Re: Tell me again -- why am I doing this?

[Guest guest]

Sharon, my funny, witty, wonderful friend who lives in her own

beautiful paradise (which I seriously plan to visit):

You answered your own question, which makes my reply much easier

(thank you for that!), but, since you asked, I'll tell you again why

you are doing this...

Why? So you can walk (only until it starts hurting, of course) with

your head held high and your eyes on the horizon. So you can sit

without resting your elbows in your lap. So when you're nearly 80 you

won't be in as bad a state as (or worse than), your flatbacked dad.

So you won't end up with the screaming sciatic pain that has spurred

so many others to seek revision.

And last, but not least, because you love yourself and love living

and recognize that you deserve all of the things you listed above and

more. You have an incredible support group and an amazing outlook on

life in general. Who knows? Maybe some of the leg pain is coming from

your spine (and maybe not, but it might be more bearable if you

aren't dealing with all this other hooey). Your time has come, my

friend. I will be praying for your physical, mental, and spiritual

renewal throughout the next several months and I will definitely be

among your band of angels watching over you. *hugs*

kam

[Guest guest]

It's also for all the multitude of things that the flatback posture affects, that we don't even realise it has done until it's corrected. If the reduction in neck pain and no more of those appalling headaches had been the only result of the revision surgery, it would *still* have been worth it, just for that. No longer having my hips attacking my ribs was pretty damn good too!

I'm sure as you settle in to your recovery that you will find there are many benefits you never expected, and I'll have my fingers crossed that at least part of that will be a considerably greater improvement in your walking than they are expecting )

titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone

[Guest guest]

well, Sharon, I often wonder the same things even though I am pretty

sure that most of my pain is from flatback. After all, there are

some things I can do rather well in this bent over position -- like

gardening, scrubbing the tub and floors, and dancing to reggae music

(it's really the perfect position for dancing)

I had an EMG several years ago when I first decided to see a doctor

for my back pain, and when my left foot went numb while walking

around WalMart. My EMG was also normal. More recently, a lot of

doctors (including the local guy that referred me to Bridwell), say

that my reflexes and leg strength are within normal limits on both

sides (even though the little spoked wheel thing feels different on

the left than on the right).

I figure it is just good news that we don't have any permanent nerve

damage, and I expect that means that we should feel much better once

we recover from surgery (provided that we go through with it!)

>

> First, a disclaimer to any here who think complaining, doubts, and

self-pity have no place in a forum such as this. Close this message

and move on.

>

> Second, if one person says " well, aren't you glad Dr. Rand was

honest with you " , I will scream so loud the Nantucket whales will

swim up here and check me out.

>

> It looks like this leg cramping and pain, which have since age 30

slowly robbed me of the ability to walk any serious distance, is not

coming from a degenerated intervertebral joint. I'm sure I don't

know enough particulars, but even though I have some nerve root

narrowing at that level, and the neurologist who did my EMG found

some slightly abnormal reflex responses in the left leg and a slight

difference on the EMG between the two legs, I guess the test did not

support the idea that my leg miseries are coming from my spine, and

the test was " within normal limits " .

>

> So it's not the MS (if indeed I have MS). It's not the flatback.

Dammit, nobody wants this pain, least of all me!

>

> So why, in about 2 weeks, am I going through 2 grueling operations

back-to-back (or is that back-to-front-to-back, *wry laugh*),

followed by a year or so of recuperation? Why am I even

entertaining the idea of letting some demigod with a razor cut a

little splinter of bone from the center of my vertebra, front and

back, and slip it out of my freakin' spinal cord? (Here insert

black-and-white TV commercial, " OPERATION! 'Remove funny bone... b-

ah-ah-ah-p!!! You blew it, Charlie!' " ) And then detether the

nether end of the cord for good measure, so I don't end up paralyzed

from having my bones joggled, sawed, and (yeah, I'm afraid I have to

say it) screwed?!

>

> Why? Just so I can walk (only until it starts hurting, of course)

with my head held high and my eyes on the horizon? So I can sit

without resting my elbows in my lap? So when I'm nearly 80 I won't

be in as bad a state as (or worse than), my flatbacked dad? So I

won't end up with the screaming sciatic pain that has spurred so

many others to seek revision?

>

> Yeah, I guess so.

>

> Sharon...

>

> (... whose case, being one of congenital scoliosis with split and

tethered spinal cord, is hers alone and doesn't apply to any other

Harrington rod flatback sufferer on this planet or any other in the

known galaxy...)

>

[Guest guest]

Sharon,

I thought of you yesterday, that you were having " the " meeting

with Rand. The one that comes before surgery. Unbelievable to

believe a certain pain or abnormality is coming from one place just

to find out, years later, it isn't. Sorry, I hear your frustration

and emotional

pain shining through. I am not good at writing and I don't want

to be offense, your in my heart, sweet lady and my prayers.

Call if you want an ear.

[Guest guest]

Sharon,

Are you sure we are not twins separated at birth? I am not

offended, put off or insulted by your post. I think you have a

place here just as much as anyone else. In fact I think it is

courageous for you to put into words what your mind must surely be

screaming. I am all ears sister....lay it on me. Some things are

better done together (for some folks) than alone.

You asked why do you go on? Well, I don't know exactly but, I go on

because I don't know any other way. I have 2 daughters and the best

husband anyone could ever have. I am not ready to give up being an

active part of their lives. I have too much to do and too much I

have to see yet. I am not done doing! I am too young to be old, to

hard headed to give in and I have been to the mouth of Hell and I

have survived. At least it felt that way to me. So what's another

trip or two? I am not the type to just lay down and accept

something that I have a chance, even a small chance of changing.

Maybe that is why you go on too. Whatever the reason....good for

you. I'll be here to cheer you on Sharon.

-Joanie

>

> First, a disclaimer to any here who think complaining, doubts, and

self-pity have no place in a forum such as this. Close this message

and move on.

>

> Second, if one person says " well, aren't you glad Dr. Rand was

honest with you " , I will scream so loud the Nantucket whales will

swim up here and check me out.

>

> It looks like this leg cramping and pain, which have since age 30

slowly robbed me of the ability to walk any serious distance, is not

coming from a degenerated intervertebral joint. I'm sure I don't

know enough particulars, but even though I have some nerve root

narrowing at that level, and the neurologist who did my EMG found

some slightly abnormal reflex responses in the left leg and a slight

difference on the EMG between the two legs, I guess the test did not

support the idea that my leg miseries are coming from my spine, and

the test was " within normal limits " .

>

> So it's not the MS (if indeed I have MS). It's not the flatback.

Dammit, nobody wants this pain, least of all me!

>

> So why, in about 2 weeks, am I going through 2 grueling operations

back-to-back (or is that back-to-front-to-back, *wry laugh*),

followed by a year or so of recuperation? Why am I even

entertaining the idea of letting some demigod with a razor cut a

little splinter of bone from the center of my vertebra, front and

back, and slip it out of my freakin' spinal cord? (Here insert

black-and-white TV commercial, " OPERATION! 'Remove funny bone... b-

ah-ah-ah-p!!! You blew it, Charlie!' " ) And then detether the

nether end of the cord for good measure, so I don't end up paralyzed

from having my bones joggled, sawed, and (yeah, I'm afraid I have to

say it) screwed?!

>

> Why? Just so I can walk (only until it starts hurting, of course)

with my head held high and my eyes on the horizon? So I can sit

without resting my elbows in my lap? So when I'm nearly 80 I won't

be in as bad a state as (or worse than), my flatbacked dad? So I

won't end up with the screaming sciatic pain that has spurred so

many others to seek revision?

>

> Yeah, I guess so.

>

> Sharon...

>

> (... whose case, being one of congenital scoliosis with split and

tethered spinal cord, is hers alone and doesn't apply to any other

Harrington rod flatback sufferer on this planet or any other in the

known galaxy...)

>

[Guest guest]

Thanks, Titch.

I do think you're right. I also have the horrible butt numbness from sitting for prolonged periods, and the pain when I stand up. I do think that has to be the spine.

I just REALLY don't relish the idea of recuperating from revision with this awful leg pain and muscle tightness. The neurologist who did the EMG even suggested I might have a bit of diabetic neuropathy. But I've had the leg cramping problem for 18 years, and my sugars are good! My hubby has BAD diabetes, which went undiagnosed for a long time (though probably not 18 years), and his legs are nowhere near as bad as mine. He has toe tingling, too, which I don't have, so I think that neurologist was reaching.

Sharon

Re: [ ] Re: Tell me again -- why am I doing this?

It's also for all the multitude of things that the flatback posture affects, that we don't even realise it has done until it's corrected. If the reduction in neck pain and no more of those appalling headaches had been the only result of the revision surgery, it would *still* have been worth it, just for that. No longer having my hips attacking my ribs was pretty damn good too!

I'm sure as you settle in to your recovery that you will find there are many benefits you never expected, and I'll have my fingers crossed that at least part of that will be a considerably greater improvement in your walking than they are expecting )

titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone

[Guest guest]

Hi Sharon, I am not sure if you are familiar with me.... short version..... 35 yrs old... wore a back brace 5 years when young, s-curve, had spinal fusion at 17 with Harrington rods... no pain until the past 2 or so years. Now massive right hip/leg pain with numbness. My back is so stiff, burning sensation in lower back, etc. My hip/leg pain is horrible. I have another apt on August 15th to figure out how to control the pain or if surgery is needed. I sit all day at my job which makes it so much worse. At night sitting on the couch is near impossible and I now sit on the floor. CristlSharon Green <sharon.green18@...> wrote: Thanks, Titch. I do think you're right. I also have the horrible butt numbness from sitting for prolonged periods, and the pain when I stand up. I do think that has to be the spine. I just REALLY don't relish the idea of recuperating from revision with this awful leg pain and muscle tightness. The neurologist who did the EMG even suggested I might have a bit of diabetic neuropathy. But I've had the leg cramping problem for 18 years, and my sugars are good! My hubby has BAD diabetes, which went

undiagnosed for a long time (though probably not 18 years), and his legs are nowhere near as bad as mine. He has toe tingling, too, which I don't have, so I think that neurologist was reaching. Sharon Re: [ ] Re: Tell

me again -- why am I doing this? It's also for all the multitude of things that the flatback posture affects, that we don't even realise it has done until it's corrected. If the reduction in neck pain and no more of those appalling headaches had been the only result of the revision surgery, it would *still* have been worth it, just for that. No longer having my hips attacking my ribs was pretty damn good too! I'm sure as you settle in to your recovery that you will find there are many benefits you never expected, and I'll have my fingers crossed that at least part of that will be a considerably greater improvement in your walking than they are expecting ) titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

I hope you're right, Suzanne. I just wish Dr. Rand had been more encouraging. He does say he has worked on people with congenital scoli, split cord, and tethered cord, and only one person was unable to be revised, and she has a myelomeningocele. That was encouraging, but he probably didn't want to give me false hope about the leg pain.

Sharon

[ ] Re: Tell me again -- why am I doing this?

well, Sharon, I often wonder the same things even though I am pretty sure that most of my pain is from flatback. After all, there are some things I can do rather well in this bent over position -- like gardening, scrubbing the tub and floors, and dancing to reggae music (it's really the perfect position for dancing)I had an EMG several years ago when I first decided to see a doctor for my back pain, and when my left foot went numb while walking around WalMart. My EMG was also normal. More recently, a lot of doctors (including the local guy that referred me to Bridwell), say that my reflexes and leg strength are within normal limits on both sides (even though the little spoked wheel thing feels different on the left than on the right).I figure it is just good news that we don't have any permanent nerve damage, and I expect that means that we should feel much better once we recover from surgery (provided that we go through with it!)>> First, a disclaimer to any here who think complaining, doubts, and self-pity have no place in a forum such as this. Close this message and move on.> > Second, if one person says "well, aren't you glad Dr. Rand was honest with you", I will scream so loud the Nantucket whales will swim up here and check me out.> > It looks like this leg cramping and pain, which have since age 30 slowly robbed me of the ability to walk any serious distance, is not coming from a degenerated intervertebral joint. I'm sure I don't know enough particulars, but even though I have some nerve root narrowing at that level, and the neurologist who did my EMG found some slightly abnormal reflex responses in the left leg and a slight difference on the EMG between the two legs, I guess the test did not support the idea that my leg miseries are coming from my spine, and the test was "within normal limits".> > So it's not the MS (if indeed I have MS). It's not the flatback. Dammit, nobody wants this pain, least of all me!> > So why, in about 2 weeks, am I going through 2 grueling operations back-to-back (or is that back-to-front-to-back, *wry laugh*), followed by a year or so of recuperation? Why am I even entertaining the idea of letting some demigod with a razor cut a little splinter of bone from the center of my vertebra, front and back, and slip it out of my freakin' spinal cord? (Here insert black-and-white TV commercial, "OPERATION! 'Remove funny bone... b-ah-ah-ah-p!!! You blew it, Charlie!'") And then detether the nether end of the cord for good measure, so I don't end up paralyzed from having my bones joggled, sawed, and (yeah, I'm afraid I have to say it) screwed?!> > Why? Just so I can walk (only until it starts hurting, of course) with my head held high and my eyes on the horizon? So I can sit without resting my elbows in my lap? So when I'm nearly 80 I won't be in as bad a state as (or worse than), my flatbacked dad? So I won't end up with the screaming sciatic pain that has spurred so many others to seek revision?> > Yeah, I guess so.> > Sharon...> > (... whose case, being one of congenital scoliosis with split and tethered spinal cord, is hers alone and doesn't apply to any other Harrington rod flatback sufferer on this planet or any other in the known galaxy...)>

[Guest guest]

Thanks, Val. I wasn't ignoring your last message and would like to get together if I can. I want to call both you and Ann, and hope I'll find the time today.

Sharon

[ ] Re: Tell me again -- why am I doing this?

Sharon,I thought of you yesterday, that you were having "the" meetingwith Rand. The one that comes before surgery. Unbelievable tobelieve a certain pain or abnormality is coming from one place justto find out, years later, it isn't. Sorry, I hear your frustration and emotionalpain shining through. I am not good at writing and I don't wantto be offense, your in my heart, sweet lady and my prayers.Call if you want an ear.

[Guest guest]

Sharon,

Well, I think you are doing it because you want to feel better, to live a fuller life. Many of us, including me, had awful leg pain before revision surgery, which was "fixed" by that surgery. I never did have an EMG, though. But one of my first thoughts when I awoke from surgery was that my pre-revision leg pain was gone. Maybe yours is still caused by flatback and/or deterioration that just wasn't noticed by the EMG. I don't think any test is truly 100 percent guaranteed diagnostic. You know how sometimes "they" say they had no real idea how things really were until they opened the patient? My bet is that your leg pain is associated to scoli ills. My vote, not that it counts for much, is to go for it. After all, ain't much choice for relief.

Bonnie

[ ] Tell me again -- why am I doing this?

First, a disclaimer to any here who think complaining, doubts, and self-pity have no place in a forum such as this. Close this message and move on.

Second, if one person says "well, aren't you glad Dr. Rand was honest with you", I will scream so loud the Nantucket whales will swim up here and check me out.

It looks like this leg cramping and pain, which have since age 30 slowly robbed me of the ability to walk any serious distance, is not coming from a degenerated intervertebral joint. I'm sure I don't know enough particulars, but even though I have some nerve root narrowing at that level, and the neurologist who did my EMG found some slightly abnormal reflex responses in the left leg and a slight difference on the EMG between the two legs, I guess the test did not support the idea that my leg miseries are coming from my spine, and the test was "within normal limits".

So it's not the MS (if indeed I have MS). It's not the flatback. Dammit, nobody wants this pain, least of all me!

So why, in about 2 weeks, am I going through 2 grueling operations back-to-back (or is that back-to-front-to-back, *wry laugh*), followed by a year or so of recuperation? Why am I even entertaining the idea of letting some demigod with a razor cut a little splinter of bone from the center of my vertebra, front and back, and slip it out of my freakin' spinal cord? (Here insert black-and-white TV commercial, "OPERATION! 'Remove funny bone... b-ah-ah-ah-p!!! You blew it, Charlie!'") And then detether the nether end of the cord for good measure, so I don't end up paralyzed from having my bones joggled, sawed, and (yeah, I'm afraid I have to say it) screwed?!

Why? Just so I can walk (only until it starts hurting, of course) with my head held high and my eyes on the horizon? So I can sit without resting my elbows in my lap? So when I'm nearly 80 I won't be in as bad a state as (or worse than), my flatbacked dad? So I won't end up with the screaming sciatic pain that has spurred so many others to seek revision?

Yeah, I guess so.

Sharon...

(... whose case, being one of congenital scoliosis with split and tethered spinal cord, is hers alone and doesn't apply to any other Harrington rod flatback sufferer on this planet or any other in the known galaxy...)

[Guest guest]

True, Bonnie. I know I'll end up going for it. This is one instance where I really hope Rand is wrong, although I hear that's pretty rare.

Sharon

[ ] Tell me again -- why am I doing this?

First, a disclaimer to any here who think complaining, doubts, and self-pity have no place in a forum such as this. Close this message and move on.

Second, if one person says "well, aren't you glad Dr. Rand was honest with you", I will scream so loud the Nantucket whales will swim up here and check me out.

It looks like this leg cramping and pain, which have since age 30 slowly robbed me of the ability to walk any serious distance, is not coming from a degenerated intervertebral joint. I'm sure I don't know enough particulars, but even though I have some nerve root narrowing at that level, and the neurologist who did my EMG found some slightly abnormal reflex responses in the left leg and a slight difference on the EMG between the two legs, I guess the test did not support the idea that my leg miseries are coming from my spine, and the test was "within normal limits".

So it's not the MS (if indeed I have MS). It's not the flatback. Dammit, nobody wants this pain, least of all me!

So why, in about 2 weeks, am I going through 2 grueling operations back-to-back (or is that back-to-front-to-back, *wry laugh*), followed by a year or so of recuperation? Why am I even entertaining the idea of letting some demigod with a razor cut a little splinter of bone from the center of my vertebra, front and back, and slip it out of my freakin' spinal cord? (Here insert black-and-white TV commercial, "OPERATION! 'Remove funny bone... b-ah-ah-ah-p!!! You blew it, Charlie!'") And then detether the nether end of the cord for good measure, so I don't end up paralyzed from having my bones joggled, sawed, and (yeah, I'm afraid I have to say it) screwed?!

Why? Just so I can walk (only until it starts hurting, of course) with my head held high and my eyes on the horizon? So I can sit without resting my elbows in my lap? So when I'm nearly 80 I won't be in as bad a state as (or worse than), my flatbacked dad? So I won't end up with the screaming sciatic pain that has spurred so many others to seek revision?

Yeah, I guess so.

Sharon...

(... whose case, being one of congenital scoliosis with split and tethered spinal cord, is hers alone and doesn't apply to any other Harrington rod flatback sufferer on this planet or any other in the known galaxy...)

[Guest guest]

Hi Sharon,

I didn't mean to imply that Dr. Rand is wrong. However, I think one can just visualize so much on x-rays and other tests and seeing the real you in person during surgery gives more information.

Bonnie

[Guest guest]

That's ok by me, Bonnie. I'd be thrilled for him to be wrong on this, just as long as he does a great job on the carpentry!

Sharon

Re: [ ] Tell me again -- why am I doing this?

Hi Sharon,

I didn't mean to imply that Dr. Rand is wrong. However, I think one can just visualize so much on x-rays and other tests and seeing the real you in person during surgery gives more information.

Bonnie