Re: Is detethering worth it ?

[Guest guest]

I would say that the detethering surgery was the correct choice for me. I had

the surgery in April '06 and have had a lot of relief from my symptoms. Prior

to the surgery, I had numbness in my legs, genitals, and tail bone. I also had

a lot of pain in my low back and legs (hips and knees). The numbness has gone

away completely. I only experience low back pain every once in a while. I

still have a lot of pain in my knees and hips, however, Dr. M has determined

that these are from conditions aside from tsc; eds causes the knee pain and

something else (don't recall the nane) causes the hip pain. I would say that

the surgery was a great option/success for me. I had the surgery because I did

not want my numbness to turn to full-fledged paralysis, which can occur if the

issue is not corrected. Hope this helps.

-Sheena

Laminectomy and Cord Untethering Apr 4, 2006

Decompression and CCFusion Jun 21, 2005

blessedwithmojo wrote:

I'm still trying to figure it all out, but my biggest question / fear

is - is detethering worth it ? I took Dr B's words to be that he could

dethether me and end my low back pain and all my waist down symptoms.

By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE

this sites honesty and forthcoming, wouldn't be here if it wasn't that

way, please don't ever change, lol ) I understand scar tissure growing

back and the need for more detethering down the road, but is it just me

or does it seem that its a bit more complicated then just scar tissue

regrowth.

Is it also that MRI's only show so much and once a surgeon gets in there

they find more wrong so more work is done possibly causing more

recovery, ect ?

Still having a hard time getting what I want out of my head onto the

screen so hopefully my questions clear. Do you think detethering has

been worth doing ? Should someone wait as long as possible before doing

it ? Or go as soon as possible ? Looking for opinions from those who

have been there before me. Thanks everyone :-).

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

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

You have most definitely raised a good topic!! In my experiences and

opinions..I would have to say that surgery is a good sollution depending on your

symptoms and reasons for having the surgery. Once you have the surgey...You are

more than likely going to retether at some point again in your life. For some

it takes months for others it can take years. So I feel like you should wait

until you are really loosing function of your legs. By this I mean that walking

is becoming almost impossible. I only mean this for ADULTS. In Children I feel

like they should have it done as soon as possible to prevent further nerve

damage.

My first detethering went very well, and I was glad at the time that I had it

done. But all my symptoms came back bacause I retethered due to scar tissue.

So I had a second surgery. Unfortunately for me, things were worse after the

surgery, compared to what I was like before I had it done. So I do regret the

second surgery. If I had it to do all over again.....I would have waited before

I had the very first surgery. I thought that my symptoms at the time were

pretty bad before the first....but knowing what I know now....they werent sooo

bad. I could have lived with them and waited till they got worse. So in my

opinon I am totally against multiple surgeries, unless it is life or death

situations.

To Sum things up....If your having the surgery because of...

1. Pain...DONT DO IT

2. Bladder or Bowel control...DONT DO IT

3. you can barely walk...THEN DO IT!!

This is only my opinion though..and I did notice reading the other

replies..the ones that think surgery is worth it..was the ones that recently

have had it done..I cant help but wonder in a few years will they think the same

thing. So that is something else you might want to take into consideration.

Love and Prayers to All,

Christy

blessedwithmojo wrote:

I'm still trying to figure it all out, but my biggest question / fear

is - is detethering worth it ? I took Dr B's words to be that he could

dethether me and end my low back pain and all my waist down symptoms.

By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE

this sites honesty and forthcoming, wouldn't be here if it wasn't that

way, please don't ever change, lol ) I understand scar tissure growing

back and the need for more detethering down the road, but is it just me

or does it seem that its a bit more complicated then just scar tissue

regrowth.

Is it also that MRI's only show so much and once a surgeon gets in there

they find more wrong so more work is done possibly causing more

recovery, ect ?

Still having a hard time getting what I want out of my head onto the

screen so hopefully my questions clear. Do you think detethering has

been worth doing ? Should someone wait as long as possible before doing

it ? Or go as soon as possible ? Looking for opinions from those who

have been there before me. Thanks everyone :-).

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

Yahoo! Music Unlimited - Access over 1 million songs.Try it free.

[Guest guest]

I feel I must reply to the " sum things up " in this email and say that this

summing up is very stark and in most cases, not the right way to

contemplate detethering surgery.

The argument not to have the detethering due to pain is, I feel, an

erroneous one. Pain can compromise one's life activities, enjoyment,

interaction at work, home, keeping fit etc etc. Pain is also an indication

that something is wrong, and that some damage is being done to the body.

I had my detethering when my pain was approximately 7.5/10 every day. It

progressed some days to 9.5/10 and other days regressed to approx 2/10.

Despite the good days, my neurosurgeon said I *had* to have the detethering

to save my good nerves and function. Any reduction in pain would be a bonus

- and indeed that is how it turned out.

Being cynical, if anyone can live with pain, and turn down the opportunity

to have a reduction in that pain, then they are possibly turning down

prospects of a better outcome in that surgery.

BTW: I had my detethering 5 years ago on 31st July. I have ended up with

erythromelalgia, complex regional pain syndrome and facet joint erosion in

my back - but I would not have missed having the surgery. It gave me my

life back, albeit with some restrictions, but by now I would have been in a

wheelchair permanently, would have lost control of bowel and bladder, and

would have been thoroughly miserable.

The decision is of course very individualised, but overall, having a

detethering is worth it. It is not a good thing to say " what if I

retether " . No-one has a crystal ball to see 5 years down the line. " What if

I *don't* retether " - that's got to be a good thing

Regards

Nina

Bristol, UK

--

> You have most definitely raised a good topic!! In my experiences and

> opinions..I would have to say that surgery is a good sollution depending

> on your symptoms and reasons for having the surgery. Once you have the

> surgey...You are more than likely going to retether at some point again

> in your life. For some it takes months for others it can take years. So

> I feel like you should wait until you are really loosing function of your

> legs. By this I mean that walking is becoming almost impossible. I only

> mean this for ADULTS. In Children I feel like they should have it done

> as soon as possible to prevent further nerve damage.

> My first detethering went very well, and I was glad at the time that I

> had it done. But all my symptoms came back bacause I retethered due to

> scar tissue. So I had a second surgery. Unfortunately for me, things

> were worse after the surgery, compared to what I was like before I had it

> done. So I do regret the second surgery. If I had it to do all over

> again.....I would have waited before I had the very first surgery. I

> thought that my symptoms at the time were pretty bad before the

> first....but knowing what I know now....they werent sooo bad. I could

> have lived with them and waited till they got worse. So in my opinon I

> am totally against multiple surgeries, unless it is life or death

> situations.

> To Sum things up....If your having the surgery because of...

> 1. Pain...DONT DO IT

> 2. Bladder or Bowel control...DONT DO IT

> 3. you can barely walk...THEN DO IT!!

>

> This is only my opinion though..and I did notice reading the other

> replies..the ones that think surgery is worth it..was the ones that

> recently have had it done..I cant help but wonder in a few years will

> they think the same thing. So that is something else you might want to

> take into consideration.

> Love and Prayers to All,

> Christy

>

> blessedwithmojo wrote:

>

> I'm still trying to figure it all out, but my biggest question / fear

> is - is detethering worth it ? I took Dr B's words to be that he could

> dethether me and end my low back pain and all my waist down symptoms.

>

> By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE

> this sites honesty and forthcoming, wouldn't be here if it wasn't that

> way, please don't ever change, lol ) I understand scar tissure growing

> back and the need for more detethering down the road, but is it just me

> or does it seem that its a bit more complicated then just scar tissue

> regrowth.

>

> Is it also that MRI's only show so much and once a surgeon gets in there

> they find more wrong so more work is done possibly causing more

> recovery, ect ?

>

> Still having a hard time getting what I want out of my head onto the

> screen so hopefully my questions clear. Do you think detethering has

> been worth doing ? Should someone wait as long as possible before doing

> it ? Or go as soon as possible ? Looking for opinions from those who

> have been there before me. Thanks everyone :-).

>

>

>

>

>

>

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

> Yahoo! Music Unlimited - Access over 1 million songs.Try it free.

>

>

[Guest guest]

All of it is all true, which is confusing because we

have a rare disorder with a wildly varied outcome.

This will give you a lot of different feedback when

you look to the one in one thousand, which is us at

large then the one in 5 who have a symptomatic

retether following that. That's not even considering

the many variations of tethered cord and how/why it's

tethered.

I agonized over the decision. The only thing i can

say about it overall is, if you choose to go forward

with a first detether, find the best doctor. That's

because the second or third detether is much more

complicated.

This is a huge faith to place in a human being so I

just researched it til I was blue in the face then

went for it. I asked a lot here and then asked a lot

from anyone else who would know. I read medical

papers and asked medical evaluators even. Don't be

afraid to insist on what you need. That's the biggest

thing overall I think in any healthcare situation.

I have similar pain and similar symptoms but unlike

Nina, have less time to account for since I had

surgery 3 months ago. Therefore I find comfort in

hearing that she doesn't regret it. She has more

history. It's so far a net positive and no regrets

for having the surgery. So far, I'm better off. I

can do more after 3 months than I could before. I

cant feel my foot and I have pain but today I played

tennis. I didn't dodge for tough shots but I was able

to get some footwork that I couldn't before. I was so

happy I almost cried. I can do a lot more than

before.

Perhaps we should get together and write a casebook

for everyone. Nina's diary was the only reference I

had for a long term adult case story which was

immensely helpful, as was everyone's individual

advice. Why don't we do this on a larger scale?

Sincerely,

--- " AB Bunton, Electrical & Electronic Engineering "

wrote:

> I feel I must reply to the " sum things up " in this

> email and say that this

> summing up is very stark and in most cases, not the

> right way to

> contemplate detethering surgery.

>

> The argument not to have the detethering due to pain

> is, I feel, an

> erroneous one. Pain can compromise one's life

> activities, enjoyment,

> interaction at work, home, keeping fit etc etc. Pain

> is also an indication

> that something is wrong, and that some damage is

> being done to the body.

>

> I had my detethering when my pain was approximately

> 7.5/10 every day. It

> progressed some days to 9.5/10 and other days

> regressed to approx 2/10.

> Despite the good days, my neurosurgeon said I *had*

> to have the detethering

> to save my good nerves and function. Any reduction

> in pain would be a bonus

> - and indeed that is how it turned out.

>

> Being cynical, if anyone can live with pain, and

> turn down the opportunity

> to have a reduction in that pain, then they are

> possibly turning down

> prospects of a better outcome in that surgery.

>

> BTW: I had my detethering 5 years ago on 31st July.

> I have ended up with

> erythromelalgia, complex regional pain syndrome and

> facet joint erosion in

> my back - but I would not have missed having the

> surgery. It gave me my

> life back, albeit with some restrictions, but by now

> I would have been in a

> wheelchair permanently, would have lost control of

> bowel and bladder, and

> would have been thoroughly miserable.

>

> The decision is of course very individualised, but

> overall, having a

> detethering is worth it. It is not a good thing to

> say " what if I

> retether " . No-one has a crystal ball to see 5 years

> down the line. " What if

> I *don't* retether " - that's got to be a good thing

>

> Regards

>

> Nina

> Bristol, UK

>

>

> --On 07 July 2006 11:33 -0700 christy hylton

> wrote:

>

> > You have most definitely raised a good topic!! In

> my experiences and

> > opinions..I would have to say that surgery is a

> good sollution depending

> > on your symptoms and reasons for having the

> surgery. Once you have the

> > surgey...You are more than likely going to

> retether at some point again

> > in your life. For some it takes months for others

> it can take years. So

> > I feel like you should wait until you are really

> loosing function of your

> > legs. By this I mean that walking is becoming

> almost impossible. I only

> > mean this for ADULTS. In Children I feel like

> they should have it done

> > as soon as possible to prevent further nerve

> damage.

> > My first detethering went very well, and I was

> glad at the time that I

> > had it done. But all my symptoms came back

> bacause I retethered due to

> > scar tissue. So I had a second surgery.

> Unfortunately for me, things

> > were worse after the surgery, compared to what I

> was like before I had it

> > done. So I do regret the second surgery. If I

> had it to do all over

> > again.....I would have waited before I had the

> very first surgery. I

> > thought that my symptoms at the time were pretty

> bad before the

> > first....but knowing what I know now....they

> werent sooo bad. I could

> > have lived with them and waited till they got

> worse. So in my opinon I

> > am totally against multiple surgeries, unless it

> is life or death

> > situations.

> > To Sum things up....If your having the surgery

> because of...

> > 1. Pain...DONT DO IT

> > 2. Bladder or Bowel control...DONT DO IT

> > 3. you can barely walk...THEN DO IT!!

> >

> > This is only my opinion though..and I did notice

> reading the other

> > replies..the ones that think surgery is worth

> it..was the ones that

> > recently have had it done..I cant help but wonder

> in a few years will

> > they think the same thing. So that is something

> else you might want to

> > take into consideration.

> > Love and Prayers to All,

> > Christy

> >

> > blessedwithmojo wrote:

> >

> > I'm still trying to figure it all out, but my

> biggest question / fear

> > is - is detethering worth it ? I took Dr B's words

> to be that he could

> > dethether me and end my low back pain and all my

> waist down symptoms.

> >

> > By reading these posts I'm not so sure.( Don't get

> me wrong guys, I LOVE

> > this sites honesty and forthcoming, wouldn't be

> here if it wasn't that

> > way, please don't ever change, lol ) I understand

> scar tissure growing

> > back and the need for more detethering down the

> road, but is it just me

> > or does it seem that its a bit more complicated

> then just scar tissue

> > regrowth.

> >

> > Is it also that MRI's only show so much and once a

> surgeon gets in there

> > they find more wrong so more work is done possibly

> causing more

> > recovery, ect ?

> >

> > Still having a hard time getting what I want out

> of my head onto the

> > screen so hopefully my questions clear. Do you

> think detethering has

> > been worth doing ? Should someone wait as long as

> possible before doing

> > it ? Or go as soon as possible ? Looking for

> opinions from those who

> > have been there before me. Thanks everyone :-).

> >

> >

> >

> >

> >

> >

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

> > Yahoo! Music Unlimited - Access over 1 million

> songs.Try it free.

> >

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

> removed]

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> > kathy@...,michelle@...,

> rick@...

> >

[Guest guest]

Hi All,

I have to add just one thing to this - I was surprised to read that because

some of us have only been a few months out of surgery and in the long term may

regret it as pain may return due to retethering that I may be walking on clouds

or such. . . .

I didn't just have detethering to reduce my pain level and be able to work and

spend time w/my family outside of my bed but rather to help prevent further

nerve damage that was ocurring and would become permanent had I not taken

action.

I guess we have to decide as if it's the same as something wrong w/your heart

or other life-sustaining organ. . . your spinal cord is so important to your

life it amazes me that people seem to think that one is right or wrong or should

be regrettful in trying to fix the problem.

My advice is that it's a personal decision but find the best doctor to perform

it on you through your own research and talking to others.

That's just my 2 cents worth - even after a bad pain Sunday.

Wyoming

Decompressed May 02

Detethered Apr 06

stella o wrote:

All of it is all true, which is confusing because we

have a rare disorder with a wildly varied outcome.

This will give you a lot of different feedback when

you look to the one in one thousand, which is us at

large then the one in 5 who have a symptomatic

retether following that. That's not even considering

the many variations of tethered cord and how/why it's

tethered.

I agonized over the decision. The only thing i can

say about it overall is, if you choose to go forward

with a first detether, find the best doctor. That's

because the second or third detether is much more

complicated.

This is a huge faith to place in a human being so I

just researched it til I was blue in the face then

went for it. I asked a lot here and then asked a lot

from anyone else who would know. I read medical

papers and asked medical evaluators even. Don't be

afraid to insist on what you need. That's the biggest

thing overall I think in any healthcare situation.

I have similar pain and similar symptoms but unlike

Nina, have less time to account for since I had

surgery 3 months ago. Therefore I find comfort in

hearing that she doesn't regret it. She has more

history. It's so far a net positive and no regrets

for having the surgery. So far, I'm better off. I

can do more after 3 months than I could before. I

cant feel my foot and I have pain but today I played

tennis. I didn't dodge for tough shots but I was able

to get some footwork that I couldn't before. I was so

happy I almost cried. I can do a lot more than

before.

Perhaps we should get together and write a casebook

for everyone. Nina's diary was the only reference I

had for a long term adult case story which was

immensely helpful, as was everyone's individual

advice. Why don't we do this on a larger scale?

Sincerely,

--- " AB Bunton, Electrical & Electronic Engineering "

wrote:

> I feel I must reply to the " sum things up " in this

> email and say that this

> summing up is very stark and in most cases, not the

> right way to

> contemplate detethering surgery.

>

> The argument not to have the detethering due to pain

> is, I feel, an

> erroneous one. Pain can compromise one's life

> activities, enjoyment,

> interaction at work, home, keeping fit etc etc. Pain

> is also an indication

> that something is wrong, and that some damage is

> being done to the body.

>

> I had my detethering when my pain was approximately

> 7.5/10 every day. It

> progressed some days to 9.5/10 and other days

> regressed to approx 2/10.

> Despite the good days, my neurosurgeon said I *had*

> to have the detethering

> to save my good nerves and function. Any reduction

> in pain would be a bonus

> - and indeed that is how it turned out.

>

> Being cynical, if anyone can live with pain, and

> turn down the opportunity

> to have a reduction in that pain, then they are

> possibly turning down

> prospects of a better outcome in that surgery.

>

> BTW: I had my detethering 5 years ago on 31st July.

> I have ended up with

> erythromelalgia, complex regional pain syndrome and

> facet joint erosion in

> my back - but I would not have missed having the

> surgery. It gave me my

> life back, albeit with some restrictions, but by now

> I would have been in a

> wheelchair permanently, would have lost control of

> bowel and bladder, and

> would have been thoroughly miserable.

>

> The decision is of course very individualised, but

> overall, having a

> detethering is worth it. It is not a good thing to

> say " what if I

> retether " . No-one has a crystal ball to see 5 years

> down the line. " What if

> I *don't* retether " - that's got to be a good thing

>

> Regards

>

> Nina

> Bristol, UK

>

>

> --On 07 July 2006 11:33 -0700 christy hylton

> wrote:

>

> > You have most definitely raised a good topic!! In

> my experiences and

> > opinions..I would have to say that surgery is a

> good sollution depending

> > on your symptoms and reasons for having the

> surgery. Once you have the

> > surgey...You are more than likely going to

> retether at some point again

> > in your life. For some it takes months for others

> it can take years. So

> > I feel like you should wait until you are really

> loosing function of your

> > legs. By this I mean that walking is becoming

> almost impossible. I only

> > mean this for ADULTS. In Children I feel like

> they should have it done

> > as soon as possible to prevent further nerve

> damage.

> > My first detethering went very well, and I was

> glad at the time that I

> > had it done. But all my symptoms came back

> bacause I retethered due to

> > scar tissue. So I had a second surgery.

> Unfortunately for me, things

> > were worse after the surgery, compared to what I

> was like before I had it

> > done. So I do regret the second surgery. If I

> had it to do all over

> > again.....I would have waited before I had the

> very first surgery. I

> > thought that my symptoms at the time were pretty

> bad before the

> > first....but knowing what I know now....they

> werent sooo bad. I could

> > have lived with them and waited till they got

> worse. So in my opinon I

> > am totally against multiple surgeries, unless it

> is life or death

> > situations.

> > To Sum things up....If your having the surgery

> because of...

> > 1. Pain...DONT DO IT

> > 2. Bladder or Bowel control...DONT DO IT

> > 3. you can barely walk...THEN DO IT!!

> >

> > This is only my opinion though..and I did notice

> reading the other

> > replies..the ones that think surgery is worth

> it..was the ones that

> > recently have had it done..I cant help but wonder

> in a few years will

> > they think the same thing. So that is something

> else you might want to

> > take into consideration.

> > Love and Prayers to All,

> > Christy

> >

> > blessedwithmojo wrote:

> >

> > I'm still trying to figure it all out, but my

> biggest question / fear

> > is - is detethering worth it ? I took Dr B's words

> to be that he could

> > dethether me and end my low back pain and all my

> waist down symptoms.

> >

> > By reading these posts I'm not so sure.( Don't get

> me wrong guys, I LOVE

> > this sites honesty and forthcoming, wouldn't be

> here if it wasn't that

> > way, please don't ever change, lol ) I understand

> scar tissure growing

> > back and the need for more detethering down the

> road, but is it just me

> > or does it seem that its a bit more complicated

> then just scar tissue

> > regrowth.

> >

> > Is it also that MRI's only show so much and once a

> surgeon gets in there

> > they find more wrong so more work is done possibly

> causing more

> > recovery, ect ?

> >

> > Still having a hard time getting what I want out

> of my head onto the

> > screen so hopefully my questions clear. Do you

> think detethering has

> > been worth doing ? Should someone wait as long as

> possible before doing

> > it ? Or go as soon as possible ? Looking for

> opinions from those who

> > have been there before me. Thanks everyone :-).

> >

> >

> >

> >

> >

> >

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

> > Yahoo! Music Unlimited - Access over 1 million

> songs.Try it free.

> >

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

> removed]

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> > kathy@...,michelle@...,

> rick@...

> >

[Guest guest]

I think 's suggestion of a casebook of everyone's medical history's (all

those of course that want to participate) is an excellent idea. I searched high

and low to find information on this. And again with exception to Nina's diary

(which I was thankful for) there isn't much out there.

Also I keep reading people have continued pain after detethering. What kind of

pain are people having? I do as well but am not sure if this is normal....

normal for us that is.

Thanks for again for everyone's participation. It helps to know that there are

others out there that can relate to me!

Peace,

Re: Is detethering worth it ?

All of it is all true, which is confusing because we

have a rare disorder with a wildly varied outcome.

This will give you a lot of different feedback when

you look to the one in one thousand, which is us at

large then the one in 5 who have a symptomatic

retether following that. That's not even considering

the many variations of tethered cord and how/why it's

tethered.

I agonized over the decision. The only thing i can

say about it overall is, if you choose to go forward

with a first detether, find the best doctor. That's

because the second or third detether is much more

complicated.

This is a huge faith to place in a human being so I

just researched it til I was blue in the face then

went for it. I asked a lot here and then asked a lot

from anyone else who would know. I read medical

papers and asked medical evaluators even. Don't be

afraid to insist on what you need. That's the biggest

thing overall I think in any healthcare situation.

I have similar pain and similar symptoms but unlike

Nina, have less time to account for since I had

surgery 3 months ago. Therefore I find comfort in

hearing that she doesn't regret it. She has more

history. It's so far a net positive and no regrets

for having the surgery. So far, I'm better off. I

can do more after 3 months than I could before. I

cant feel my foot and I have pain but today I played

tennis. I didn't dodge for tough shots but I was able

to get some footwork that I couldn't before. I was so

happy I almost cried. I can do a lot more than

before.

Perhaps we should get together and write a casebook

for everyone. Nina's diary was the only reference I

had for a long term adult case story which was

immensely helpful, as was everyone's individual

advice. Why don't we do this on a larger scale?

Sincerely,

--- " AB Bunton, Electrical & Electronic Engineering "

wrote:

> I feel I must reply to the " sum things up " in this

> email and say that this

> summing up is very stark and in most cases, not the

> right way to

> contemplate detethering surgery.

>

> The argument not to have the detethering due to pain

> is, I feel, an

> erroneous one. Pain can compromise one's life

> activities, enjoyment,

> interaction at work, home, keeping fit etc etc. Pain

> is also an indication

> that something is wrong, and that some damage is

> being done to the body.

>

> I had my detethering when my pain was approximately

> 7.5/10 every day. It

> progressed some days to 9.5/10 and other days

> regressed to approx 2/10.

> Despite the good days, my neurosurgeon said I *had*

> to have the detethering

> to save my good nerves and function. Any reduction

> in pain would be a bonus

> - and indeed that is how it turned out.

>

> Being cynical, if anyone can live with pain, and

> turn down the opportunity

> to have a reduction in that pain, then they are

> possibly turning down

> prospects of a better outcome in that surgery.

>

> BTW: I had my detethering 5 years ago on 31st July.

> I have ended up with

> erythromelalgia, complex regional pain syndrome and

> facet joint erosion in

> my back - but I would not have missed having the

> surgery. It gave me my

> life back, albeit with some restrictions, but by now

> I would have been in a

> wheelchair permanently, would have lost control of

> bowel and bladder, and

> would have been thoroughly miserable.

>

> The decision is of course very individualised, but

> overall, having a

> detethering is worth it. It is not a good thing to

> say " what if I

> retether " . No-one has a crystal ball to see 5 years

> down the line. " What if

> I *don't* retether " - that's got to be a good thing

>

> Regards

>

> Nina

> Bristol, UK

>

>

> --On 07 July 2006 11:33 -0700 christy hylton

> wrote:

>

> > You have most definitely raised a good topic!! In

> my experiences and

> > opinions..I would have to say that surgery is a

> good sollution depending

> > on your symptoms and reasons for having the

> surgery. Once you have the

> > surgey...You are more than likely going to

> retether at some point again

> > in your life. For some it takes months for others

> it can take years. So

> > I feel like you should wait until you are really

> loosing function of your

> > legs. By this I mean that walking is becoming

> almost impossible. I only

> > mean this for ADULTS. In Children I feel like

> they should have it done

> > as soon as possible to prevent further nerve

> damage.

> > My first detethering went very well, and I was

> glad at the time that I

> > had it done. But all my symptoms came back

> bacause I retethered due to

> > scar tissue. So I had a second surgery.

> Unfortunately for me, things

> > were worse after the surgery, compared to what I

> was like before I had it

> > done. So I do regret the second surgery. If I

> had it to do all over

> > again.....I would have waited before I had the

> very first surgery. I

> > thought that my symptoms at the time were pretty

> bad before the

> > first....but knowing what I know now....they

> werent sooo bad. I could

> > have lived with them and waited till they got

> worse. So in my opinon I

> > am totally against multiple surgeries, unless it

> is life or death

> > situations.

> > To Sum things up....If your having the surgery

> because of...

> > 1. Pain...DONT DO IT

> > 2. Bladder or Bowel control...DONT DO IT

> > 3. you can barely walk...THEN DO IT!!

> >

> > This is only my opinion though..and I did notice

> reading the other

> > replies..the ones that think surgery is worth

> it..was the ones that

> > recently have had it done..I cant help but wonder

> in a few years will

> > they think the same thing. So that is something

> else you might want to

> > take into consideration.

> > Love and Prayers to All,

> > Christy

> >

> > blessedwithmojo wrote:

> >

> > I'm still trying to figure it all out, but my

> biggest question / fear

> > is - is detethering worth it ? I took Dr B's words

> to be that he could

> > dethether me and end my low back pain and all my

> waist down symptoms.

> >

> > By reading these posts I'm not so sure.( Don't get

> me wrong guys, I LOVE

> > this sites honesty and forthcoming, wouldn't be

> here if it wasn't that

> > way, please don't ever change, lol ) I understand

> scar tissure growing

> > back and the need for more detethering down the

> road, but is it just me

> > or does it seem that its a bit more complicated

> then just scar tissue

> > regrowth.

> >

> > Is it also that MRI's only show so much and once a

> surgeon gets in there

> > they find more wrong so more work is done possibly

> causing more

> > recovery, ect ?

> >

> > Still having a hard time getting what I want out

> of my head onto the

> > screen so hopefully my questions clear. Do you

> think detethering has

> > been worth doing ? Should someone wait as long as

> possible before doing

> > it ? Or go as soon as possible ? Looking for

> opinions from those who

> > have been there before me. Thanks everyone :-).

> >

> >

> >

> >

> >

> >

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

> > Yahoo! Music Unlimited - Access over 1 million

> songs.Try it free.

> >

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

> removed]

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> > kathy@...,michelle@...,

> rick@...

> >

[Guest guest]

Hmmm... so when you say DON'T do it for bowel and bladder control, then

detethering won't make a difference in adults once those have become

affected ? In other words once bladder or bowel issues have become an

issue in adults, they are here to stay ? I haven't seen any Dr really

for these issues ( we know the issues are there, just no testing to know

the extent ) so I don't know a lot.

>

> I'm still trying to figure it all out, but my biggest question / fear

> is - is detethering worth it ? I took Dr B's words to be that he could

> dethether me and end my low back pain and all my waist down symptoms.

>

> By reading these posts I'm not so sure.( Don't get me wrong guys, I

LOVE

> this sites honesty and forthcoming, wouldn't be here if it wasn't that

> way, please don't ever change, lol ) I understand scar tissure growing

> back and the need for more detethering down the road, but is it just

me

> or does it seem that its a bit more complicated then just scar tissue

> regrowth.

>

> Is it also that MRI's only show so much and once a surgeon gets in

there

> they find more wrong so more work is done possibly causing more

> recovery, ect ?

>

> Still having a hard time getting what I want out of my head onto the

> screen so hopefully my questions clear. Do you think detethering has

> been worth doing ? Should someone wait as long as possible before

doing

> it ? Or go as soon as possible ? Looking for opinions from those who

> have been there before me. Thanks everyone :-).

>

>

>

>

>

>

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

> Yahoo! Music Unlimited - Access over 1 million songs.Try it free.

>

>

[Guest guest]

Christy,

I wanted to ask you why you thought that you shouldn't have surgery

for pain, bowel and bladder issues. Is your oppinion based soley on

the fact that you retethered? Would you offer the same advice to

someone with the OTFT type of tethered cord where the incidence of

retethering from scar tissue is very rare? I live in pain every day

and it has dramaticaly improved since the detethering but, the big

reason I had the surgery was to stop the progression of bowel/bladder

and to help relieve pressure from ACM. True by the time I had surgery

I had major involvement with my legs but I started fighting for the

surgery long before the pain became lack of function. Of course I

have OTFT and made a part of my decison based on the low incidence of

retethering for the subset of the tethered cord population I am in.

Charnel

>

> I'm still trying to figure it all out, but my biggest question / fear

> is - is detethering worth it ? I took Dr B's words to be that he could

> dethether me and end my low back pain and all my waist down symptoms.

>

> By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE

> this sites honesty and forthcoming, wouldn't be here if it wasn't that

> way, please don't ever change, lol ) I understand scar tissure growing

> back and the need for more detethering down the road, but is it just me

> or does it seem that its a bit more complicated then just scar tissue

> regrowth.

>

> Is it also that MRI's only show so much and once a surgeon gets in there

> they find more wrong so more work is done possibly causing more

> recovery, ect ?

>

> Still having a hard time getting what I want out of my head onto the

> screen so hopefully my questions clear. Do you think detethering has

> been worth doing ? Should someone wait as long as possible before doing

> it ? Or go as soon as possible ? Looking for opinions from those who

> have been there before me. Thanks everyone :-).

>

>

>

>

>

>

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

> Yahoo! Music Unlimited - Access over 1 million songs.Try it free.

>

>

[Guest guest]

, , Nina

I think this would be great, either in a formal book, or just part of the

website. I really appreciate having everyone's thoughts, opinions and stories

here, it has been immensely helpful. BTW, having a rotten leg day. For some

reason the last 5 days have been awful, shooting pain in my hamstring and back

of my leg, wobbling around, usually this is my reminder to slow down and things

calm down.

AG

Re: Is detethering worth it ?

All of it is all true, which is confusing because we

have a rare disorder with a wildly varied outcome.

This will give you a lot of different feedback when

you look to the one in one thousand, which is us at

large then the one in 5 who have a symptomatic

retether following that. That's not even considering

the many variations of tethered cord and how/why it's

tethered.

I agonized over the decision. The only thing i can

say about it overall is, if you choose to go forward

with a first detether, find the best doctor. That's

because the second or third detether is much more

complicated.

This is a huge faith to place in a human being so I

just researched it til I was blue in the face then

went for it. I asked a lot here and then asked a lot

from anyone else who would know. I read medical

papers and asked medical evaluators even. Don't be

afraid to insist on what you need. That's the biggest

thing overall I think in any healthcare situation.

I have similar pain and similar symptoms but unlike

Nina, have less time to account for since I had

surgery 3 months ago. Therefore I find comfort in

hearing that she doesn't regret it. She has more

history. It's so far a net positive and no regrets

for having the surgery. So far, I'm better off. I

can do more after 3 months than I could before. I

cant feel my foot and I have pain but today I played

tennis. I didn't dodge for tough shots but I was able

to get some footwork that I couldn't before. I was so

happy I almost cried. I can do a lot more than

before.

Perhaps we should get together and write a casebook

for everyone. Nina's diary was the only reference I

had for a long term adult case story which was

immensely helpful, as was everyone's individual

advice. Why don't we do this on a larger scale?

Sincerely,

--- " AB Bunton, Electrical & Electronic Engineering "

> wrote:

> I feel I must reply to the " sum things up " in this

> email and say that this

> summing up is very stark and in most cases, not the

> right way to

> contemplate detethering surgery.

>

> The argument not to have the detethering due to pain

> is, I feel, an

> erroneous one. Pain can compromise one's life

> activities, enjoyment,

> interaction at work, home, keeping fit etc etc. Pain

> is also an indication

> that something is wrong, and that some damage is

> being done to the body.

>

> I had my detethering when my pain was approximately

> 7.5/10 every day. It

> progressed some days to 9.5/10 and other days

> regressed to approx 2/10.

> Despite the good days, my neurosurgeon said I *had*

> to have the detethering

> to save my good nerves and function. Any reduction

> in pain would be a bonus

> - and indeed that is how it turned out.

>

> Being cynical, if anyone can live with pain, and

> turn down the opportunity

> to have a reduction in that pain, then they are

> possibly turning down

> prospects of a better outcome in that surgery.

>

> BTW: I had my detethering 5 years ago on 31st July.

> I have ended up with

> erythromelalgia, complex regional pain syndrome and

> facet joint erosion in

> my back - but I would not have missed having the

> surgery. It gave me my

> life back, albeit with some restrictions, but by now

> I would have been in a

> wheelchair permanently, would have lost control of

> bowel and bladder, and

> would have been thoroughly miserable.

>

> The decision is of course very individualised, but

> overall, having a

> detethering is worth it. It is not a good thing to

> say " what if I

> retether " . No-one has a crystal ball to see 5 years

> down the line. " What if

> I *don't* retether " - that's got to be a good thing

>

> Regards

>

> Nina

> Bristol, UK

>

>

> --On 07 July 2006 11:33 -0700 christy hylton

> > wrote:

>

> > You have most definitely raised a good topic!! In

> my experiences and

> > opinions..I would have to say that surgery is a

> good sollution depending

> > on your symptoms and reasons for having the

> surgery. Once you have the

> > surgey...You are more than likely going to

> retether at some point again

> > in your life. For some it takes months for others

> it can take years. So

> > I feel like you should wait until you are really

> loosing function of your

> > legs. By this I mean that walking is becoming

> almost impossible. I only

> > mean this for ADULTS. In Children I feel like

> they should have it done

> > as soon as possible to prevent further nerve

> damage.

> > My first detethering went very well, and I was

> glad at the time that I

> > had it done. But all my symptoms came back

> bacause I retethered due to

> > scar tissue. So I had a second surgery.

> Unfortunately for me, things

> > were worse after the surgery, compared to what I

> was like before I had it

> > done. So I do regret the second surgery. If I

> had it to do all over

> > again.....I would have waited before I had the

> very first surgery. I

> > thought that my symptoms at the time were pretty

> bad before the

> > first....but knowing what I know now....they

> werent sooo bad. I could

> > have lived with them and waited till they got

> worse. So in my opinon I

> > am totally against multiple surgeries, unless it

> is life or death

> > situations.

> > To Sum things up....If your having the surgery

> because of...

> > 1. Pain...DONT DO IT

> > 2. Bladder or Bowel control...DONT DO IT

> > 3. you can barely walk...THEN DO IT!!

> >

> > This is only my opinion though..and I did notice

> reading the other

> > replies..the ones that think surgery is worth

> it..was the ones that

> > recently have had it done..I cant help but wonder

> in a few years will

> > they think the same thing. So that is something

> else you might want to

> > take into consideration.

> > Love and Prayers to All,

> > Christy

> >

> > blessedwithmojo

> wrote:

> >

> > I'm still trying to figure it all out, but my

> biggest question / fear

> > is - is detethering worth it ? I took Dr B's words

> to be that he could

> > dethether me and end my low back pain and all my

> waist down symptoms.

> >

> > By reading these posts I'm not so sure.( Don't get

> me wrong guys, I LOVE

> > this sites honesty and forthcoming, wouldn't be

> here if it wasn't that

> > way, please don't ever change, lol ) I understand

> scar tissure growing

> > back and the need for more detethering down the

> road, but is it just me

> > or does it seem that its a bit more complicated

> then just scar tissue

> > regrowth.

> >

> > Is it also that MRI's only show so much and once a

> surgeon gets in there

> > they find more wrong so more work is done possibly

> causing more

> > recovery, ect ?

> >

> > Still having a hard time getting what I want out

> of my head onto the

> > screen so hopefully my questions clear. Do you

> think detethering has

> > been worth doing ? Should someone wait as long as

> possible before doing

> > it ? Or go as soon as possible ? Looking for

> opinions from those who

> > have been there before me. Thanks everyone :-).

> >

> >

> >

> >

> >

> >

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

> > Yahoo! Music Unlimited - Access over 1 million

> songs.Try it free.

> >

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

> removed]

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> >

kathy@...,michelle@...<\

mailto:michelle@...>,

> rick@...

> >

[Guest guest]

Hi All,

I can't remember if those that have had surgery for detethering more than 3

months ago (that's where I'm at) still have what is described below, the leg

pain w/the shooting pains. .. . the tightening so much that walking is painful.

Unfortunately after several great weeks, I am again experiencing (wow, what a

surprise!) leg pain and shooting pains as well as other symtpoms. I usually do

what ia describes and slow down and it calms down but this week isn't going

to be one of those weeks that's possible to do. SO, any other suggestions would

be great.

My physical therapist is a bit concerned ( I can tell because she has been

w/me for the last 6 years and knows my body better than I think I do sometimes).

She is going to attempt to call TCI and ask some questions so she can better

help me. I wished her luck in getting through - I sent an email a couple weeks

ago to my nurse and haven't heard back.

Just when you think things are moving along just fine - this stupid

nerve/muscle spinal cord thing rears it's ugly head again! At least it's better

than before surgery, I would be in bed still . . . . !!

Wyoming

A Gosp wrote:

, , Nina

I think this would be great, either in a formal book, or just part of the

website. I really appreciate having everyone's thoughts, opinions and stories

here, it has been immensely helpful. BTW, having a rotten leg day. For some

reason the last 5 days have been awful, shooting pain in my hamstring and back

of my leg, wobbling around, usually this is my reminder to slow down and things

calm down.

AG

Re: Is detethering worth it ?

All of it is all true, which is confusing because we

have a rare disorder with a wildly varied outcome.

This will give you a lot of different feedback when

you look to the one in one thousand, which is us at

large then the one in 5 who have a symptomatic

retether following that. That's not even considering

the many variations of tethered cord and how/why it's

tethered.

I agonized over the decision. The only thing i can

say about it overall is, if you choose to go forward

with a first detether, find the best doctor. That's

because the second or third detether is much more

complicated.

This is a huge faith to place in a human being so I

just researched it til I was blue in the face then

went for it. I asked a lot here and then asked a lot

from anyone else who would know. I read medical

papers and asked medical evaluators even. Don't be

afraid to insist on what you need. That's the biggest

thing overall I think in any healthcare situation.

I have similar pain and similar symptoms but unlike

Nina, have less time to account for since I had

surgery 3 months ago. Therefore I find comfort in

hearing that she doesn't regret it. She has more

history. It's so far a net positive and no regrets

for having the surgery. So far, I'm better off. I

can do more after 3 months than I could before. I

cant feel my foot and I have pain but today I played

tennis. I didn't dodge for tough shots but I was able

to get some footwork that I couldn't before. I was so

happy I almost cried. I can do a lot more than

before.

Perhaps we should get together and write a casebook

for everyone. Nina's diary was the only reference I

had for a long term adult case story which was

immensely helpful, as was everyone's individual

advice. Why don't we do this on a larger scale?

Sincerely,

--- " AB Bunton, Electrical & Electronic Engineering "

> wrote:

> I feel I must reply to the " sum things up " in this

> email and say that this

> summing up is very stark and in most cases, not the

> right way to

> contemplate detethering surgery.

>

> The argument not to have the detethering due to pain

> is, I feel, an

> erroneous one. Pain can compromise one's life

> activities, enjoyment,

> interaction at work, home, keeping fit etc etc. Pain

> is also an indication

> that something is wrong, and that some damage is

> being done to the body.

>

> I had my detethering when my pain was approximately

> 7.5/10 every day. It

> progressed some days to 9.5/10 and other days

> regressed to approx 2/10.

> Despite the good days, my neurosurgeon said I *had*

> to have the detethering

> to save my good nerves and function. Any reduction

> in pain would be a bonus

> - and indeed that is how it turned out.

>

> Being cynical, if anyone can live with pain, and

> turn down the opportunity

> to have a reduction in that pain, then they are

> possibly turning down

> prospects of a better outcome in that surgery.

>

> BTW: I had my detethering 5 years ago on 31st July.

> I have ended up with

> erythromelalgia, complex regional pain syndrome and

> facet joint erosion in

> my back - but I would not have missed having the

> surgery. It gave me my

> life back, albeit with some restrictions, but by now

> I would have been in a

> wheelchair permanently, would have lost control of

> bowel and bladder, and

> would have been thoroughly miserable.

>

> The decision is of course very individualised, but

> overall, having a

> detethering is worth it. It is not a good thing to

> say " what if I

> retether " . No-one has a crystal ball to see 5 years

> down the line. " What if

> I *don't* retether " - that's got to be a good thing

>

> Regards

>

> Nina

> Bristol, UK

>

>

> --On 07 July 2006 11:33 -0700 christy hylton

> > wrote:

>

> > You have most definitely raised a good topic!! In

> my experiences and

> > opinions..I would have to say that surgery is a

> good sollution depending

> > on your symptoms and reasons for having the

> surgery. Once you have the

> > surgey...You are more than likely going to

> retether at some point again

> > in your life. For some it takes months for others

> it can take years. So

> > I feel like you should wait until you are really

> loosing function of your

> > legs. By this I mean that walking is becoming

> almost impossible. I only

> > mean this for ADULTS. In Children I feel like

> they should have it done

> > as soon as possible to prevent further nerve

> damage.

> > My first detethering went very well, and I was

> glad at the time that I

> > had it done. But all my symptoms came back

> bacause I retethered due to

> > scar tissue. So I had a second surgery.

> Unfortunately for me, things

> > were worse after the surgery, compared to what I

> was like before I had it

> > done. So I do regret the second surgery. If I

> had it to do all over

> > again.....I would have waited before I had the

> very first surgery. I

> > thought that my symptoms at the time were pretty

> bad before the

> > first....but knowing what I know now....they

> werent sooo bad. I could

> > have lived with them and waited till they got

> worse. So in my opinon I

> > am totally against multiple surgeries, unless it

> is life or death

> > situations.

> > To Sum things up....If your having the surgery

> because of...

> > 1. Pain...DONT DO IT

> > 2. Bladder or Bowel control...DONT DO IT

> > 3. you can barely walk...THEN DO IT!!

> >

> > This is only my opinion though..and I did notice

> reading the other

> > replies..the ones that think surgery is worth

> it..was the ones that

> > recently have had it done..I cant help but wonder

> in a few years will

> > they think the same thing. So that is something

> else you might want to

> > take into consideration.

> > Love and Prayers to All,

> > Christy

> >

> > blessedwithmojo >

wrote:

> >

> > I'm still trying to figure it all out, but my

> biggest question / fear

> > is - is detethering worth it ? I took Dr B's words

> to be that he could

> > dethether me and end my low back pain and all my

> waist down symptoms.

> >

> > By reading these posts I'm not so sure.( Don't get

> me wrong guys, I LOVE

> > this sites honesty and forthcoming, wouldn't be

> here if it wasn't that

> > way, please don't ever change, lol ) I understand

> scar tissure growing

> > back and the need for more detethering down the

> road, but is it just me

> > or does it seem that its a bit more complicated

> then just scar tissue

> > regrowth.

> >

> > Is it also that MRI's only show so much and once a

> surgeon gets in there

> > they find more wrong so more work is done possibly

> causing more

> > recovery, ect ?

> >

> > Still having a hard time getting what I want out

> of my head onto the

> > screen so hopefully my questions clear. Do you

> think detethering has

> > been worth doing ? Should someone wait as long as

> possible before doing

> > it ? Or go as soon as possible ? Looking for

> opinions from those who

> > have been there before me. Thanks everyone :-).

> >

> >

> >

> >

> >

> >

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

> > Yahoo! Music Unlimited - Access over 1 million

> songs.Try it free.

> >

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

> removed]

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> >

kathy@...,michelle@...<\

mailto:michelle@...>,

> rick@...

> >

[Guest guest]

I know what you mean, I was pain free for a year, until I retethered. Now,

some days I feel normal and others I can't bear the pain. I am getting

really disgusted, I have no dr anymore, no one will treat me, pain

management in the area will not give me meds, and will not try any

procedures. My bowel and bladder control are getting worse. I now have

knee pain (no reason) according to ortho. I am having surgery to see what

is going on. I am so afraid it is from my spine. I know I could be a lot

worse, but having small problems that limit your life are just as

frustrating as serious disabilities. I try not to complain, but I have

responsibilities (aging Mom) and some days are too much to handle.

Sitting and standing are bad for me. I retired two years ago after being a

secretary for 30 years, hoping not sitting so much would help, didn't

matter. Hang in there, hope you are some day PAIN FREE. Judy

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: Re: Is detethering worth it ?

>Date: Tue, 11 Jul 2006 06:08:11 -0700 (PDT)

>

>Hi All,

>

> I can't remember if those that have had surgery for detethering more

>than 3 months ago (that's where I'm at) still have what is described below,

>the leg pain w/the shooting pains. .. . the tightening so much that walking

>is painful.

>

> Unfortunately after several great weeks, I am again experiencing (wow,

>what a surprise!) leg pain and shooting pains as well as other symtpoms. I

>usually do what ia describes and slow down and it calms down but this

>week isn't going to be one of those weeks that's possible to do. SO, any

>other suggestions would be great.

>

> My physical therapist is a bit concerned ( I can tell because she has

>been w/me for the last 6 years and knows my body better than I think I do

>sometimes). She is going to attempt to call TCI and ask some questions so

>she can better help me. I wished her luck in getting through - I sent an

>email a couple weeks ago to my nurse and haven't heard back.

>

> Just when you think things are moving along just fine - this stupid

>nerve/muscle spinal cord thing rears it's ugly head again! At least it's

>better than before surgery, I would be in bed still . . . . !!

>

>

> Wyoming

>

>

>

>A Gosp wrote:

> , , Nina

>I think this would be great, either in a formal book, or just part of the

>website. I really appreciate having everyone's thoughts, opinions and

>stories here, it has been immensely helpful. BTW, having a rotten leg day.

>For some reason the last 5 days have been awful, shooting pain in my

>hamstring and back of my leg, wobbling around, usually this is my reminder

>to slow down and things calm down.

>AG

>

> Re: Is detethering worth it ?

>

>All of it is all true, which is confusing because we

>have a rare disorder with a wildly varied outcome.

>This will give you a lot of different feedback when

>you look to the one in one thousand, which is us at

>large then the one in 5 who have a symptomatic

>retether following that. That's not even considering

>the many variations of tethered cord and how/why it's

>tethered.

>

>I agonized over the decision. The only thing i can

>say about it overall is, if you choose to go forward

>with a first detether, find the best doctor. That's

>because the second or third detether is much more

>complicated.

>

>This is a huge faith to place in a human being so I

>just researched it til I was blue in the face then

>went for it. I asked a lot here and then asked a lot

>from anyone else who would know. I read medical

>papers and asked medical evaluators even. Don't be

>afraid to insist on what you need. That's the biggest

>thing overall I think in any healthcare situation.

>

>I have similar pain and similar symptoms but unlike

>Nina, have less time to account for since I had

>surgery 3 months ago. Therefore I find comfort in

>hearing that she doesn't regret it. She has more

>history. It's so far a net positive and no regrets

>for having the surgery. So far, I'm better off. I

>can do more after 3 months than I could before. I

>cant feel my foot and I have pain but today I played

>tennis. I didn't dodge for tough shots but I was able

>to get some footwork that I couldn't before. I was so

>happy I almost cried. I can do a lot more than

>before.

>

>Perhaps we should get together and write a casebook

>for everyone. Nina's diary was the only reference I

>had for a long term adult case story which was

>immensely helpful, as was everyone's individual

>advice. Why don't we do this on a larger scale?

>

>Sincerely,

>

>

>

>--- " AB Bunton, Electrical & Electronic Engineering "

>> wrote:

>

> > I feel I must reply to the " sum things up " in this

> > email and say that this

> > summing up is very stark and in most cases, not the

> > right way to

> > contemplate detethering surgery.

> >

> > The argument not to have the detethering due to pain

> > is, I feel, an

> > erroneous one. Pain can compromise one's life

> > activities, enjoyment,

> > interaction at work, home, keeping fit etc etc. Pain

> > is also an indication

> > that something is wrong, and that some damage is

> > being done to the body.

> >

> > I had my detethering when my pain was approximately

> > 7.5/10 every day. It

> > progressed some days to 9.5/10 and other days

> > regressed to approx 2/10.

> > Despite the good days, my neurosurgeon said I *had*

> > to have the detethering

> > to save my good nerves and function. Any reduction

> > in pain would be a bonus

> > - and indeed that is how it turned out.

> >

> > Being cynical, if anyone can live with pain, and

> > turn down the opportunity

> > to have a reduction in that pain, then they are

> > possibly turning down

> > prospects of a better outcome in that surgery.

> >

> > BTW: I had my detethering 5 years ago on 31st July.

> > I have ended up with

> > erythromelalgia, complex regional pain syndrome and

> > facet joint erosion in

> > my back - but I would not have missed having the

> > surgery. It gave me my

> > life back, albeit with some restrictions, but by now

> > I would have been in a

> > wheelchair permanently, would have lost control of

> > bowel and bladder, and

> > would have been thoroughly miserable.

> >

> > The decision is of course very individualised, but

> > overall, having a

> > detethering is worth it. It is not a good thing to

> > say " what if I

> > retether " . No-one has a crystal ball to see 5 years

> > down the line. " What if

> > I *don't* retether " - that's got to be a good thing

> >

> > Regards

> >

> > Nina

> > Bristol, UK

> >

> >

> > --On 07 July 2006 11:33 -0700 christy hylton

> > > wrote:

> >

> > > You have most definitely raised a good topic!! In

> > my experiences and

> > > opinions..I would have to say that surgery is a

> > good sollution depending

> > > on your symptoms and reasons for having the

> > surgery. Once you have the

> > > surgey...You are more than likely going to

> > retether at some point again

> > > in your life. For some it takes months for others

> > it can take years. So

> > > I feel like you should wait until you are really

> > loosing function of your

> > > legs. By this I mean that walking is becoming

> > almost impossible. I only

> > > mean this for ADULTS. In Children I feel like

> > they should have it done

> > > as soon as possible to prevent further nerve

> > damage.

> > > My first detethering went very well, and I was

> > glad at the time that I

> > > had it done. But all my symptoms came back

> > bacause I retethered due to

> > > scar tissue. So I had a second surgery.

> > Unfortunately for me, things

> > > were worse after the surgery, compared to what I

> > was like before I had it

> > > done. So I do regret the second surgery. If I

> > had it to do all over

> > > again.....I would have waited before I had the

> > very first surgery. I

> > > thought that my symptoms at the time were pretty

> > bad before the

> > > first....but knowing what I know now....they

> > werent sooo bad. I could

> > > have lived with them and waited till they got

> > worse. So in my opinon I

> > > am totally against multiple surgeries, unless it

> > is life or death

> > > situations.

> > > To Sum things up....If your having the surgery

> > because of...

> > > 1. Pain...DONT DO IT

> > > 2. Bladder or Bowel control...DONT DO IT

> > > 3. you can barely walk...THEN DO IT!!

> > >

> > > This is only my opinion though..and I did notice

> > reading the other

> > > replies..the ones that think surgery is worth

> > it..was the ones that

> > > recently have had it done..I cant help but wonder

> > in a few years will

> > > they think the same thing. So that is something

> > else you might want to

> > > take into consideration.

> > > Love and Prayers to All,

> > > Christy

> > >

> > > blessedwithmojo

>> wrote:

> > >

> > > I'm still trying to figure it all out, but my

> > biggest question / fear

> > > is - is detethering worth it ? I took Dr B's words

> > to be that he could

> > > dethether me and end my low back pain and all my

> > waist down symptoms.

> > >

> > > By reading these posts I'm not so sure.( Don't get

> > me wrong guys, I LOVE

> > > this sites honesty and forthcoming, wouldn't be

> > here if it wasn't that

> > > way, please don't ever change, lol ) I understand

> > scar tissure growing

> > > back and the need for more detethering down the

> > road, but is it just me

> > > or does it seem that its a bit more complicated

> > then just scar tissue

> > > regrowth.

> > >

> > > Is it also that MRI's only show so much and once a

> > surgeon gets in there

> > > they find more wrong so more work is done possibly

> > causing more

> > > recovery, ect ?

> > >

> > > Still having a hard time getting what I want out

> > of my head onto the

> > > screen so hopefully my questions clear. Do you

> > think detethering has

> > > been worth doing ? Should someone wait as long as

> > possible before doing

> > > it ? Or go as soon as possible ? Looking for

> > opinions from those who

> > > have been there before me. Thanks everyone :-).

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Yahoo! Music Unlimited - Access over 1 million

> > songs.Try it free.

> > >

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

> > removed]

> > >

> > >

> > >

> > >

> > > Not Medical Advice. We Are Not Doctors.

> > > Need help with the list? Email

> > >

>kathy@...,michelle@...\

,

> > rick@...

> > >

[Guest guest]

Gosh, sorry for the delayed response. Anyway, Nina or

anyone, I'm happy to contribute whatever case info you

need from me. Let me know what you need.

As for pain, I have ups and downs but mostly it seems

to be the same. There are a lot of factors that

contribute to the pain for me like weight, caffeine

intake, hydration...or just random stuff. I think I

haven't settled into it long enough to really know the

outcome. It's a chicken and egg situation for me

because if you can't stay mobile you can't stay fit,

if you can't stay fit it's hard to keep weight down.

Once I can get to a certain degree of fitness before

or after the detether it has historically seemed to

help. When I have pain I rest til it goes away then

try to hit workout as hard as I can again. Another

observation -- it seems like regular sitting in a

chair is worse than working out!

Best Wishes,

--- A Gosp wrote:

> , , Nina

> I think this would be great, either in a formal

> book, or just part of the website. I really

> appreciate having everyone's thoughts, opinions and

> stories here, it has been immensely helpful. BTW,

> having a rotten leg day. For some reason the last 5

> days have been awful, shooting pain in my hamstring

> and back of my leg, wobbling around, usually this is

> my reminder to slow down and things calm down.

> AG

>

> Re: Is detethering worth it ?

>

> All of it is all true, which is confusing because

> we

> have a rare disorder with a wildly varied outcome.

>

> This will give you a lot of different feedback

> when

> you look to the one in one thousand, which is us

> at

> large then the one in 5 who have a symptomatic

> retether following that. That's not even

> considering

> the many variations of tethered cord and how/why

> it's

> tethered.

>

> I agonized over the decision. The only thing i can

> say about it overall is, if you choose to go

> forward

> with a first detether, find the best doctor.

> That's

> because the second or third detether is much more

> complicated.

>

> This is a huge faith to place in a human being so

> I

> just researched it til I was blue in the face then

> went for it. I asked a lot here and then asked a

> lot

> from anyone else who would know. I read medical

> papers and asked medical evaluators even. Don't be

> afraid to insist on what you need. That's the

> biggest

> thing overall I think in any healthcare situation.

>

> I have similar pain and similar symptoms but

> unlike

> Nina, have less time to account for since I had

> surgery 3 months ago. Therefore I find comfort in

> hearing that she doesn't regret it. She has more

> history. It's so far a net positive and no regrets

> for having the surgery. So far, I'm better off. I

> can do more after 3 months than I could before. I

> cant feel my foot and I have pain but today I

> played

> tennis. I didn't dodge for tough shots but I was

> able

> to get some footwork that I couldn't before. I was

> so

> happy I almost cried. I can do a lot more than

> before.

>

> Perhaps we should get together and write a

> casebook

> for everyone. Nina's diary was the only reference

> I

> had for a long term adult case story which was

> immensely helpful, as was everyone's individual

> advice. Why don't we do this on a larger scale?

>

> Sincerely,

>

>

>

> --- " AB Bunton, Electrical & Electronic

> Engineering "

>

>

>

> wrote:

>

> > I feel I must reply to the " sum things up " in

> this

> > email and say that this

> > summing up is very stark and in most cases, not

> the

> > right way to

> > contemplate detethering surgery.

> >

> > The argument not to have the detethering due to

> pain

> > is, I feel, an

> > erroneous one. Pain can compromise one's life

> > activities, enjoyment,

> > interaction at work, home, keeping fit etc etc.

> Pain

> > is also an indication

> > that something is wrong, and that some damage is

> > being done to the body.

> >

> > I had my detethering when my pain was

> approximately

> > 7.5/10 every day. It

> > progressed some days to 9.5/10 and other days

> > regressed to approx 2/10.

> > Despite the good days, my neurosurgeon said I

> *had*

> > to have the detethering

> > to save my good nerves and function. Any

> reduction

> > in pain would be a bonus

> > - and indeed that is how it turned out.

> >

> > Being cynical, if anyone can live with pain, and

> > turn down the opportunity

> > to have a reduction in that pain, then they are

> > possibly turning down

> > prospects of a better outcome in that surgery.

> >

> > BTW: I had my detethering 5 years ago on 31st

> July.

> > I have ended up with

> > erythromelalgia, complex regional pain syndrome

> and

> > facet joint erosion in

> > my back - but I would not have missed having the

> > surgery. It gave me my

> > life back, albeit with some restrictions, but by

> now

> > I would have been in a

> > wheelchair permanently, would have lost control

> of

> > bowel and bladder, and

> > would have been thoroughly miserable.

> >

> > The decision is of course very individualised,

> but

> > overall, having a

> > detethering is worth it. It is not a good thing

> to

> > say " what if I

> > retether " . No-one has a crystal ball to see 5

> years

> > down the line. " What if

> > I *don't* retether " - that's got to be a good

> thing

> >

> > Regards

> >

> > Nina

> > Bristol, UK

> >

> >

> > --On 07 July 2006 11:33 -0700 christy hylton

> > >

> wrote:

> >

> > > You have most definitely raised a good topic!!

> In

> > my experiences and

> > > opinions..I would have to say that surgery is

> a

> > good sollution depending

> > > on your symptoms and reasons for having the

> > surgery. Once you have the

> > > surgey...You are more than likely going to

> > retether at some point again

>

=== message truncated ===

__________________________________________________