Re: Fw: surgical proc. that removes bone from back - need feedback

[Guest guest]

A NSG we were inappropriately chatting with said he didn't see the logic in

this surgery as the scarring causes the retethering and that height is

irrelevant? That the cord will be stretched because of being tamped down by

scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

into this, Kathy. Good luck..

In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

kmoulton@... writes:

Also - Should have asked what the name of this surgery is (today at my

appt.

where they said it was *really* time to talk seriously discuss this

surgery

below) - Does anyone recall the name of this new surgical procedure (may

not

be new overall but just new for tethered spinal cord).

> Hello,

>

> I can't remember who recently had the surgery where backbone is removed,

> leaving room for the spinal cord to move more freely - fairly new

> procedure offered to tethered cord patients?

>

> If this person (Rick?) is still on the list, would you write me

privately?

> Things are getting worse pretty quickly and I need to make a decision

and

> would really appreciate talking with this person.

>

> Thank you!

>

> Kathy

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: darlene_self@... or

: hollygolightly1916@...

Yahoo! Groups Links

[Guest guest]

The one nsg I saw for discussion of this surgery said that because I've had five

untetherings that this is my only option at this point (surgically speaking).

He didn't mention the information below - but my concern right now (only

starting to really research this surgery and did find five very recent studies

if anyone is interested) is that my cord will tether to the surgical site;

causing even more tethers (is that what you are saying below?)

I will definitely let you know what I find out though.

Kathy

Re: Fw: surgical proc. that removes bone from back - need

feedback

A NSG we were inappropriately chatting with said he didn't see the logic in

this surgery as the scarring causes the retethering and that height is

irrelevant? That the cord will be stretched because of being tamped down by

scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

into this, Kathy. Good luck..

In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

kmoulton@... writes:

Also - Should have asked what the name of this surgery is (today at my

appt.

where they said it was *really* time to talk seriously discuss this

surgery

below) - Does anyone recall the name of this new surgical procedure (may

not

be new overall but just new for tethered spinal cord).

> Hello,

>

> I can't remember who recently had the surgery where backbone is removed,

> leaving room for the spinal cord to move more freely - fairly new

> procedure offered to tethered cord patients?

>

> If this person (Rick?) is still on the list, would you write me

privately?

> Things are getting worse pretty quickly and I need to make a decision

and

> would really appreciate talking with this person.

>

> Thank you!

>

> Kathy

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: darlene_self@... or

: hollygolightly1916@...

[Guest guest]

yes, Kathy..I believe that is what he was saying...of course, that is only

one NSG and at a cocktail party, at that but our girls went to the same

high school so i think he was definitely giving his honest assessment. Thanks

for the info..I know i must not be the only one who finds out what you

learn as you learn it. Did the five studies suggest it was promising or did

they all find the scarring occurred with the same rate of problems..probably

too early to tell on some of them as it is so recent that there may not be

much of a follow up time period yet? Randee

In a message dated 1/12/2011 8:43:21 P.M. Central Standard Time,

kmoulton@... writes:

The one nsg I saw for discussion of this surgery said that because I've had

five untetherings that this is my only option at this point (surgically

speaking). He didn't mention the information below - but my concern right now

(only starting to really research this surgery and did find five very

recent studies if anyone is interested) is that my cord will tether to the

surgical site; causing even more tethers (is that what you are saying below?)

I will definitely let you know what I find out though.

Kathy

----- Original Message -----

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

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Wednesday, January 12, 2011 9:33 PM

Subject: Re: Fw: surgical proc. that removes bone from back - need

feedback

A NSG we were inappropriately chatting with said he didn't see the logic

in

this surgery as the scarring causes the retethering and that height is

irrelevant? That the cord will be stretched because of being tamped down

by

scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

into this, Kathy. Good luck..

In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

Also - Should have asked what the name of this surgery is (today at my

appt.

where they said it was *really* time to talk seriously discuss this

surgery

below) - Does anyone recall the name of this new surgical procedure (may

not

be new overall but just new for tethered spinal cord).

> Hello,

>

> I can't remember who recently had the surgery where backbone is removed,

> leaving room for the spinal cord to move more freely - fairly new

> procedure offered to tethered cord patients?

>

> If this person (Rick?) is still on the list, would you write me

privately?

> Things are getting worse pretty quickly and I need to make a decision

and

> would really appreciate talking with this person.

>

> Thank you!

>

> Kathy

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: _darlene_self@..._

(mailto:darlene_self@...) or

: _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

Yahoo! Groups Links

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

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

[Guest guest]

From what I've read so far, there isn't a chance of a retethering because they

do not enter the intrathecal area/spinal cord area. They do this only at the

backbone site. However, that's what I'm taking away ...

Here are some articles, let me know if they do not come through.

http://thejns.org/action/doSearch?searchText=Posterior+vertebral+column+subtract\

ion+osteotomy%3A+a+novel+surgical+approach+for+the+treatment+of+multiple+recurre\

nces+of+tethered+cord+syndrome

Kathy

Re: Fw: surgical proc. that removes bone from back - need

feedback

A NSG we were inappropriately chatting with said he didn't see the logic

in

this surgery as the scarring causes the retethering and that height is

irrelevant? That the cord will be stretched because of being tamped down

by

scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

into this, Kathy. Good luck..

In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

Also - Should have asked what the name of this surgery is (today at my

appt.

where they said it was *really* time to talk seriously discuss this

surgery

below) - Does anyone recall the name of this new surgical procedure (may

not

be new overall but just new for tethered spinal cord).

> Hello,

>

> I can't remember who recently had the surgery where backbone is removed,

> leaving room for the spinal cord to move more freely - fairly new

> procedure offered to tethered cord patients?

>

> If this person (Rick?) is still on the list, would you write me

privately?

> Things are getting worse pretty quickly and I need to make a decision

and

> would really appreciate talking with this person.

>

> Thank you!

>

> Kathy

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: _darlene_self@..._

(mailto:darlene_self@...) or

: _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

[Guest guest]

So glad you are doing better Chip!

> Just from the sounds of it, this procedure is removing a vertebra so that it

> shortens the spinal column so it slacks the spinal cord, even if it is

> retethered. It does not cut into the dura thus not causing spinal fluid

leaking

> and additional scarring. So far, to me, it makes sense. This is an option for

> those that have had mulitple detetherings and continue to have symptoms or

> worsening symptoms. I think, the results have been more good than bad except

for

> going thru the operation stuff.

> Good luck on your decision.

> carol

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Thu, January 13, 2011 12:52:33 PM

> Subject: Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

>

> Thank you Chip - Knew it was someone from long ago (and far-away ;-) I am

> getting referred from all directions of specialists to have or at least highly

> consider this surgery. For me - it would be to help the leg pain (both), leg

> weakness that continues to worsen, and some other issues.

>

> Kathy

>

> Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

> A NSG we were inappropriately chatting with said he didn't see the logic

> in

> this surgery as the scarring causes the retethering and that height is

> irrelevant? That the cord will be stretched because of being tamped down

> by

> scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

> into this, Kathy. Good luck..

>

> In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

>

> Also - Should have asked what the name of this surgery is (today at my

> appt.

> where they said it was *really* time to talk seriously discuss this

> surgery

> below) - Does anyone recall the name of this new surgical procedure (may

> not

> be new overall but just new for tethered spinal cord).

> > Hello,

> >

> > I can't remember who recently had the surgery where backbone is removed,

> > leaving room for the spinal cord to move more freely - fairly new

> > procedure offered to tethered cord patients?

> >

> > If this person (Rick?) is still on the list, would you write me

> privately?

> > Things are getting worse pretty quickly and I need to make a decision

> and

> > would really appreciate talking with this person.

> >

> > Thank you!

> >

> > Kathy

>

> ------------------------------------

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: _darlene_self@..._

> (mailto:darlene_self@...) or

> : _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

>

[Guest guest]

Hey Chip,

How long was the surgery and how long were you in the hospital? Did your nsg

give you any hints about if a person has had symptoms that have been

long-standing (more than a year) if that lowered their chances of regaining what

is lost/going?

Are you able to bend? From the looks of the fusion, it seems you would lost a

lot of the ability to bend - but not sure.

Thanks and glad you are doing better.

Kathy

Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

> A NSG we were inappropriately chatting with said he didn't see the logic

> in

> this surgery as the scarring causes the retethering and that height is

> irrelevant? That the cord will be stretched because of being tamped down

> by

> scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

> into this, Kathy. Good luck..

>

> In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

>

> Also - Should have asked what the name of this surgery is (today at my

> appt.

> where they said it was *really* time to talk seriously discuss this

> surgery

> below) - Does anyone recall the name of this new surgical procedure (may

> not

> be new overall but just new for tethered spinal cord).

> > Hello,

> >

> > I can't remember who recently had the surgery where backbone is removed,

> > leaving room for the spinal cord to move more freely - fairly new

> > procedure offered to tethered cord patients?

> >

> > If this person (Rick?) is still on the list, would you write me

> privately?

> > Things are getting worse pretty quickly and I need to make a decision

> and

> > would really appreciate talking with this person.

> >

> > Thank you!

> >

> > Kathy

>

> ------------------------------------

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: _darlene_self@..._

> (mailto:darlene_self@...) or

> : _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

>

[Guest guest]

Kathy,

The surgery was about 8 hours long. Surprisingly, I only spent 8 days in

the hospital, and 8 days at an in-patient rehab center. As for the odds, this

surgery is just like a regular detether. The objective is to stop the

progression of symptoms. If you gain anything back, it's a bonus. With that

said, I can now report that I am starting to get a little feeling back in one

foot. When checked with a needle, I can feel something in one spot on my right

foot. I have not been able to feel anything in either foot for 21 years!!! I

know this is probably not a typical outcome, but it is VERY encouraging.

But, on the other hand, I have B/B issues that didn't develop until 9

months before the surgery, and I am yet to see improvements in this area.

Bending....I have lost some flexibility, but in reality, it's not enough to

say that it's a negative for the surgery. I have trouble doing a " full body "

stretch. You know, those ones you instinctively do in the morning after waking

up. Arching my back and flexing from side to side are also issues. But I would

personally classify these as very minor.

One other thing that I kept in mind when I was deciding if I was going to

have the surgery (and my surgeon stressed this as well), how much of my

livelihood had I lost since my new symptoms showed up. My surgeon is a

proactive doc and felt that if I have lost 50% of my lifelihood in 24 months, it

was time to really consider having the surgery. In my case, I had lost 75% of

my livelihood in 9-10 months. So it was almost a no brainer for me.

Chip

To: tetheredspinalcord

Cc:

Sent: Sunday, January 16, 2011 1:35 PM

Subject: Re: Fw: surgical proc. that removes bone from back - need

feedback

Hey Chip,

How long was the surgery and how long were you in the hospital? Did your nsg

give you any hints about if a person has had symptoms that have been

long-standing (more than a year) if that lowered their chances of regaining what

is lost/going?

Are you able to bend? From the looks of the fusion, it seems you would lost a

lot of the ability to bend - but not sure.

Thanks and glad you are doing better.

Kathy

Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

> A NSG we were inappropriately chatting with said he didn't see the logic

> in

> this surgery as the scarring causes the retethering and that height is

> irrelevant? That the cord will be stretched because of being tamped down

> by

> scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

> into this, Kathy. Good luck..

>

> In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

>

> Also - Should have asked what the name of this surgery is (today at my

> appt.

> where they said it was *really* time to talk seriously discuss this

> surgery

> below) - Does anyone recall the name of this new surgical procedure (may

> not

> be new overall but just new for tethered spinal cord).

> > Hello,

> >

> > I can't remember who recently had the surgery where backbone is removed,

> > leaving room for the spinal cord to move more freely - fairly new

> > procedure offered to tethered cord patients?

> >

> > If this person (Rick?) is still on the list, would you write me

> privately?

> > Things are getting worse pretty quickly and I need to make a decision

> and

> > would really appreciate talking with this person.

> >

> > Thank you!

> >

> > Kathy

>

> ------------------------------------

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: _darlene_self@..._

> (mailto:darlene_self@...) or

> : _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

>

[Guest guest]

Good way to help decide - I would guess I've lost close to 60-75%. I left work

for medical reasons in Sept, but in reality, it was agonizing working for about

six-eight months before I left. Besides work, I've lost function and other

neuro problems have gotten worse and new ones have started.

To be honest, I'm very scared of another surgery and not getting any positive

outcome (continuing to get worse).

Thanks Chip -

Kathy

Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

> A NSG we were inappropriately chatting with said he didn't see the logic

> in

> this surgery as the scarring causes the retethering and that height is

> irrelevant? That the cord will be stretched because of being tamped down

> by

> scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

> into this, Kathy. Good luck..

>

> In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

>

> Also - Should have asked what the name of this surgery is (today at my

> appt.

> where they said it was *really* time to talk seriously discuss this

> surgery

> below) - Does anyone recall the name of this new surgical procedure (may

> not

> be new overall but just new for tethered spinal cord).

> > Hello,

> >

> > I can't remember who recently had the surgery where backbone is removed,

> > leaving room for the spinal cord to move more freely - fairly new

> > procedure offered to tethered cord patients?

> >

> > If this person (Rick?) is still on the list, would you write me

> privately?

> > Things are getting worse pretty quickly and I need to make a decision

> and

> > would really appreciate talking with this person.

> >

> > Thank you!

> >

> > Kathy

>

> ------------------------------------

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: _darlene_self@..._

> (mailto:darlene_self@...) or

> : _hollygolightly1916@..._ (mailto:hollygolightly1916@...)

>

[Guest guest]

so glad that this is working for you.

carol

________________________________

To: tetheredspinalcord

Sent: Thu, January 13, 2011 7:12:44 PM

Subject: Re: Fw: surgical proc. that removes bone from back - need

feedback

 

Chip..this is such fabulous news! I too have wondered how you were doing.

This is just so heartening! Blessings, Randee

In a message dated 1/13/2011 8:53:06 P.M. Central Standard Time,

eatonchip@... writes:

Carol,

You are correct except there is a chance of a spinal fluid leak. The

chances are as high in this surgery as a detether.

A quick review of how I got to the point where I needed the surgery. I was

born with LMC. My first surgery to debulk was at a year old. First

detether was at age 15. Second detether was at age 27. Unfortunately, the

surgeon

that did the second surgery didn't do a very good job. At age 35, I started

showing signs of a retether. Bladder and bowl issues. Lower back pain as

well as leg pains. I had 4 surgeons look at my MRI, and none of them felt a

normal detether was a good idea. Chances for further damage was too great.

So, in June 09, I had my T12 (at least most of it) removed. This surgery

was above any of the previous surgeries. I am tethered at L3-4.

Personally, I didn't find the recovery from the surgery all that bad.

Don't get me wrong, it was and still is very long, but pain wise, I thought it

was about the same as the 2 detethers that I remember. I still have days

that I hurt pretty badly, but compared to what I was feeling seven months

ago, I'm doing great. I know that had I not gone through with the surgery, I

wouldn't be able to get out of bed today.

This is a drastic surgery, but for me thus far, it was nothing short of a

miracle.

Kathy, feel free to contact me directly if you have any questions.

Chip

Sent from my iPad

On Jan 13, 2011, at 6:59 PM, Carol Woo <_drwoo528@..._

(mailto:drwoo528@...) > wrote:

> Just from the sounds of it, this procedure is removing a vertebra so

that it

> shortens the spinal column so it slacks the spinal cord, even if it is

> retethered. It does not cut into the dura thus not causing spinal fluid

leaking

> and additional scarring. So far, to me, it makes sense. This is an

option for

> those that have had mulitple detetherings and continue to have symptoms

or

> worsening symptoms. I think, the results have been more good than bad

except for

> going thru the operation stuff.

> Good luck on your decision.

> carol

>

> ________________________________

> From: DK Moulton <_kmoulton@..._ (mailto:kmoulton@...)

>

> To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

> Sent: Thu, January 13, 2011 12:52:33 PM

> Subject: Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

>

> Thank you Chip - Knew it was someone from long ago (and far-away ;-) I

am

> getting referred from all directions of specialists to have or at least

highly

> consider this surgery. For me - it would be to help the leg pain (both),

leg

> weakness that continues to worsen, and some other issues.

>

> Kathy

>

> Re: Fw: surgical proc. that removes bone from back - need

> feedback

>

> A NSG we were inappropriately chatting with said he didn't see the logic

> in

> this surgery as the scarring causes the retethering and that height is

> irrelevant? That the cord will be stretched because of being tamped down

> by

> scarring whether one is 5'6 or 5'8...Pls share what you learn as you

look

> into this, Kathy. Good luck..

>

> In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

> __kmoulton@..._ (mailto:_kmoulton@...) _

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

>

> Also - Should have asked what the name of this surgery is (today at my

> appt.

> where they said it was *really* time to talk seriously discuss this

> surgery

> below) - Does anyone recall the name of this new surgical procedure (may

> not

> be new overall but just new for tethered spinal cord).

> > Hello,

> >

> > I can't remember who recently had the surgery where backbone is

removed,

> > leaving room for the spinal cord to move more freely - fairly new

> > procedure offered to tethered cord patients?

> >

> > If this person (Rick?) is still on the list, would you write me

> privately?

> > Things are getting worse pretty quickly and I need to make a decision

> and

> > would really appreciate talking with this person.

> >

> > Thank you!

> >

> > Kathy

>

> ------------------------------------

>

> NOT MEDICAL ADVICE. We Are Not Doctors.

> Need help with list?Email Darlene: __darlene_self@..._

(mailto:_darlene_self@...) _

> (mailto:_darlene_self@..._ (mailto:darlene_self@...) ) or

> : __hollygolightly1916@..._

(mailto:_hollygolightly1916@...) _ (mailto:_hollygolightly1916@..._

(mailto:hollygolightly1916@...) )

>

[Guest guest]

No spine surgery is simple and yes, we got to do our homework.  However, so far

from what I have learned, this option has helped when the risk to re dether is

more risky. 

________________________________

To: tetheredspinalcord

Sent: Thu, January 13, 2011 5:37:15 PM

Subject: Re: Fw: surgical proc. that removes bone from back - need

feedback

 

Wish it were that simple - have you looked at the graphics and the details of

what they place inside and do to the spine? Additionally if you read, it

discusses the possibility of instability in the future and all sorts of other

possible problems down the road. Not sure if I'd be swapping immediate problems

for future problems ... ugh.

Re: Fw: surgical proc. that removes bone from back - need

feedback

A NSG we were inappropriately chatting with said he didn't see the logic

in

this surgery as the scarring causes the retethering and that height is

irrelevant? That the cord will be stretched because of being tamped down

by

scarring whether one is 5'6 or 5'8...Pls share what you learn as you look

into this, Kathy. Good luck..

In a message dated 1/12/2011 8:05:02 P.M. Central Standard Time,

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

Also - Should have asked what the name of this surgery is (today at my

appt.

where they said it was *really* time to talk seriously discuss this

surgery

below) - Does anyone recall the name of this new surgical procedure (may

not

be new overall but just new for tethered spinal cord).

> Hello,

>

> I can't remember who recently had the surgery where backbone is removed,

> leaving room for the spinal cord to move more freely - fairly new

> procedure offered to tethered cord patients?

>

> If this person (Rick?) is still on the list, would you write me

privately?

> Things are getting worse pretty quickly and I need to make a decision

and

> would really appreciate talking with this person.

>

> Thank you!

>

> Kathy

------------------------------------

NOT MEDICAL ADVICE. We Are Not Doctors.

Need help with list?Email Darlene: _darlene_self@..._

(mailto:darlene_self@...) or

: _hollygolightly1916@..._ (mailto:hollygolightly1916@...)