new procedure for recurring tethered cord

[Guest guest]

It doesn't prevent a tethered cord nor to my knowledge is the goal to untether.

Think of a straw with a tight string inside. Now, picture a portion of the

straw cut out in the middle without touching the string inside. The string now

has a shorter covering and room to move up and down if you bend the straw. The

same theory for the spinal cord. This surgery is usually offered as a last

resort (at least in my case).

Kathy

Re: new procedure for recurring tethered cord

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]

Yes, this makes sense, from what I know, they usually reserve this surgery for

for those that had multiple surgeries and it is too risky to get another

dethether.  It does not entail entering the spinal cord opening the dura. 

It literally removes 1, 2 vertebrae thus shortening the spinal column, giving

the cord slack, reducing the tension.  The tether would still there but not as

tight/less pulling on the cord.  Less likely of 'stretching' the cord.  That's

the basic theory behind it.  I suppose, depending on where the scaring and how

much scaring there is will determine the results I would imagine.  But, if you

were to have it done, going to the person whom developed/wrote the procedure,

would be the best person to do it, I would think.  Good luck.

carol

________________________________

To: tetheredspinalcord

Sent: Mon, April 4, 2011 10:44:15 AM

Subject: 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]

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.

[Guest guest]

Thought the same thing Stacey, is why don't they offer this as a 1st line

treatment option(besides meds).  Especially for adults.  Maybe, because it is

fairly new idea and then to lose some height? But, if you don't have to open the

dura and go digging around the spinal cord?  Carol

________________________________

To: tetheredspinalcord

Sent: Tue, April 5, 2011 7:37:43 AM

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

 

this is very exciting! I am eager to read of continued follow up studies

as well as our group member experiences. Thanks so very much for the

article. I know a friend (NSG) and our daughter's NSG who have been lukewarm

about this procedure. I will forward the article in case they haven't seen

it and perhaps they will share their opinions with me..which I will, of

course, relay to the group! Randee

In a message dated 4/5/2011 9:24:28 A.M. Central Daylight Time,

kmoulton@... writes:

The paper I found: _http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070_

(http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070) states that at the time

their research was being completed, only 18 reported cases were found at

PubMed. This paper also lists the outcomes for the 18 surgeries including the

author's own experiences.

After reading this paper last night, it appears the largest risk is

performing the surgery on the older population (although they don't say what age

is " older " ) because fusion does not always become complete. This makes me a

bit nervous because my bones are soft due to age, vit. D deficiency and

hypothyroid. I'm only 49, but having five untetherings, 2 psuedomeningocele

repairs in addition to soft bones, I'm afraid I may fall into the non-fused

category.

I've written to the nsg in San Francisco that wrote the paper (the nsg

mentioned by a member) and I'm hoping to get an appt. while we are visiting CA

this year. I'd really like to get his opinion before I decide to have this

surgery.

I think the paper does briefly discuss having this surgery as a first line

of defense, but you'll have to read to confirm. I was told by my nsg that

I could lose up to 2 " of height which is no loss for me at 5'10 " . The

research I've read has said anything from a 1/4 " -1 " though. Guess it depends on

a lot of factors.

The research paper above is particularly interesting because it discusses

the downfall of untetherings and how it is fraught with potential problems

that this surgery " can " avoid.

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]

The newness and the very long, I believe, and difficult recovery? Perhaps

problems with insurance?

In a message dated 4/5/2011 7:36:56 P.M. Central Daylight Time,

drwoo528@... writes:

Thought the same thing Stacey, is why don't they offer this as a 1st line

treatment option(besides meds). Especially for adults. Maybe, because it

is

fairly new idea and then to lose some height? But, if you don't have to

open the

dura and go digging around the spinal cord? Carol

________________________________

From: " _Randeejae@..._ (mailto:Randeejae@...) "

<_Randeejae@..._ (mailto:Randeejae@...) >

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Tue, April 5, 2011 7:37:43 AM

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

this is very exciting! I am eager to read of continued follow up studies

as well as our group member experiences. Thanks so very much for the

article. I know a friend (NSG) and our daughter's NSG who have been

lukewarm

about this procedure. I will forward the article in case they haven't seen

it and perhaps they will share their opinions with me..which I will, of

course, relay to the group! Randee

In a message dated 4/5/2011 9:24:28 A.M. Central Daylight Time,

_kmoulton@..._ (mailto:kmoulton@...) writes:

The paper I found: __http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070__'>http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070__

(http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070_)

(_http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070_

(http://thejns.org/doi/pdf/10.3171/2010.4.FOCUS1070) ) states that at the time

their research was being completed, only 18 reported cases were found at

PubMed. This paper also lists the outcomes for the 18 surgeries including

the

author's own experiences.

After reading this paper last night, it appears the largest risk is

performing the surgery on the older population (although they don't say

what age

is " older " ) because fusion does not always become complete. This makes me

a

bit nervous because my bones are soft due to age, vit. D deficiency and

hypothyroid. I'm only 49, but having five untetherings, 2

psuedomeningocele

repairs in addition to soft bones, I'm afraid I may fall into the

non-fused

category.

I've written to the nsg in San Francisco that wrote the paper (the nsg

mentioned by a member) and I'm hoping to get an appt. while we are

visiting CA

this year. I'd really like to get his opinion before I decide to have this

surgery.

I think the paper does briefly discuss having this surgery as a first line

of defense, but you'll have to read to confirm. I was told by my nsg that

I could lose up to 2 " of height which is no loss for me at 5'10 " . The

research I've read has said anything from a 1/4 " -1 " though. Guess it

depends on

a lot of factors.

The research paper above is particularly interesting because it discusses

the downfall of untetherings and how it is fraught with potential problems

that this surgery " can " avoid.

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]

>

[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]

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.

> >

> >

[Guest guest]

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

________________________________

To: 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.

> >

> >

[Guest guest]

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,

There is a kind of estim belt used to help a spinal fusion take. I don't

know all the details, but shortly after my first surgery, when I was

visiting CO, I met a woman working at a shop who was wearing this rather

bulky looking belt (although nothing compared to a hard brace for scoliosis,

but more than a weight lifting belt). She said she had a fusion done and it

wasn't taking, so they had her wearing this belt that did some kind of estim

(if I'm not mistaken - it was almost 11 years ago) to help the graft take. I

tried Googling it, but the only results Google pulls are for support belts

for after a fusion.

Jenn

>

>

> Hi Chip,

>

<<SNIP>>

>

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

>

>

[Guest guest]

Are you using some of your own bone for the fusion or donated bone tissue? When

I had my fusion they used some of my own bone material. Not sure if this helped

in the process, but it was successful.

Sent via BlackBerry by AT & T

Re: Re: new procedure for recurring tethered cord

Kathy,

There is a kind of estim belt used to help a spinal fusion take. I don't

know all the details, but shortly after my first surgery, when I was

visiting CO, I met a woman working at a shop who was wearing this rather

bulky looking belt (although nothing compared to a hard brace for scoliosis,

but more than a weight lifting belt). She said she had a fusion done and it

wasn't taking, so they had her wearing this belt that did some kind of estim

(if I'm not mistaken - it was almost 11 years ago) to help the graft take. I

tried Googling it, but the only results Google pulls are for support belts

for after a fusion.

Jenn

>

>

> Hi Chip,

>

<<SNIP>>

>

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

>

>

[Guest guest]

I'm not sure if this was directed at me or Kathy. If it was to me, I didn't

have the procedure. This belt I talked about was worn by a woman I only

chatted with briefly. She didn't have the TC or the surgery we are talking

about - just a fusion. Because I had just had my back surgery, I asked her

about it and she said (I think) that it provided some kind of estim that was

to help the fusion take.

Jenn

>

>

> Are you using some of your own bone for the fusion or donated bone tissue?

> When I had my fusion they used some of my own bone material. Not sure if

> this helped in the process, but it was successful.

>

>

> Sent via BlackBerry by AT & T

>

> Re: Re: new procedure for recurring tethered cord

>

> Kathy,

>

> There is a kind of estim belt used to help a spinal fusion take. I don't

> know all the details, but shortly after my first surgery, when I was

> visiting CO, I met a woman working at a shop who was wearing this rather

> bulky looking belt (although nothing compared to a hard brace for

> scoliosis,

> but more than a weight lifting belt). She said she had a fusion done and it

>

> wasn't taking, so they had her wearing this belt that did some kind of

> estim

> (if I'm not mistaken - it was almost 11 years ago) to help the graft take.

> I

> tried Googling it, but the only results Google pulls are for support belts

> for after a fusion.

>

> Jenn

>

>

>

> >

> >

> > Hi Chip,

> >

> <<SNIP>>

> >

> 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

> >

> >

>

>

>

[Guest guest]

To Kathy.

Sent via BlackBerry by AT & T

Re: Re: new procedure for recurring tethered cord

>

> Kathy,

>

> There is a kind of estim belt used to help a spinal fusion take. I don't

> know all the details, but shortly after my first surgery, when I was

> visiting CO, I met a woman working at a shop who was wearing this rather

> bulky looking belt (although nothing compared to a hard brace for

> scoliosis,

> but more than a weight lifting belt). She said she had a fusion done and it

>

> wasn't taking, so they had her wearing this belt that did some kind of

> estim

> (if I'm not mistaken - it was almost 11 years ago) to help the graft take.

> I

> tried Googling it, but the only results Google pulls are for support belts

> for after a fusion.

>

> Jenn

>

>

>

> >

> >

> > Hi Chip,

> >

> <<SNIP>>

> >

> 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

> >

> >

>

>

>

[Guest guest]

OMG SO happy for you Chip!!  

________________________________

To: " tetheredspinalcord " <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

________________________________

To: 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.

> >

> >

[Guest guest]

I've thought about this - I had one years ago after a diagnosis of Grave's

disease. At that time all was fine, but obviously things are not the same

now. I'll discuss with my family doctor - 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.

>> > >

>> > >