > post.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Abby,

The laminectomy has to be done to access the cord. I know the

laminecomy is limited when the lap proccedure is done but I havn't

asked how. I think it means they will only be doing it at one level

as your NSG described to you. Where they cut the filum bepends a lot

on whether there is a lipoma and the specific surgeon. The kids' were

cut between L3-L4. Thier conus' were L1-L2 and yes they are left free

floating but you have to think of it as a rubberband that retracts

itself for the most part. The fatty band will most likely be cut as

short on each side as is safe to prevent retethering.

Charnel

>

> Charnel,

>

> It is interesting that you say that eventually she may need her filum

> to be cut as well. Our ns said that just snipping the lipoma strand

> was the plan, however, if he notices that the filum is also attached

> when he goes in there, he would snip that too (or take care of it).

> The MRI does not show any involvement of the filum - but I guess you

> can never be sure with just the MRI.

>

> Can you have a closed procedure if you have a laminectomy? Our ns said

> that he would remove 1 lamina.

>

> I dont know if it can be fibrous tissue. The MRI showed that the

> tissue inside is of the same contrast as that of other fat tissues.

> Also, my daughter has a very small (almost like an insect bite) fatty

> pad in her sacral area that is visible if you know where to look. That

> is what prompted us to look into the matter.There seems to be no

> connection between that external fat pad to the internal lipoma.

> According to ns, there must have been a connection at some point of

> the early fetus development.

>

> One general question about tight filum or fatty filum surgery - do

> they just cut the filum such that there is no connection of the filum

> to the end - ie, filum is just free floating without being attached to

> something at the end? Where do they cut it - at the base of filum or

> at the base of conus (at the start of filum?). Does my question make

> any sense?

>

> This is all an effort for me to clearly understand the procedure that

> my ns would do. The ns himself thinks there is no need to explain in

> such detail to me - but if I dont know, I will keep wondering.

>

> Thanks, Abby.

>