Re: new procedure for recurring tethered cord

[Guest guest]

How does this prevent the issues with Tethered Cord? Since alot of us,

especially after a Detethering, are Tethered by Scar Tissue........I just

don't see how this prevents that. Ok, I see that you said they mentioned the

Tether will always be there........so how does this work?

I'll keep this post so I can look up more info when I have time.

Brande

mymocha@...

He has now found a new procedure that involves removing 2 vertebraes that

removes all the pressure off the nerves. I am having problems with bowel &

bladder incontinence & severe pain inright leg. They say that with the

surgery the tether will always be there but all my problems will be

resolved. The surgery is called a verrtebral column subtraction osteotomy.

There are no surgeons who perform this procedure here in Alabama. He wants

to send me to USC medical center in California. The doctor there wrote the

procedure. His name is C. Hsieh. Has anyone heard of this surgery. I

have read what little info is out there & read the docs bio, he is very

impressive. Now its trying to get insurance to pay for the trip & surgery.

wish me luck.

[Guest guest]

good luck and keep us posted. Hopefully, the other member who had this

done in Calif but by a different surgeon will update us on how he is doing.

I guess the theory is that by shortening, the cord is not being stretched?

Randee

In a message dated 4/4/2011 12:40:21 P.M. Central Daylight Time,

mymocha@... writes:

How does this prevent the issues with Tethered Cord? Since alot of us,

especially after a Detethering, are Tethered by Scar Tissue........I just

don't see how this prevents that. Ok, I see that you said they mentioned

the

Tether will always be there........so how does this work?

I'll keep this post so I can look up more info when I have time.

Brande

_mymocha@..._ (mailto:mymocha@...)

He has now found a new procedure that involves removing 2 vertebraes that

removes all the pressure off the nerves. I am having problems with bowel &

bladder incontinence & severe pain inright leg. They say that with the

surgery the tether will always be there but all my problems will be

resolved. The surgery is called a verrtebral column subtraction osteotomy.

There are no surgeons who perform this procedure here in Alabama. He wants

to send me to USC medical center in California. The doctor there wrote the

procedure. His name is C. Hsieh. Has anyone heard of this surgery.

I

have read what little info is out there & read the docs bio, he is very

impressive. Now its trying to get insurance to pay for the trip & surgery.

wish me luck.

[Guest guest]

Chip!!! Ditto to 's comment below! Randee

In a message dated 4/7/2011 11:54:09 P.M. Central Daylight Time,

livedream_believe@... writes:

OMG SO happy for you Chip!!

________________________________

From: Chip Eaton <_eatonchip@..._ (mailto:eatonchip@...) >

To: " _tetheredspinalcord _

(mailto:tetheredspinalcord ) "

<_tetheredspinalcord _

(mailto:tetheredspinalcord ) >

Sent: Thu, April 7, 2011 11:56:26 AM

Subject: Re: Re: new procedure for recurring tethered cord

Hi All,

I had this surgery done by Dr. Chi at Brigham and Women Hospital in

Boston in June 2010. It was nothing short of a miracle for me. Before

the

surgery, I was just about bed ridden. I was in constant pain, couldn't

hardly

stand, walk or sit. Now, I can sit without a problem, stand almost as

long as I

want, and have gotten a vast majority of my life back.

The Dr took 1 1/2 inch from my spinal column. They removed one whole disk

and 80% of my T12. I have rods on either side of my spinal column from

T10 to

L2. This is all above my tether (L3-4). I had 3 surgeries prior to this

one,

and it created so much scar tissue that no doc was conformable doing a

detether. I personally went to 2, and Dr. Chi consulted with about 5

other

surgeons.

Now that I have had the surgery done, people tell me that they have no

idea

that I have had it done. I have my limitations, but I am MUCH better than

I was

one year ago.

If you would like more details please feel free to contact me. I will

tell

you as much as I can.

Thanks

Chip

________________________________

From: stacey1149 <_jslapointe@..._ (mailto:jslapointe@...)

>

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Wednesday, April 6, 2011 10:37 AM

Subject: Re: new procedure for recurring tethered cord

Thank you, Kathy. : )

I'd like to take my time and really go through this article, so I may have

some

more questions/comments later, but I'm wondering what kind of doctor Dr.

Hsieh

is? I'm guessing NS, but would an orthopedic doctor actually remove the

bones?

I'm not familiar with 'fusing' at all. Would that mean that the bones need

to

fuse together after the surgery? Or does the doctor fuse them somehow?

Good luck, Kathy. I hope you can get in to see the doctor for an opinion!

Stacey

mom to Sofia age 5, VACTERL

> >

> > If you get your insurance company to pay for the trip - would you

write me?

>This surgery was recommended to me and I haven't made a decision (had

five

>untetherings so I'm over-done with that procedure). I see another nsg for

a

>second opinion in May.

> >

> > Please keep me in mind after you receive an answer from your ins.

company. I

>have never heard of insurance paying for travel, but if they do - wow!

> >

> > Thanks.

> >

> > Kathy

> >

> > Re: new procedure for recurring tethered cord

> >

> >

> > good luck and keep us posted. Hopefully, the other member who had this

> > done in Calif but by a different surgeon will update us on how he is

doing.

> > I guess the theory is that by shortening, the cord is not being

stretched?

> > Randee

> >

> > In a message dated 4/4/2011 12:40:21 P.M. Central Daylight Time,

> > mymocha@ writes:

> >

> > How does this prevent the issues with Tethered Cord? Since alot of us,

> > especially after a Detethering, are Tethered by Scar Tissue........I

just

> > don't see how this prevents that. Ok, I see that you said they

mentioned

> > the

> > Tether will always be there........so how does this work?

> >

> > I'll keep this post so I can look up more info when I have time.

> >

> > Brande

> > _mymocha@_ (mailto:mymocha@)

> >

> > He has now found a new procedure that involves removing 2 vertebraes

that

> > removes all the pressure off the nerves. I am having problems with

bowel &

> > bladder incontinence & severe pain inright leg. They say that with the

> > surgery the tether will always be there but all my problems will be

> > resolved. The surgery is called a verrtebral column subtraction

osteotomy.

> > There are no surgeons who perform this procedure here in Alabama. He

wants

> > to send me to USC medical center in California. The doctor there wrote

the

> > procedure. His name is C. Hsieh. Has anyone heard of this

surgery.

> > I

> > have read what little info is out there & read the docs bio, he is

very

> > impressive. Now its trying to get insurance to pay for the trip &

surgery.

> > wish me luck.

> >

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

> >

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

> >

> >

> >

> >

> >

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

> >

>

>

>

>

>

>

[Guest guest]

Kathy,

     The majority of the " new " symptoms started in Oct09.  The first being

bladder function.  I couldn't void my bladder and started cathing.  Shortly

there after, the pain in my legs started (mid Dec maybe), and in early Feb my

lower back and feet started to hurt (Funny thing about my feet hurting isI have

had zero sensory perception from the knees down since 1990, but complete motor

function) .  Mid Feb I started having a feeling like I was sitting on a

softball.  So everything when to h*** in a 5-6 month time frame; I went from

active, to almost bed ridden.

     There was no mention of the fusion not taking.  Maybe because other

that the symptoms of the tethered cord, I am healthy.  My nsg checked the

fusion status using just x-rays.

    

Chip

 

________________________________

To: tetheredspinalcord

Sent: Thursday, April 7, 2011 1:17 PM

Subject: Re: Re: new procedure for recurring tethered cord

 

Hi Chip,

Can't recall if I've asked this before and my main computer is in the other room

(and I'm couch-bound for two days), so please excuse if a repeat.

How long did you experience symptoms before this last surgery? I know this is

my last resort and I'm trying so hard to balance care with the choice I make and

the need to do all I can to preserve and have function return (and some pain

relief would be a wonderful bonus).

Did any nsg mention what they would do if the bone did not fuse properly and/or

how they would check to assure that it fused? The last paper I read had some

precautions that I hadn't heard of before which has put me back on the fence. I

know I can't keep sitting on this decision though - it's sh** or get off the pot

time for me once I see a second opinion nsg (and hopefully Dr. Heisch in CA).

Thanks and thanks again for sharing your experience.

Kathy

Re: new procedure for recurring tethered cord

> >

> >

> > good luck and keep us posted. Hopefully, the other member who had this

> > done in Calif but by a different surgeon will update us on how he is doing.

> > I guess the theory is that by shortening, the cord is not being stretched?

> > Randee

> >

> > In a message dated 4/4/2011 12:40:21 P.M. Central Daylight Time,

> > mymocha@ writes:

> >

> > How does this prevent the issues with Tethered Cord? Since alot of us,

> > especially after a Detethering, are Tethered by Scar Tissue........I just

> > don't see how this prevents that. Ok, I see that you said they mentioned

> > the

> > Tether will always be there........so how does this work?

> >

> > I'll keep this post so I can look up more info when I have time.

> >

> > Brande

> > _mymocha@_ (mailto:mymocha@)

> >

> > He has now found a new procedure that involves removing 2 vertebraes that

> > removes all the pressure off the nerves. I am having problems with bowel &

> > bladder incontinence & severe pain inright leg. They say that with the

> > surgery the tether will always be there but all my problems will be

> > resolved. The surgery is called a verrtebral column subtraction osteotomy.

> > There are no surgeons who perform this procedure here in Alabama. He wants

> > to send me to USC medical center in California. The doctor there wrote the

> > procedure. His name is C. Hsieh. Has anyone heard of this surgery.

> > I

> > have read what little info is out there & read the docs bio, he is very

> > impressive. Now its trying to get insurance to pay for the trip & surgery.

> > wish me luck.

> >

> >

[Guest guest]

Kathy,

If you are concerned about bone density and the fusion taking (or being able

to insert rods/screws w/o the bone crumbling) maybe a bone density scan

would be in order. That may also help you decide if the surgery would be a

good idea?

Jenn

>

>

> Kathy,

> The majority of the " new " symptoms started in Oct09. The first being

> bladder function. I couldn't void my bladder and started cathing. Shortly

> there after, the pain in my legs started (mid Dec maybe), and in early Feb

> my lower back and feet started to hurt (Funny thing about my feet hurting

> isI have had zero sensory perception from the knees down since 1990, but

> complete motor function) . Mid Feb I started having a feeling like I was

> sitting on a softball. So everything when to h*** in a 5-6 month time

> frame; I went from active, to almost bed ridden.

> There was no mention of the fusion not taking. Maybe because other

> that the symptoms of the tethered cord, I am healthy. My nsg checked the

> fusion status using just x-rays.

>

>

> Chip

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Thursday, April 7, 2011 1:17 PM

> Subject: Re: Re: new procedure for recurring tethered cord

>

>

> Hi Chip,

>

> Can't recall if I've asked this before and my main computer is in the other

> room (and I'm couch-bound for two days), so please excuse if a repeat.

>

> How long did you experience symptoms before this last surgery? I know this

> is my last resort and I'm trying so hard to balance care with the choice I

> make and the need to do all I can to preserve and have function return (and

> some pain relief would be a wonderful bonus).

>

> Did any nsg mention what they would do if the bone did not fuse properly

> and/or how they would check to assure that it fused? The last paper I read

> had some precautions that I hadn't heard of before which has put me back on

> the fence. I know I can't keep sitting on this decision though - it's sh**

> or get off the pot time for me once I see a second opinion nsg (and

> hopefully Dr. Heisch in CA).

>

> Thanks and thanks again for sharing your experience.

>

> Kathy

>

> Re: new procedure for recurring tethered cord

> > >

> > >

> > > good luck and keep us posted. Hopefully, the other member who had this

> > > done in Calif but by a different surgeon will update us on how he is

> doing.

> > > I guess the theory is that by shortening, the cord is not being

> stretched?

> > > Randee

> > >

> > > In a message dated 4/4/2011 12:40:21 P.M. Central Daylight Time,

> > > mymocha@ writes:

> > >

> > > How does this prevent the issues with Tethered Cord? Since alot of us,

> > > especially after a Detethering, are Tethered by Scar Tissue........I

> just

> > > don't see how this prevents that. Ok, I see that you said they

> mentioned

> > > the

> > > Tether will always be there........so how does this work?

> > >

> > > I'll keep this post so I can look up more info when I have time.

> > >

> > > Brande

> > > _mymocha@_ (mailto:mymocha@)

> > >

> > > He has now found a new procedure that involves removing 2 vertebraes

> that

> > > removes all the pressure off the nerves. I am having problems with

> bowel &

> > > bladder incontinence & severe pain inright leg. They say that with the

> > > surgery the tether will always be there but all my problems will be

> > > resolved. The surgery is called a verrtebral column subtraction

> osteotomy.

> > > There are no surgeons who perform this procedure here in Alabama. He

> wants

> > > to send me to USC medical center in California. The doctor there wrote

> the

> > > procedure. His name is C. Hsieh. Has anyone heard of this

> surgery.

> > > I

> > > have read what little info is out there & read the docs bio, he is very

>

> > > impressive. Now its trying to get insurance to pay for the trip &

> surgery.

> > > wish me luck.

> > >

> > >