Re: I set a date for revision.

[Guest guest]

Dear Martha Anne,

It is not unusual when facing revision to relive the painful

memories of the first and or second surgery. It sounds like you

suffered a horrific experience. LaGrone is a good surgeon from what

I hear on this site and you are in safe hands. Gently God seems to

be leading you along. Take care of yourself

>

> 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

>

[Guest guest]

Hi Martha Anne,

It's so scary to set a surgery date. Been there, done that, so I understand. I also still have awful thoughts about my first, Harrington Rod, surgery. Though the revision surgery is no piece of cake to say the least, it's not medieval torture, like surgery, casting and pre-casting traction was in the 70s. Not to mention that today a lot more is understood about pain management. I bet you'll do fine.

So Dr. LaGrone said you shouldn't expect to be pain free after revision surgery. Ok, understood. But did he say what you could expect? How will your life be different after his revision surgery versus the way your life is now? What other docs did you see and why did you chose Dr. LaGrone?

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

[Guest guest]

Martha--I'll probably be saying the same things as you are right now

in a few months. Your post choked me up. Yeah, I wished that God

would have healed me when I was young. But what got me thru that

original surgery 32 years ago was II Cor. 1:3-7. The reason we go

thru these trials and tribulations is to comfort others. That's the

only reason that I have ever come up with thru all these years. I get

depressed sometimes with all my pain and also to think of all I've

missed out on all these years, but I keep telling myself that " God

has a purpose " . Besides, He never promised us a bed of roses here on

earth anyway. Living in this world is a trial in itself. God is the

whole reason I'm still alive today. I thought about committing

suicide many times. But, I had to look beyond myself and my pain to

those around me and how much they need me. Look to God, pray alot,

and He will give you the answers. You'll probably be there for me

down the road as well as many others on this site will be for both of

us in the future.

Carol V (CA)

>

> 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

>

[Guest guest]

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

[Guest guest]

Martha Ann,

It is strange how when it all clicks it just feels right. I think

you are in very good hands with DrLaGrone and will find a way to

manage the travel. I know it won't be easy, but I think we all feel

more fragile than we actually are when they give us the boot out of

the hosptial.

I think drRand said he even shys away from insisting on bracing

after revision becasue he recognizes how traumatic the experience

was for many of us....so please don't feel like you are the lone

ranger on that feeling....I think it would be abnormal not to have

post traumatic stress after what we underwent as vulnerable little

children. Yee gads....there we were....trusting little children who,

at least psychologically speaking, were tortured at the hands of our

doctors while our parents stood by and let it happen. How else could

you or I feel? I just wish the subject really got a little more

attention so that our current feelings could be validated by the

medical community. Your post captured the feeling of vulnerability

and panic I experienced exactly

You said Dr. LaGrone said that you can never hope to be pain-free

just because we flat-backers shouldn't expect that...but I think

even though that is the realistic expecation you should have...there

is reason to hope for some painfree days. True, there doesn't seem

to be any magic bullet...but you may be one of the ones that pulls

the long straw...so go ahead and hope for the best and plan for the

worst.

Anyway...congrats on your decision and when you get dates let me

know so I can put you on the calender.

Take Care, Cam

[Guest guest]

ette, I have "followed" your emails and it really helps! Do you have pain? Constant pain is what I hope not to have. Occasional manageable pain is fine. I had so hoped to be "pain-free." Thanks for the encouragement! Glad you are doing so well. Did you have the two long bolts or screws in the pelvic wings for stability and do they hurt? Martha Annepaulette poirier <paulettep11@...> wrote: Dear Martha Anne: You are in great hands with Dr. LaGrone and his

very competent assistants, staff, etc. My revision surgery was a little over 2 years ago and I'm doing really great. My age is 56. I understand the post traumatic stress you feel. I went for counseling to talk about that before I had my surgery and I know it helped alot. My very best to you. Take one day at a time. ettemarthalsiii <marthalsiii@...> wrote: 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 Do you ?Get on board. You're invited to try the new Beta. __________________________________________________

[Guest guest]

Hi Martha Anne: I had the iliac screws removed wnen I was 14 months post op. Prior to their removal, those areas felt very sensitive to the touch. I think Dr. LaGrone said 10% to 15% percent of his patients had iliac screws removed(after one year post op, when the fusion is solid.) I have what I call occasional discomfort/soreness (back muscles), if I've overdone things. My leg muscles still feel tight if I don't do my at home PT and walking. So I'm very motivated to keep in shape, and I walk as much as possible. Actually I went hiking in the mountains last weekend for almost 2 hours and felt great (I live in NM)! The pain and fatigue I had before the surgery is completely gone. I tried to get in shape as much as possible before the surgery (core strenghtening and walking as much as possible). When I had my first

scoliosis surgery in the early 70's, I clearly remember alot of pain, etc. One of my fears for this revision was proper pain management. I will say that I was extremely happy with the pain management. It was like night and day for me compared to the 70's! Unlike many folks here, I was in my early 20's when the scoliosis was discovered, and I had 2 young children. I was a dance teacher, and I have no idea when the scoliosis began (was in leotard and tights my whole life, and no one ever noticed curves in spine). I have no family history of scoliosis. Please feel free to ask any questions, as many people here will be able to give their input. Take care. ette Martha Gilliam <marthalsiii@...> wrote: ette, I have "followed" your emails and it really helps! Do you have pain? Constant pain is what I hope not to have. Occasional manageable pain is fine. I had so hoped to be "pain-free." Thanks for the encouragement! Glad you are doing so well. Did you have the two long bolts or screws in the pelvic wings for stability and do they hurt? Martha Annepaulette poirier <paulettep11@...> wrote: Dear Martha

Anne: You are in great hands with Dr. LaGrone and his very competent assistants, staff, etc. My revision surgery was a little over 2 years ago and I'm doing really great. My age is 56. I understand the post traumatic stress you feel. I went for counseling to talk about that before I had my surgery and I know it helped alot. My very best to you. Take one day at a time. ettemarthalsiii <marthalsiii@...> wrote: 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 Do you ?Get on board. You're invited to try the new Beta. __________________________________________________

[Guest guest]

Martha Anne,

Trust your gut. Only you can make the right decision for you. You

narrowed your choice to two excellent surgeons who operate in two

excellent hospitals. So, now you can look at the " icing on the cake "

factors. Those differ for everyone, I believe.

Be proud of yourself for doing your due diligence in making this big

decision. It's a lot of work!

I wish you the very best outcome possible!

kam

>

> Dear Bonnie,

> Thanks for your reply. I saw Dr. Bridwell and another less well-

know Dr. Gelb in land. I actually asked Dr. LaGrone about " pain-

free " after reading so many posts here from folks who have had

revision and still have pain. I felt very comfortable with Dr.

LaGrone. Dr. Bridwell was my other " choice. " I just hope and pray

that I made the right decision. But, I can switch - it's not too

late.

> Martha Anne