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I think my “stretching” or

traction was done at a slower rate than yours – but inevitably it was the

same kind of thing! I was not allowed to stand up and after the 10 days (in

the hospital) and I was put in a cast. The Harrington Rod Surgery was then

performed and I was placed back in the cast. I still wasn’t allowed to

stand up because I had a knee surgery to stop the growth in my right leg. My

left leg was shorter at that time because of hip displasia and Dr. Levine

wanted my left leg to grow more to meet up with my right – so much at the

age of 12! Finally I was put on a tilt table and stood up after about 30 days.

Lorrie Snyder

From:

[mailto: ] On Behalf Of Martha Gilliam

Sent: Saturday, July 22, 2006

10:57 AM

To:

Subject: [ ]

stretching treatments - not traction. Did anyone else have this

Lorrie, I

didn't have traction with the weights, though I saw plenty of it in the

" Crippled Children's Hospital " in Richmond, VA. These

were truly stretching treatments. They hooked my head up on one end, my

hips up on the other, and cranked them apart continually asking if I had

feeling in my lower extremities. It was done in brief time period - maybe

over an hour - true stretching of the spine. Once I was stretched

beyond the point of begging (once I passed out) they stopped and wrapped me in

a full body cast. I was left flat until the cast was completely dry -

they would xray me once after the treatment and record how many degrees of

correction they had received in this treatment. Days later , after the

cast was dry, I was xrayed upright, and every time they said I had

" lost " all the correction. They did this 7 times. They

said my spine was very " rigid. " After the seventh time, my

parents could not tak it anymore and took me out of that place and switched to Duke University

where I had the surgery using the Harrington Rod. I was 10 - almost

11. At Duke, Dr. Bassett said they no longer did those stretching

treatments - he said they were brutal and he'd seen one kid " turn

blue. " It was absolutely medieval.

Lorrie Snyder

<Lorriesnyder@...> wrote:

Dear Martha – I too remember the

“stretching” treatments. They called it

“traction” for me. I remember it pulled me from the hips,

head and tried to pull my curve over to the left – every couple of days

the weights were increased. I was in traction for 10 days before the

surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From:

[mailto: ] On

Behalf Of marthalsiii

Sent: Friday, July 21, 2006 6:40

PM

To:

Subject: [ ] I set

a date for revision.

Dear all,

I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX.

He is

really wonderful and so is his staff. I set a date for the revision

surgery. My husband and I will fly there the 20th of September and

the surgery will be on the following Monday which is the 25th of

September. I am a nervous wreck, though. I keep thinking that I am

not that bad off yet. I can't do what I used to, like a trip to

Bush

Gardens

with my 10 year old for the day really hurts and I quit

my teaching job because I couldn't stand for more than 10 minutes

without pain. I hope this back-pedaling is normal. I just worry

that the surgery could make me worse off. I do not hurt all of the

time, but I am definitely not able to do what I want to do. I lean

forward a bit, and there is a visable fracture below the fusion. I

am so afraid, though. I cried in Dr. LaGrone's office.....maybe it

is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 " stretching treatments " which were

like the medieval torture stretching treatments. They stretched me

out on a rack - one time I passed out from the pain- I had to be

awake so they could make sure no spinal damage was done, and they

put a pusher-pad in on one of my shoulder blades, wrapped a full-

body cast around me and I had to wait for days until my cast dried.

One time, I complained about the pusher pad hurting, and the doctor

told my parents that it was supposed to hurt and I was just

spoiled. Later that week, the smell of rotting flesh coming from my

cast let them know that the pusher pad had dug into my flesh. These

stretching treatments were done in Richmond - a young resident named

Talmus (sp?) Bright was in charge and he was the most unfeeling

individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original

deformity. I really think I have post-truamatic stress syndrome

from all of this - I couldn't even speak about it for years. I just

seem paralyzed with fear and worry. Is this normal? Dr. LaGrone

said that I can never hope to be pain-free just because we flat-

backers shouldn't expect that. I was pain free for many years,

though, after the Harrington rod surgery when my parents finally

realized that the " treatments " in Richmond

were just not working and

took me to Duke

University.

Dr. LaGrone said he has done about 90

of the revision surgeries and only one or two say they have no pain

at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best

results. I wish God would just heal us miraculously. When I was a

child, I prayed that God would heal me. During those stretching

treatments, I prayed that God would let me die, and I really

believed he would be merciful and let me die. He did not,

fortunately. Yet, even now, I lean on God, but I don't hear any

clear direction. So many of my friends, family and church family

are praying for me. It is just a road I do not want to travel -

this surgery and this pain. I was fused when I was 10.....so the

seats on the planes don't fit me. What serves as a head rest for

the rest of the world just hits me at the top of my head and pushes

my head forward - I have the trunk length of a 10 year old. I feel

really pissy about all of this crying and moaning when there are so

many worse off. I am just a mess at the present time, but - I have

a date set, so it is going to happen!

Martha Anne

__________________________________________________

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Lorrie, I found out what my treatment was - , founder of the feisty-scolioflatbackers went to the same place, Crippled Children's Hospital in Richmond, and had the same treatment on a "Risser Table." - being stretched and put in a "risser jacket." She hated it too. She saw my post and emailed me. That sounds perfectly awful, what you went through with the knee surgery on top of everything! Is Dr. Levine the one who does revision surgery now? was encouraging in that she can attest to the fact that the revision surgery is not as bad as what we all remember as children! At least, I feel much better after hearing that. I was flat for 6 months after the surgery and used a tilt table too, to get used to being upright again. One thing good that came out of being flat for 6 months is that my fusion was and is rock solid. It is amazing to me that they are not

even using the braces or casts now after revision, and patients are up and walking right after the surgery...I had to "learn" to walk again after six months of being flat.Lorrie Snyder <Lorriesnyder@...> wrote: I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and

after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days. Lorrie Snyder From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was

dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote: Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night – Lorrie Snyder From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision. Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo,

TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to

some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When

I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha Anne __________________________________________________

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Oh Lorrie! I so remember what you're describing at Hospital for Special Surgery! (minus the leg surgery). Thank goodness those days are over, and the scoliosis surgeries done today are done differently and hopefully much more effectively. Hope you're feeling better each day. etteLorrie Snyder <Lorriesnyder@...> wrote: I think my “stretching”

or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days. Lorrie Snyder From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching

treatments - not traction. Did anyone else have this Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would

xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote:

Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night – Lorrie Snyder From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision. Dear all,I flew from

Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture

below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus

(sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it

is going to happen!Martha Anne __________________________________________________

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Martha, I had the Risser table stretching and cast also. They only did it once, about a week before my surgery with Harrington rod, 1971. My half-sister Patty went through a number of Rissers before her non-instrumented surgery, 1968. It was indeed brutal. I felt something tear in my ribs on the left -- felt like someone stuck a hot poker in me. I can't imagine you were actually able to beg! My jaw was clamped so tight I couldn't even scream. They didn't try to stretch me very straight because I have a congenital curvature, which means some of my vertebrae are deformed and caused me to be born with scoliosis. They corrected me from 74 degrees to about 50, but after I was through surgery and upright I was up to about 60 degrees.

Sharon

RE: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I found out what my treatment was - , founder of the feisty-scolioflatbackers went to the same place, Crippled Children's Hospital in Richmond, and had the same treatment on a "Risser Table." - being stretched and put in a "risser jacket." She hated it too. She saw my post and emailed me.

That sounds perfectly awful, what you went through with the knee surgery on top of everything! Is Dr. Levine the one who does revision surgery now? was encouraging in that she can attest to the fact that the revision surgery is not as bad as what we all remember as children! At least, I feel much better after hearing that. I was flat for 6 months after the surgery and used a tilt table too, to get used to being upright again. One thing good that came out of being flat for 6 months is that my fusion was and is rock solid. It is amazing to me that they are not even using the braces or casts now after revision, and patients are up and walking right after the surgery...I had to "learn" to walk again after six months of being flat.Lorrie Snyder <Lorriesnyder@...> wrote:

I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote:

Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision.

Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha Anne

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Hi Martha – I guess it was called a

Risser Table – it was set up all around my hospital bed – slings and

pullies. No Dr.

Levine is not the one who does revision surgery now. He is retired. I think

he still has an office around the Hospital for Special Surgery. Dr. Boachie

retrieved all my old x-rays from Dr. Levine and Dr. Boachie told me he spoke to

Dr. Levine about me. Dr. Levine heads up an alumni association for all the

former staff of the Hospital for Special Surgery.

I too had to lie down for about 4 months

after my surgery. I think I was allowed to eat sitting up and to go to the

bathroom. I remember being home schooled and lying on a chase lounge (from the

patio) in our living room while the teachers came in to teach me.

Lorrie Snyder

From:

[mailto: ] On Behalf Of Martha Gilliam

Sent: Saturday, July 22, 2006 3:20

PM

To:

Subject: RE: [ ]

stretching treatments - not traction. Did anyone else have this

Lorrie, I found out what my treatment was -

, founder of the feisty-scolioflatbackers went to the same place,

Crippled Children's Hospital in Richmond, and had the same treatment on a

" Risser Table. " - being stretched and put in a " risser

jacket. " She hated it too. She saw my post and emailed me.

That sounds perfectly awful, what you went through with the knee

surgery on top of everything! Is Dr. Levine the one who does revision

surgery now?

was encouraging in that she can attest to the fact that the revision surgery is

not as bad as what we all remember as children! At least, I feel much

better after hearing that. I was flat for 6 months after the surgery and

used a tilt table too, to get used to being upright again. One thing good

that came out of being flat for 6 months is that my fusion was and is rock

solid. It is amazing to me that they are not even using the braces or

casts now after revision, and patients are up and walking right after the

surgery...I had to " learn " to walk again after six months of being

flat.

Lorrie Snyder

<Lorriesnyder@...> wrote:

I think my “stretching” or

traction was done at a slower rate than yours – but inevitably it was the

same kind of thing! I was not allowed to stand up and after the 10 days

(in the hospital) and I was put in a cast. The Harrington Rod Surgery was

then performed and I was placed back in the cast. I still wasn’t

allowed to stand up because I had a knee surgery to stop the growth in my right

leg. My left leg was shorter at that time because of hip displasia and

Dr. Levine wanted my left leg to grow more to meet up with my right – so

much at the age of 12! Finally I was put on a tilt table and stood up

after about 30 days.

Lorrie Snyder

From:

[mailto: ] On Behalf Of Martha Gilliam

Sent: Saturday, July 22, 2006

10:57 AM

To:

Subject: [ ]

stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of

it in the " Crippled Children's Hospital " in Richmond, VA. These

were truly stretching treatments. They hooked my head up on one end, my

hips up on the other, and cranked them apart continually asking if I had

feeling in my lower extremities. It was done in brief time period - maybe

over an hour - true stretching of the spine. Once I was stretched

beyond the point of begging (once I passed out) they stopped and wrapped me in

a full body cast. I was left flat until the cast was completely dry -

they would xray me once after the treatment and record how many degrees of

correction they had received in this treatment. Days later , after the

cast was dry, I was xrayed upright, and every time they said I had

" lost " all the correction. They did this 7 times. They

said my spine was very " rigid. " After the seventh time, my

parents could not tak it anymore and took me out of that place and switched to Duke University where I had the

surgery using the Harrington Rod. I was 10 - almost 11. At Duke,

Dr. Bassett said they no longer did those stretching treatments - he said

they were brutal and he'd seen one kid " turn blue. " It was

absolutely medieval.

Lorrie Snyder

<Lorriesnyder@...> wrote:

Dear Martha – I too remember the

“stretching” treatments. They called it

“traction” for me. I remember it pulled me from the hips,

head and tried to pull my curve over to the left – every couple of days

the weights were increased. I was in traction for 10 days before the

surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From:

[mailto: ] On Behalf Of marthalsiii

Sent: Friday, July 21, 2006 6:40

PM

To:

Subject: [ ] I set

a date for revision.

Dear all,

I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is

really wonderful and so is his staff. I set a date for the revision

surgery. My husband and I will fly there the 20th of September and

the surgery will be on the following Monday which is the 25th of

September. I am a nervous wreck, though. I keep thinking that I am

not that bad off yet. I can't do what I used to, like a trip to

Bush

Gardens

with my 10 year old for the day really hurts and I quit

my teaching job because I couldn't stand for more than 10 minutes

without pain. I hope this back-pedaling is normal. I just worry

that the surgery could make me worse off. I do not hurt all of the

time, but I am definitely not able to do what I want to do. I lean

forward a bit, and there is a visable fracture below the fusion. I

am so afraid, though. I cried in Dr. LaGrone's office.....maybe it

is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 " stretching treatments " which were

like the medieval torture stretching treatments. They stretched me

out on a rack - one time I passed out from the pain- I had to be

awake so they could make sure no spinal damage was done, and they

put a pusher-pad in on one of my shoulder blades, wrapped a full-

body cast around me and I had to wait for days until my cast dried.

One time, I complained about the pusher pad hurting, and the doctor

told my parents that it was supposed to hurt and I was just

spoiled. Later that week, the smell of rotting flesh coming from my

cast let them know that the pusher pad had dug into my flesh. These

stretching treatments were done in Richmond - a young

resident named

Talmus (sp?) Bright was in charge and he was the most unfeeling

individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original

deformity. I really think I have post-truamatic stress syndrome

from all of this - I couldn't even speak about it for years. I just

seem paralyzed with fear and worry. Is this normal? Dr. LaGrone

said that I can never hope to be pain-free just because we flat-

backers shouldn't expect that. I was pain free for many years,

though, after the Harrington rod surgery when my parents finally

realized that the " treatments " in Richmond

were just not working and

took me to Duke

University.

Dr. LaGrone said he has done about 90

of the revision surgeries and only one or two say they have no pain

at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best

results. I wish God would just heal us miraculously. When I was a

child, I prayed that God would heal me. During those stretching

treatments, I prayed that God would let me die, and I really

believed he would be merciful and let me die. He did not,

fortunately. Yet, even now, I lean on God, but I don't hear any

clear direction. So many of my friends, family and church family

are praying for me. It is just a road I do not want to travel -

this surgery and this pain. I was fused when I was 10.....so the

seats on the planes don't fit me. What serves as a head rest for

the rest of the world just hits me at the top of my head and pushes

my head forward - I have the trunk length of a 10 year old. I feel

really pissy about all of this crying and moaning when there are so

many worse off. I am just a mess at the present time, but - I have

a date set, so it is going to happen!

Martha Anne

__________________________________________________

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Share on other sites

Guest guest

Hi ette – thanks for writing to

me.  I am doing better.  I still feel like a cobra is squeezing me around my

rib cage and when I get tired or stressed during the day I have to take an

oxycodone.  It still hurts to breathe in full breaths.  I’m seeing Dr.

Boachie this coming Friday. 

Lorrie

From:

[mailto: ] On Behalf Of paulette poirier

Sent: Saturday, July 22, 2006 4:16

PM

To:

Subject: RE: [ ]

stretching treatments - not traction. Did anyone else have this

Oh

Lorrie! I so remember what you're describing at Hospital for Special

Surgery! (minus the leg surgery). Thank goodness those days are

over, and the scoliosis surgeries done today are done differently and hopefully

much more effectively. Hope you're feeling better each day.

ette

Lorrie Snyder

<Lorriesnyder@...> wrote:

I think my “stretching” or

traction was done at a slower rate than yours – but inevitably it was the

same kind of thing! I was not allowed to stand up and after the 10 days

(in the hospital) and I was put in a cast. The Harrington Rod Surgery was

then performed and I was placed back in the cast. I still wasn’t

allowed to stand up because I had a knee surgery to stop the growth in my right

leg. My left leg was shorter at that time because of hip displasia and

Dr. Levine wanted my left leg to grow more to meet up with my right – so

much at the age of 12! Finally I was put on a tilt table and stood up

after about 30 days.

Lorrie Snyder

From:

[mailto: ] On Behalf Of Martha Gilliam

Sent: Saturday, July 22, 2006

10:57 AM

To:

Subject: [ ]

stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of

it in the " Crippled Children's Hospital " in Richmond, VA. These

were truly stretching treatments. They hooked my head up on one end, my

hips up on the other, and cranked them apart continually asking if I had

feeling in my lower extremities. It was done in brief time period - maybe

over an hour - true stretching of the spine. Once I was stretched

beyond the point of begging (once I passed out) they stopped and wrapped me in

a full body cast. I was left flat until the cast was completely dry -

they would xray me once after the treatment and record how many degrees of

correction they had received in this treatment. Days later , after the

cast was dry, I was xrayed upright, and every time they said I had

" lost " all the correction. They did this 7 times. They

said my spine was very " rigid. " After the seventh time, my

parents could not tak it anymore and took me out of that place and switched to Duke University where I had the

surgery using the Harrington Rod. I was 10 - almost 11. At Duke,

Dr. Bassett said they no longer did those stretching treatments - he said

they were brutal and he'd seen one kid " turn blue. " It was

absolutely medieval.

Lorrie Snyder

<Lorriesnyder@...> wrote:

Dear Martha – I too remember the

“stretching” treatments. They called it

“traction” for me. I remember it pulled me from the hips,

head and tried to pull my curve over to the left – every couple of days

the weights were increased. I was in traction for 10 days before the

surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From:

[mailto: ] On Behalf Of marthalsiii

Sent: Friday, July 21, 2006 6:40 PM

To:

Subject: [ ] I set

a date for revision.

Dear all,

I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is

really wonderful and so is his staff. I set a date for the revision

surgery. My husband and I will fly there the 20th of September and

the surgery will be on the following Monday which is the 25th of

September. I am a nervous wreck, though. I keep thinking that I am

not that bad off yet. I can't do what I used to, like a trip to

Bush

Gardens

with my 10 year old for the day really hurts and I quit

my teaching job because I couldn't stand for more than 10 minutes

without pain. I hope this back-pedaling is normal. I just worry

that the surgery could make me worse off. I do not hurt all of the

time, but I am definitely not able to do what I want to do. I lean

forward a bit, and there is a visable fracture below the fusion. I

am so afraid, though. I cried in Dr. LaGrone's office.....maybe it

is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 " stretching treatments " which were

like the medieval torture stretching treatments. They stretched me

out on a rack - one time I passed out from the pain- I had to be

awake so they could make sure no spinal damage was done, and they

put a pusher-pad in on one of my shoulder blades, wrapped a full-

body cast around me and I had to wait for days until my cast dried.

One time, I complained about the pusher pad hurting, and the doctor

told my parents that it was supposed to hurt and I was just

spoiled. Later that week, the smell of rotting flesh coming from my

cast let them know that the pusher pad had dug into my flesh. These

stretching treatments were done in Richmond - a young

resident named

Talmus (sp?) Bright was in charge and he was the most unfeeling

individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original

deformity. I really think I have post-truamatic stress syndrome

from all of this - I couldn't even speak about it for years. I just

seem paralyzed with fear and worry. Is this normal? Dr. LaGrone

said that I can never hope to be pain-free just because we flat-

backers shouldn't expect that. I was pain free for many years,

though, after the Harrington rod surgery when my parents finally

realized that the " treatments " in Richmond

were just not working and

took me to Duke

University.

Dr. LaGrone said he has done about 90

of the revision surgeries and only one or two say they have no pain

at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best

results. I wish God would just heal us miraculously. When I was a

child, I prayed that God would heal me. During those stretching

treatments, I prayed that God would let me die, and I really

believed he would be merciful and let me die. He did not,

fortunately. Yet, even now, I lean on God, but I don't hear any

clear direction. So many of my friends, family and church family

are praying for me. It is just a road I do not want to travel -

this surgery and this pain. I was fused when I was 10.....so the

seats on the planes don't fit me. What serves as a head rest for

the rest of the world just hits me at the top of my head and pushes

my head forward - I have the trunk length of a 10 year old. I feel

really pissy about all of this crying and moaning when there are so

many worse off. I am just a mess at the present time, but - I have

a date set, so it is going to happen!

Martha Anne

__________________________________________________

Link to comment
Share on other sites

Guest guest

Hi Lorrie,

I noticed a year or two ago that Dr. Levine has an office within Dr. Boachie's suite of offices.

Bonnie

RE: [ ] stretching treatments - not traction. Did anyone else have this

Hi Martha – I guess it was called a Risser Table – it was set up all around my hospital bed – slings and pullies. No Dr. Levine is not the one who does revision surgery now. He is retired. I think he still has an office around the Hospital for Special Surgery. Dr. Boachie retrieved all my old x-rays from Dr. Levine and Dr. Boachie told me he spoke to Dr. Levine about me. Dr. Levine heads up an alumni association for all the former staff of the Hospital for Special Surgery.

I too had to lie down for about 4 months after my surgery. I think I was allowed to eat sitting up and to go to the bathroom. I remember being home schooled and lying on a chase lounge (from the patio) in our living room while the teachers came in to teach me.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 3:20 PM Subject: RE: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I found out what my treatment was - , founder of the feisty-scolioflatbackers went to the same place, Crippled Children's Hospital in Richmond, and had the same treatment on a "Risser Table." - being stretched and put in a "risser jacket." She hated it too. She saw my post and emailed me.

That sounds perfectly awful, what you went through with the knee surgery on top of everything! Is Dr. Levine the one who does revision surgery now? was encouraging in that she can attest to the fact that the revision surgery is not as bad as what we all remember as children! At least, I feel much better after hearing that. I was flat for 6 months after the surgery and used a tilt table too, to get used to being upright again. One thing good that came out of being flat for 6 months is that my fusion was and is rock solid. It is amazing to me that they are not even using the braces or casts now after revision, and patients are up and walking right after the surgery...I had to "learn" to walk again after six months of being flat.Lorrie Snyder <Lorriesnyder@...> wrote:

I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote:

Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision.

Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha Anne

__________________________________________________

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Guest guest

Hi Lorrie,

Send Dr. B a "hello" from me. Maybe you need to see a pulmonary guy given all the pulmonary issues you had in the hospital? Maybe it's something you can ask Dr. Boachie. And good luck with that appointment. Let us know how it goes.

Bonnie

RE: [ ] stretching treatments - not traction. Did anyone else have this

Hi ette – thanks for writing to me. I am doing better. I still feel like a cobra is squeezing me around my rib cage and when I get tired or stressed during the day I have to take an oxycodone. It still hurts to breathe in full breaths. I’m seeing Dr. Boachie this coming Friday.

Lorrie

From: [mailto: ] On Behalf Of paulette poirierSent: Saturday, July 22, 2006 4:16 PM Subject: RE: [ ] stretching treatments - not traction. Did anyone else have this

Oh Lorrie! I so remember what you're describing at Hospital for Special Surgery! (minus the leg surgery). Thank goodness those days are over, and the scoliosis surgeries done today are done differently and hopefully much more effectively. Hope you're feeling better each day. etteLorrie Snyder <Lorriesnyder@...> wrote:

I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote:

Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision.

Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha Anne

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Guest guest

Hi Bonnie – Yes, I thought that is

what I heard that Dr. Levine has an office within Dr. Boachie’s suite.

Lorrie

From:

[mailto: ] On Behalf Of Bonnie

Sent: Sunday, July 23, 2006 7:35

PM

Subject: Re: [ ]

stretching treatments - not traction. Did anyone else have this

Hi Lorrie,

I noticed a year or two ago that Dr. Levine has an office within Dr.

Boachie's suite of offices.

Bonnie

[ ] I set

a date for revision.

Dear all,

I flew from Lynchburg,

VA to see Dr.

LaGrone in Amarillo,

TX.

He is

really wonderful and so is his staff. I set a date for the revision

surgery. My husband and I will fly there the 20th of September and

the surgery will be on the following Monday which is the 25th of

September. I am a nervous wreck, though. I keep thinking that I am

not that bad off yet. I can't do what I used to, like a trip to

Bush

Gardens

with my 10 year old for the day really hurts and I quit

my teaching job because I couldn't stand for more than 10 minutes

without pain. I hope this back-pedaling is normal. I just worry

that the surgery could make me worse off. I do not hurt all of the

time, but I am definitely not able to do what I want to do. I lean

forward a bit, and there is a visable fracture below the fusion. I

am so afraid, though. I cried in Dr. LaGrone's office.....maybe it

is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 " stretching treatments " which were

like the medieval torture stretching treatments. They stretched me

out on a rack - one time I passed out from the pain- I had to be

awake so they could make sure no spinal damage was done, and they

put a pusher-pad in on one of my shoulder blades, wrapped a full-

body cast around me and I had to wait for days until my cast dried.

One time, I complained about the pusher pad hurting, and the doctor

told my parents that it was supposed to hurt and I was just

spoiled. Later that week, the smell of rotting flesh coming from my

cast let them know that the pusher pad had dug into my flesh. These

stretching treatments were done in Richmond

- a young resident named

Talmus (sp?) Bright was in charge and he was the most unfeeling

individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original

deformity. I really think I have post-truamatic stress syndrome

from all of this - I couldn't even speak about it for years. I just

seem paralyzed with fear and worry. Is this normal? Dr. LaGrone

said that I can never hope to be pain-free just because we flat-

backers shouldn't expect that. I was pain free for many years,

though, after the Harrington rod surgery when my parents finally

realized that the " treatments " in Richmond

were just not working and

took me to Duke University.

Dr. LaGrone said he has done about 90

of the revision surgeries and only one or two say they have no pain

at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best

results. I wish God would just heal us miraculously. When I was a

child, I prayed that God would heal me. During those stretching

treatments, I prayed that God would let me die, and I really

believed he would be merciful and let me die. He did not,

fortunately. Yet, even now, I lean on God, but I don't hear any

clear direction. So many of my friends, family and church family

are praying for me. It is just a road I do not want to travel -

this surgery and this pain. I was fused when I was 10.....so the

seats on the planes don't fit me. What serves as a head rest for

the rest of the world just hits me at the top of my head and pushes

my head forward - I have the trunk length of a 10 year old. I feel

really pissy about all of this crying and moaning when there are so

many worse off. I am just a mess at the present time, but - I have

a date set, so it is going to happen!

Martha Anne

__________________________________________________

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Share on other sites

Guest guest

I will pass along the “hello” –

I thought maybe I do need to see a pulmonary or breathing specialist –

maybe some breathing therapy.  My dad actually suggested blowing up balloons –

it is a good idea.

Lorrie

From:

[mailto: ] On Behalf Of Bonnie

Sent: Sunday, July 23, 2006 7:37

PM

To:

Subject: Re: [ ]

stretching treatments - not traction. Did anyone else have this

Hi Lorrie,

Send Dr. B a " hello " from me. Maybe you need to see a

pulmonary guy given all the pulmonary issues you had in the hospital?

Maybe it's something you can ask Dr. Boachie. And good luck with that

appointment. Let us know how it goes.

Bonnie

[ ] I set

a date for revision.

Dear all,

I flew from Lynchburg,

VA to see Dr.

LaGrone in Amarillo,

TX.

He is

really wonderful and so is his staff. I set a date for the revision

surgery. My husband and I will fly there the 20th of September and

the surgery will be on the following Monday which is the 25th of

September. I am a nervous wreck, though. I keep thinking that I am

not that bad off yet. I can't do what I used to, like a trip to

Bush

Gardens

with my 10 year old for the day really hurts and I quit

my teaching job because I couldn't stand for more than 10 minutes

without pain. I hope this back-pedaling is normal. I just worry

that the surgery could make me worse off. I do not hurt all of the

time, but I am definitely not able to do what I want to do. I lean

forward a bit, and there is a visable fracture below the fusion. I

am so afraid, though. I cried in Dr. LaGrone's office.....maybe it

is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 " stretching treatments " which were

like the medieval torture stretching treatments. They stretched me

out on a rack - one time I passed out from the pain- I had to be

awake so they could make sure no spinal damage was done, and they

put a pusher-pad in on one of my shoulder blades, wrapped a full-

body cast around me and I had to wait for days until my cast dried.

One time, I complained about the pusher pad hurting, and the doctor

told my parents that it was supposed to hurt and I was just

spoiled. Later that week, the smell of rotting flesh coming from my

cast let them know that the pusher pad had dug into my flesh. These

stretching treatments were done in Richmond

- a young resident named

Talmus (sp?) Bright was in charge and he was the most unfeeling

individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original

deformity. I really think I have post-truamatic stress syndrome

from all of this - I couldn't even speak about it for years. I just

seem paralyzed with fear and worry. Is this normal? Dr. LaGrone

said that I can never hope to be pain-free just because we flat-

backers shouldn't expect that. I was pain free for many years,

though, after the Harrington rod surgery when my parents finally

realized that the " treatments " in Richmond

were just not working and

took me to Duke University.

Dr. LaGrone said he has done about 90

of the revision surgeries and only one or two say they have no pain

at all, but almost all (with the exception of two) say they are glad

they did it. I wish God would just tell me where to go for the best

results. I wish God would just heal us miraculously. When I was a

child, I prayed that God would heal me. During those stretching

treatments, I prayed that God would let me die, and I really

believed he would be merciful and let me die. He did not,

fortunately. Yet, even now, I lean on God, but I don't hear any

clear direction. So many of my friends, family and church family

are praying for me. It is just a road I do not want to travel -

this surgery and this pain. I was fused when I was 10.....so the

seats on the planes don't fit me. What serves as a head rest for

the rest of the world just hits me at the top of my head and pushes

my head forward - I have the trunk length of a 10 year old. I feel

really pissy about all of this crying and moaning when there are so

many worse off. I am just a mess at the present time, but - I have

a date set, so it is going to happen!

Martha Anne

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Dear Lorrie: You've been through alot, and still very much in the healing stage of things. Don't worry about having to take the meds, you need it. Good luck with your appt. on Friday with Dr. Boachie, and as always, ask alot of questions! Let us know how it goes. ette Lorrie Snyder <Lorriesnyder@...> wrote: Hi ette – thanks for writing to me. I am doing better. I still feel like a cobra is squeezing me around my rib cage and when I get tired or stressed during the day I have to take an oxycodone. It still hurts to breathe in full breaths. I’m seeing Dr. Boachie this coming Friday. Lorrie From: [mailto: ] On Behalf Of paulette poirierSent: Saturday, July 22, 2006 4:16 PM Subject: RE: [ ] stretching treatments - not traction. Did anyone else have this Oh Lorrie! I so remember what you're describing at Hospital for Special Surgery! (minus the leg surgery). Thank goodness those days are over, and the scoliosis surgeries done today are done differently and hopefully much more effectively. Hope you're feeling better each day. etteLorrie Snyder <Lorriesnyder@...> wrote: I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I

was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days. Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this Lorrie, I didn't have traction with the weights, though I saw

plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak

it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote: Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head

and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night – Lorrie Snyder From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision. Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is

his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the

Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I

stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I

wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha

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Lorrie, I don't think your traction was the Risser table. The Risser cast was made on the Risser table, which was cranked up -- no weights. If they had stretched us from wrists and ankles it would have been no different from the medieval rack. I was put back in my hospital bed with the cast on, and the rack and cast were the only traction I had.

Sharon

RE: [ ] stretching treatments - not traction. Did anyone else have this

Hi Martha – I guess it was called a Risser Table – it was set up all around my hospital bed – slings and pullies. No Dr. Levine is not the one who does revision surgery now. He is retired. I think he still has an office around the Hospital for Special Surgery. Dr. Boachie retrieved all my old x-rays from Dr. Levine and Dr. Boachie told me he spoke to Dr. Levine about me. Dr. Levine heads up an alumni association for all the former staff of the Hospital for Special Surgery.

I too had to lie down for about 4 months after my surgery. I think I was allowed to eat sitting up and to go to the bathroom. I remember being home schooled and lying on a chase lounge (from the patio) in our living room while the teachers came in to teach me.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 3:20 PM Subject: RE: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I found out what my treatment was - , founder of the feisty-scolioflatbackers went to the same place, Crippled Children's Hospital in Richmond, and had the same treatment on a "Risser Table." - being stretched and put in a "risser jacket." She hated it too. She saw my post and emailed me.

That sounds perfectly awful, what you went through with the knee surgery on top of everything! Is Dr. Levine the one who does revision surgery now? was encouraging in that she can attest to the fact that the revision surgery is not as bad as what we all remember as children! At least, I feel much better after hearing that. I was flat for 6 months after the surgery and used a tilt table too, to get used to being upright again. One thing good that came out of being flat for 6 months is that my fusion was and is rock solid. It is amazing to me that they are not even using the braces or casts now after revision, and patients are up and walking right after the surgery...I had to "learn" to walk again after six months of being flat.Lorrie Snyder <Lorriesnyder@...> wrote:

I think my “stretching” or traction was done at a slower rate than yours – but inevitably it was the same kind of thing! I was not allowed to stand up and after the 10 days (in the hospital) and I was put in a cast. The Harrington Rod Surgery was then performed and I was placed back in the cast. I still wasn’t allowed to stand up because I had a knee surgery to stop the growth in my right leg. My left leg was shorter at that time because of hip displasia and Dr. Levine wanted my left leg to grow more to meet up with my right – so much at the age of 12! Finally I was put on a tilt table and stood up after about 30 days.

Lorrie Snyder

From: [mailto: ] On Behalf Of Martha GilliamSent: Saturday, July 22, 2006 10:57 AM Subject: [ ] stretching treatments - not traction. Did anyone else have this

Lorrie, I didn't have traction with the weights, though I saw plenty of it in the "Crippled Children's Hospital" in Richmond, VA. These were truly stretching treatments. They hooked my head up on one end, my hips up on the other, and cranked them apart continually asking if I had feeling in my lower extremities. It was done in brief time period - maybe over an hour - true stretching of the spine. Once I was stretched beyond the point of begging (once I passed out) they stopped and wrapped me in a full body cast. I was left flat until the cast was completely dry - they would xray me once after the treatment and record how many degrees of correction they had received in this treatment. Days later , after the cast was dry, I was xrayed upright, and every time they said I had "lost" all the correction. They did this 7 times. They said my spine was very "rigid." After the seventh time, my parents could not tak it anymore and took me out of that place and switched to Duke University where I had the surgery using the Harrington Rod. I was 10 - almost 11. At Duke, Dr. Bassett said they no longer did those stretching treatments - he said they were brutal and he'd seen one kid "turn blue." It was absolutely medieval.Lorrie Snyder <Lorriesnyder@...> wrote:

Dear Martha – I too remember the “stretching” treatments. They called it “traction” for me. I remember it pulled me from the hips, head and tried to pull my curve over to the left – every couple of days the weights were increased. I was in traction for 10 days before the surgery and it was agony – I was 12 years old and cried every night –

Lorrie Snyder

From: [mailto: ] On Behalf Of marthalsiiiSent: Friday, July 21, 2006 6:40 PM Subject: [ ] I set a date for revision.

Dear all,I flew from Lynchburg, VA to see Dr. LaGrone in Amarillo, TX. He is really wonderful and so is his staff. I set a date for the revision surgery. My husband and I will fly there the 20th of September and the surgery will be on the following Monday which is the 25th of September. I am a nervous wreck, though. I keep thinking that I am not that bad off yet. I can't do what I used to, like a trip to Bush Gardens with my 10 year old for the day really hurts and I quit my teaching job because I couldn't stand for more than 10 minutes without pain. I hope this back-pedaling is normal. I just worry that the surgery could make me worse off. I do not hurt all of the time, but I am definitely not able to do what I want to do. I lean forward a bit, and there is a visable fracture below the fusion. I am so afraid, though. I cried in Dr. LaGrone's office.....maybe it is post-traumatic stress to some degree. Before I had the Harrington Rods put in, I had 7 "stretching treatments" which were like the medieval torture stretching treatments. They stretched me out on a rack - one time I passed out from the pain- I had to be awake so they could make sure no spinal damage was done, and they put a pusher-pad in on one of my shoulder blades, wrapped a full-body cast around me and I had to wait for days until my cast dried. One time, I complained about the pusher pad hurting, and the doctor told my parents that it was supposed to hurt and I was just spoiled. Later that week, the smell of rotting flesh coming from my cast let them know that the pusher pad had dug into my flesh. These stretching treatments were done in Richmond - a young resident named Talmus (sp?) Bright was in charge and he was the most unfeeling individual. Every time I had one of these treatments, as soon as I stood up, my rigid spine would go right back to it's original deformity. I really think I have post-truamatic stress syndrome from all of this - I couldn't even speak about it for years. I just seem paralyzed with fear and worry. Is this normal? Dr. LaGrone said that I can never hope to be pain-free just because we flat-backers shouldn't expect that. I was pain free for many years, though, after the Harrington rod surgery when my parents finally realized that the "treatments" in Richmond were just not working and took me to Duke University. Dr. LaGrone said he has done about 90 of the revision surgeries and only one or two say they have no pain at all, but almost all (with the exception of two) say they are glad they did it. I wish God would just tell me where to go for the best results. I wish God would just heal us miraculously. When I was a child, I prayed that God would heal me. During those stretching treatments, I prayed that God would let me die, and I really believed he would be merciful and let me die. He did not, fortunately. Yet, even now, I lean on God, but I don't hear any clear direction. So many of my friends, family and church family are praying for me. It is just a road I do not want to travel - this surgery and this pain. I was fused when I was 10.....so the seats on the planes don't fit me. What serves as a head rest for the rest of the world just hits me at the top of my head and pushes my head forward - I have the trunk length of a 10 year old. I feel really pissy about all of this crying and moaning when there are so many worse off. I am just a mess at the present time, but - I have a date set, so it is going to happen!Martha Anne

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