Re: New with lots of questions: Not for the faint of heart

[Guest guest]

Scoliosis, like cancer IS a dreadful diagnosis. However, both can be treated,

and hopefully successfully. Make no mistake, the surgery is very difficult. And

there are often physical restrictions for a lifetime. Whether you want to accept

this description or not, it is often a disability. No one escapes some form of

physical and or mental issues over the span of their lives, the sadness is that

this issue has stepped up to effect our adolescent children. However, the

alternative, to do nothing, is not acceptable.

We went into surgery as no less as a leap of faith. Explore your options

thoroughly, interviewing at least three pediatric orthopedic surgeons and be

brave! You are not alone.

Mel

>

> Cancer is dreadful not scoliosis. My daughter had her surgery and while it was

hard, it is done and over now and she has the rest of her life.

>

>

>

> From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of KnightonND@...

> Sent: Friday, September 09, 2011 2:47 PM

> Scoliosis Treatment

> Subject: Re: New with lots of questions

>

>

>

>

>

> sorry to respond that spinecore isn't considered adequate - don't know about

schroth - it seems that nothing is a treatment other than bracing and, if that

fails, surgery - scoliosis is a dreadful diagnosis

>

> New with lots of questions

>

> Hello everyone, I joined this group in hopes of finding some support and some

answers. It was the only really active group I could find.

>

> Last week during a routine yearly physical my 13 year old daughter's doctor

was concerned about her back. We went and got the xrays done that same day. The

next day the doctor's nurse called and said my daughter has mild scoliosis and

to come back in 6 months. That was it, just hung up after that! Didn't bother

asking if we had any questions or concerns or anything! Needless to say, it left

us shocked and confused. I then went and got a copy of the report and this is

what it says " 10 degree dextrocurvature is present at T4. 9 degree levo

curvature is observed centered at L1. No hemivertebra or other deformities of

the thoracic vertebral bodies are present. Some subluxation or fracture. The

paraspinous soft tissues unremarkable. Conclusion: Mild S scoliosis "

>

> Now, we have no idea what any of this means! We don't know if we should be

seeking a second opinion or are we ok to wait the 6 months for another check up?

Should we seek out a specialist? Can she still participate in sports and PE at

school? Are there any limitations? What do all those numbers and words in the

report mean?

>

> As you can, we are very confused. I love her doctor very much and I fully

trust the doctor but she kind of dropped the ball on this by not offering us any

information! So, I am here hoping to find some answers and some advice!

>

> Thanks

> Jenn

>

>

[Guest guest]

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

I'm sorry, Terri.  While this surgeon is afraid to operate on you, another

would not be.  We have a surgeon here who operates on older people with lots of

success.  So, these doctors are around.  I hope you can find one that will

give you relief.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

 

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

When I had my " big " surgery done, from T4-L5, my surgeon wouldn't do it until

I'd been off morphine for at least a month. This was mainly due to the concern

about pain control after surgery. So I not only got off the meds, I also found

an amazing program that helped me strengthen muscles that had atrophied over the

years. I was 48. Even tho I was in quite good health then for the surgery, I

didn't fuse completely and the rods broke. I then had to have 3 more revision

surgeries and now I'm on more meds than ever and still in a great deal of pain.

On top of it, I can't move as well as before I was fused so it's much more

difficult to exercise.

I think it makes sense that with all your health problems a surgeon wouldn't

want to operate. For each of my surgeries, I was told that in spite of the

risks, my odds of success were greater than 50%. I was told if that wasn't the

case the surgery would not be recommended.

I sympathize with your pain and limitations. Unfortunately, surgery is not

always the answer.

________________________________

From: Lana Jarvis <fyfer1949@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 10:18 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

I'm sorry, Terri.  While this surgeon is afraid to operate on you, another

would not be.  We have a surgeon here who operates on older people with lots of

success.  So, these doctors are around.  I hope you can find one that will

give you relief. And once you've done it there's no going back. It's a huge,

life altering surgery. If I had it to do over, I'd still have had it, but I'd

have waited until I was even stronger than I was, and I would have taken even

better care of myself afterward. If I couldn't have achieved that, I would've

opted not to have had surgery.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

 

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

HI Terri -

Yes, I agree with Lana. My doctor at Washington University in St. Louis,

Missouri is one of three scoliosis surgeons who specialize in severe

deformities. Patients come from all over the world for their expertise. Their

websites are quite informative and may give you some hope. I can forward you

the addresses if you like.

Regards, Sue Zorn

From: Lana Jarvis

Sent: Tuesday, September 13, 2011 12:18 AM

Scoliosis Treatment

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

I'm sorry, Terri. While this surgeon is afraid to operate on you, another would

not be. We have a surgeon here who operates on older people with lots of

success. So, these doctors are around. I hope you can find one that will give

you relief.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

Hi Randie,

What was this amazing program that helped you strengthen your atrophied muscles?

Thanks!

M.

________________________________

From: Randie Meyer <taknitlite@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 7:07:14 PM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

When I had my " big " surgery done, from T4-L5, my surgeon wouldn't do it until

I'd been off morphine for at least a month. This was mainly due to the concern

about pain control after surgery. So I not only got off the meds, I also found

an amazing program that helped me strengthen muscles that had atrophied over the

years. I was 48. Even tho I was in quite good health then for the surgery, I

didn't fuse completely and the rods broke. I then had to have 3 more revision

surgeries and now I'm on more meds than ever and still in a great deal of pain.

On top of it, I can't move as well as before I was fused so it's much more

difficult to exercise.

I think it makes sense that with all your health problems a surgeon wouldn't

want to operate. For each of my surgeries, I was told that in spite of the

risks, my odds of success were greater than 50%. I was told if that wasn't the

case the surgery would not be recommended.

I sympathize with your pain and limitations. Unfortunately, surgery is not

always the answer.

________________________________

From: Lana Jarvis <fyfer1949@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 10:18 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

I'm sorry, Terri.  While this surgeon is afraid to operate on you, another

would not be.  We have a surgeon here who operates on older people with lots of

success.  So, these doctors are around.  I hope you can find one that will

give you relief. And once you've done it there's no going back. It's a huge,

life altering surgery. If I had it to do over, I'd still have had it, but I'd

have waited until I was even stronger than I was, and I would have taken even

better care of myself afterward. If I couldn't have achieved that, I would've

opted not to have had surgery.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

 

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

Sue, can you please provide the names of the three scoliosis surgeons at

Washington University in St Louis who you say specialize in severe

deformities?

Pearl

[Guest guest]

It's called Evolution Spine and Exercise Clinic. Unfortunately they're based in

the Madison/Milwaukee WI area and never expanded. There are probably other

places that have similar equipment but I've never found one. I live in NM now.

What they do is use a computerized machine that somehow immobilizes the pelvis

in such a way that forces the atrophied back muscles to start doing there job.

It measures the percentage of how much you're back muscles are working. There

are also machines that exercise the neck, abs, arms, legs...basically every set

of muscles, and it's all computerized so we can see just how much the muscles

are improving. At the start of my program I was on morphine and having terrible

pain in my lower region. In the beginning my pain increased as those muscles

started working. After 2 weeks/4 sessions I was able to go off the meds and by 2

months I was buff! It was an amazing feeling. I had always been active in spite

of the pain but

apparently my body had adjusted in such a way that some of my muscles did all

the work while others didn't work at all, hence all my soreness.

I did this after being fused just at the L4-L5 area. After my T4-L4 surgery I

never went back because I moved away.

________________________________

From: L M <mariconda_l@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Tuesday, September 13, 2011 7:47 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

Hi Randie,

What was this amazing program that helped you strengthen your atrophied muscles?

Thanks!

M.

________________________________

From: Randie Meyer <taknitlite@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 7:07:14 PM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

When I had my " big " surgery done, from T4-L5, my surgeon wouldn't do it until

I'd been off morphine for at least a month. This was mainly due to the concern

about pain control after surgery. So I not only got off the meds, I also found

an amazing program that helped me strengthen muscles that had atrophied over the

years. I was 48. Even tho I was in quite good health then for the surgery, I

didn't fuse completely and the rods broke. I then had to have 3 more revision

surgeries and now I'm on more meds than ever and still in a great deal of pain.

On top of it, I can't move as well as before I was fused so it's much more

difficult to exercise.

I think it makes sense that with all your health problems a surgeon wouldn't

want to operate. For each of my surgeries, I was told that in spite of the

risks, my odds of success were greater than 50%. I was told if that wasn't the

case the surgery would not be recommended.

I sympathize with your pain and limitations. Unfortunately, surgery is not

always the answer.

________________________________

From: Lana Jarvis <fyfer1949@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 10:18 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

I'm sorry, Terri.  While this surgeon is afraid to operate on you, another

would not be.  We have a surgeon here who operates on older people with lots of

success.  So, these doctors are around.  I hope you can find one that will

give you relief. And once you've done it there's no going back. It's a huge,

life altering surgery. If I had it to do over, I'd still have had it, but I'd

have waited until I was even stronger than I was, and I would have taken even

better care of myself afterward. If I couldn't have achieved that, I would've

opted not to have had surgery.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

 

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

That sounds really fascinating!  Thank you for sharing this info.  Something

new to investigate.

M.

________________________________

From: Randie Meyer <taknitlite@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Wednesday, September 14, 2011 6:54:06 PM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

It's called Evolution Spine and Exercise Clinic. Unfortunately they're based in

the Madison/Milwaukee WI area and never expanded. There are probably other

places that have similar equipment but I've never found one. I live in NM now.

What they do is use a computerized machine that somehow immobilizes the pelvis

in such a way that forces the atrophied back muscles to start doing there job.

It measures the percentage of how much you're back muscles are working. There

are also machines that exercise the neck, abs, arms, legs...basically every set

of muscles, and it's all computerized so we can see just how much the muscles

are improving. At the start of my program I was on morphine and having terrible

pain in my lower region. In the beginning my pain increased as those muscles

started working. After 2 weeks/4 sessions I was able to go off the meds and by 2

months I was buff! It was an amazing feeling. I had always been active in spite

of the pain but

apparently my body had adjusted in such a way that some of my muscles did all

the work while others didn't work at all, hence all my soreness.

I did this after being fused just at the L4-L5 area. After my T4-L4 surgery I

never went back because I moved away.

________________________________

From: L M <mariconda_l@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Tuesday, September 13, 2011 7:47 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

Hi Randie,

What was this amazing program that helped you strengthen your atrophied muscles?

Thanks!

M.

________________________________

From: Randie Meyer <taknitlite@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 7:07:14 PM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

When I had my " big " surgery done, from T4-L5, my surgeon wouldn't do it until

I'd been off morphine for at least a month. This was mainly due to the concern

about pain control after surgery. So I not only got off the meds, I also found

an amazing program that helped me strengthen muscles that had atrophied over the

years. I was 48. Even tho I was in quite good health then for the surgery, I

didn't fuse completely and the rods broke. I then had to have 3 more revision

surgeries and now I'm on more meds than ever and still in a great deal of pain.

On top of it, I can't move as well as before I was fused so it's much more

difficult to exercise.

I think it makes sense that with all your health problems a surgeon wouldn't

want to operate. For each of my surgeries, I was told that in spite of the

risks, my odds of success were greater than 50%. I was told if that wasn't the

case the surgery would not be recommended.

I sympathize with your pain and limitations. Unfortunately, surgery is not

always the answer.

________________________________

From: Lana Jarvis <fyfer1949@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 10:18 AM

Subject: Re: Re: New with lots of questions: Not for the

faint of heart

 

I'm sorry, Terri.  While this surgeon is afraid to operate on you, another

would not be.  We have a surgeon here who operates on older people with lots of

success.  So, these doctors are around.  I hope you can find one that will

give you relief. And once you've done it there's no going back. It's a huge,

life altering surgery. If I had it to do over, I'd still have had it, but I'd

have waited until I was even stronger than I was, and I would have taken even

better care of myself afterward. If I couldn't have achieved that, I would've

opted not to have had surgery.

Lj

From: Terri Bradley <tbradley36@...>

" Scoliosis Treatment " <Scoliosis Treatment >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: New with lots of questions: Not for the faint

of heart

 

This is awful knowing that young bodies are going down this awful pain ridden

path. I am 69 & have scoliosis as I wrote a few months ago. I was supposed to

have surgery for it & have waited 3 years for the operation only to be told by

the surgeon that my condition has deteriorated to such a point he does not now

want to touch it. If I want it done I have to ask him to do it & be ready to

accept any consequence that may come from it going wrong. This is due to the

fact in the last 3 years since he first said he would do it (even though it was

only going to help relieve the sciatica pain in the leg & not the pain in the

back) my other conditions have deteriorated also. I have osteoporosis,

osteoarthritis, chronic disc degeneration, spondylithesis, fibromyalgia,

spondylitis, arachnoiditis, prolapsed discs, sweets syndrome along with the

scoliosis and a few other things not related to the spine. The pain has been

intense for years & I am on the highest

amount of morphine I can take along with other pain killers & drugs. I did

consider having it done but have now decided it is not worth the risk for an op

that is only possibly going to help 50% of the pain.I broke my ankle earlier

this year so had a taste of not being able to drive & I did not enjoy that one

bit. I was in a part time relationship, we did not live with each other but

spent weekends together. He was looking after me when I broke my foot but

suddenly up & left with no explanation part way through his so called caring.

That did not help me one bit.

I have had several heart related attacks this last year & am now looking at

surgery for that. It just doesn't end. Many times lately I have considered

saying goodbye due to the fact my life is nearing the end anyway & the thought

of having to spend it with this amount of pain & I am gradually losing my

mobility which I treasure as I have always been active, it is beginning to scare

me. It takes me all my time, in heaps of pain to walk 50 yards down the road,

whereas just last year I could walk a lot further. Probably breaking my foot

hasn't helped with that. I keep active doing volunteer work but once I lose my

mobility & cannot drive anymore I will be stuck, as where I live in Australia

public transport is not very good, so I couldn't get to those places very

easily. I value my mobility greatly as I am not a person to sit & watch TV.

Never have been.

So I do hope you find an answer for your daughter & it works out well for her.

Shift heaven & earth if you have to as this is a serious condition. Everyone on

here is advising the same thing & I know they will all wish you the best as I do

to find the answer for your dear girl. This seems to have turned into a book so

I will stop now. Good luck in your quest.

[Guest guest]

HI Pearl -

You can go to the website wuphysicians.wustl.edu and follow links to

directory..........type in Orthopedics and Spine Surgery - Orthopedics. There

are several Doctors listed with complete bio of each.

Good Luck! Sue

From: Pearl Fleischmann

Sent: Wednesday, September 14, 2011 10:19 PM

Scoliosis Treatment

Subject: Re: New with lots of questions: Not for the faint

of heart

Sue, can you please provide the names of the three scoliosis surgeons at

Washington University in St Louis who you say specialize in severe

deformities?

Pearl