Re:It

[Guest guest]

Ladies, I really feel for you. You ladies are incredible souls for taking this and continuing to treat this with surgery. I am still struggling with all of this. I am in my mid 30's. I am headed for the same revision with extensive damage to repair as every person in this group. I read these posts and it seems that with each surgery there comes complications and the need for even more extensive surgery. I find it completely overwhelming and downright depressing. I am on narcs. and have been for 3 years. I just don't want to go through surgery after surgery after surgery. I almost feel trapped and darned if I do and darned if I don't. For me, I am shifting forward and rotating left to right. My right shoulder is shifting forward and I fear that i will have these very same issues as you have described. I

guess, knowing that this is just a bandaid, depressing the heck out of me and I know in time I will need even more surgery!! I don't want more surgery, and I don't want to suffer with no quality of life. My Gosh, what a terrible place to be!! God Bless You and I will pray for you. Maggie.

[Guest guest]

Maggie,

I am not sure exactly what you have been reading here but many of us have not

had surgery after surgery. I myself had a two day surgery, consecutively and

have not had anymore. It seems that those that have to have anterior and

posterior work, have a two day surgery. It is the nature of revision. We mostly

see this as " revision " though sometimes in two parts, not surgeries year after

year. Don't get me wrong, some have had multiples and bless their souls for it.

I understand your depression and how bleak it looks getting to the point where

you decide if revision is the right place for you. Some have had measure of

success with pilates, exercise, pool therapy and are content with it for now.

Does everybody end up with surgical revision, of course not, but for some it is

the only viable solution to gaining back some quality of life. It will take time

but hopefully you can look at your options and begin to formulate a plan. I know

it can be overwhelming but once you get over the initial emotion of it most

bounce back to a place where they can measure their options. I hope you continue

to post as you work your way through it. C

>

> Ladies, I really feel for you. You ladies are incredible souls for taking this

and continuing to treat this with surgery. I am still struggling with all of

this. I am in my mid 30's. I am headed for the same revision with extensive

damage to repair as every person in this group. I read these posts and it seems

that with each surgery there comes complications and the need for even more

extensive surgery. I find it completely overwhelming and downright depressing. I

am on narcs. and have been for 3 years. I just don't want to go through surgery

after surgery after surgery. I almost feel trapped and darned if I do and darned

if I don't. For me, I am shifting forward and rotating left to right. My right

shoulder is shifting forward and I fear that i will have these very same issues

as you have described. I guess, knowing that this is just a bandaid, depressing

the heck out of me and I know in time I will need even more surgery!! I don't

want more surgery,

> and I don't want to suffer with no quality of life. My Gosh, what a terrible

place to be!! God Bless You and I will pray for you.

> Maggie.

>

[Guest guest]

Hi Maggie!

I'm 33 and had revision surgery almost 3 years ago. While I still have some

issues, I feel that the revision really did help take care of the pain issues I

was having beforehand. Please don't assume that you'll need surgery after

surgery! Some people do need more than one revision to get themselves better,

but many people have successful revisions with just one surgery! I had two

surgeries, one week apart for my revision. But it was basically like 1 surgery

- just done in two stages because it would have been too much to do all at once.

I'm curious as to what type of rods you have in your back? What year did you

have your original scoliosis surgery done? While most people on this list have

Harrington rods, many of us " younger " people had one of the next generation

hardware put in. Mine were still referred to as Harrington rods, but they are

actually Luque rods - not true Harringtons.

>

> Ladies, I really feel for you. You ladies are incredible souls for taking this

and continuing to treat this with surgery. I am still struggling with all of

this. I am in my mid 30's. I am headed for the same revision with extensive

damage to repair as every person in this group. I read these posts and it seems

that with each surgery there comes complications and the need for even more

extensive surgery. I find it completely overwhelming and downright depressing. I

am on narcs. and have been for 3 years. I just don't want to go through surgery

after surgery after surgery. I almost feel trapped and darned if I do and darned

if I don't. For me, I am shifting forward and rotating left to right. My right

shoulder is shifting forward and I fear that i will have these very same issues

as you have described. I guess, knowing that this is just a bandaid, depressing

the heck out of me and I know in time I will need even more surgery!! I don't

want more surgery,

> and I don't want to suffer with no quality of life. My Gosh, what a terrible

place to be!! God Bless You and I will pray for you.

> Maggie.

>

[Guest guest]

Thank You . It is the complications that arise from the revision and the need for more surgery that concerns me. My situation is not pretty. I am a young widow with two children and I don't want them to see me suffer through this. It has been a long road for them. I have to have the surgery but I hope to God that I am one of the lucky ones with no surgical complications. I have been in physio for three years. I am trying to rebuild muscles (right now I have no stability and no core) and can fall over without a seconds notice. I don't want to make my kids suffer emotionally anymore. I was hoping this was to be our decade of healing emotionally from the tragic loss of their father and help them move on. I wonder how I do that with the long road to recovery that is ahead for me. With the support of this

group, I know I will get there. My mind races and the journey through this next year seems impossible. I still have to figure out how I will go through it, here, in Toronto, with no family, no friends, and two school age children. God Bless . I cant thank you enough for this post!From: redmarmie <vclark@...> Sent: Thu, March 18, 2010 9:11:05 AMSubject: [ ] Re:It

Maggie,

I am not sure exactly what you have been reading here but many of us have not had surgery after surgery. I myself had a two day surgery, consecutively and have not had anymore. It seems that those that have to have anterior and posterior work, have a two day surgery. It is the nature of revision. We mostly see this as "revision" though sometimes in two parts, not surgeries year after year. Don't get me wrong, some have had multiples and bless their souls for it. I understand your depression and how bleak it looks getting to the point where you decide if revision is the right place for you. Some have had measure of success with pilates, exercise, pool therapy and are content with it for now. Does everybody end up with surgical revision, of course not, but for some it is the only viable solution to gaining back some quality of life. It will take time but hopefully you can look at your options and begin to formulate a plan. I know it can be overwhelming but

once you get over the initial emotion of it most bounce back to a place where they can measure their options. I hope you continue to post as you work your way through it. C

>

> Ladies, I really feel for you. You ladies are incredible souls for taking this and continuing to treat this with surgery. I am still struggling with all of this. I am in my mid 30's. I am headed for the same revision with extensive damage to repair as every person in this group. I read these posts and it seems that with each surgery there comes complications and the need for even more extensive surgery. I find it completely overwhelming and downright depressing. I am on narcs. and have been for 3 years. I just don't want to go through surgery after surgery after surgery. I almost feel trapped and darned if I do and darned if I don't. For me, I am shifting forward and rotating left to right. My right shoulder is shifting forward and I fear that i will have these very same issues as you have described. I guess, knowing that this is just a bandaid, depressing the heck out of me and I know in time I will need even more surgery!! I don't want more

surgery,

> and I don't want to suffer with no quality of life. My Gosh, what a terrible place to be!! God Bless You and I will pray for you.

> Maggie.

>

[Guest guest]

Maggie,

I want to express my condolences on your loss as well. God Bless. C

> >

> > Ladies, I really feel for you. You ladies are incredible souls for taking

this and continuing to treat this with surgery. I am still struggling with all

of this. I am in my mid 30's. I am headed for the same revision with extensive

damage to repair as every person in this group. I read these posts and it seems

that with each surgery there comes complications and the need for even more

extensive surgery. I find it completely overwhelming and downright depressing. I

am on narcs. and have been for 3 years. I just don't want to go through surgery

after surgery after surgery. I almost feel trapped and darned if I do and darned

if I don't. For me, I am shifting forward and rotating left to right. My right

shoulder is shifting forward and I fear that i will have these very same issues

as you have described. I guess, knowing that this is just a bandaid, depressing

the heck out of me and I know in time I will need even more surgery!! I don't

want more surgery,

> > and I don't want to suffer with no quality of life. My Gosh, what a

terrible place to be!! God Bless You and I will pray for you.

> > Maggie.

> >

>

[Guest guest]



Maggie,

I think all this, overwhelming as it seems, comes down to, do I want to stay where I am, and probably continue to worsen, or do I take the bull by the horns and work to find a way to get myself more functional, with less pain, so I can move forward for myself and my family. It really comes down to that. Some it takes a long time to come to that point, others see it as something to get fixed, and do the work to find their way through it. In my years post surgery and my time here, I have seen many women valently struggle to find their way through this, and come out the other side of all it's challenges so much better than where they started from. Is all this perfect, no, we have scoliosis, and from the moment we found we had it, to the degree we all do, we are managing this lifelong condition. So every once and awhile it throws us a curve ball, and we take a bat, and slug our way through it. I'm ever thankful we have the docs that do this work, that amend our crooked spines, and get us functioning again.

I think it's good to be aware of the wide results level that is out there. Some come out of revision better than others, but in all my years on these boards, I've seen only a couple who regreted having the surgery done, and most are thankful, and doing tons better than they were before. So to this I say get to VERY experienced doc's, doing this surgery often, ask to speak to patients of theirs who have had it done.

You are doing work in PT to improve your body, BRAVO. As to your personal life, you will need support through this. Are you able to maybe move closer to family, or are they deceased? Friends, you have to get out and make them. I've moved a lot because of my hubby's work, and have found this tough, especially living in a cold climate where people are indoors so much of the year. I had to make myself go and speak to people, talk to neighbors, volunteer at school, join club like activities( I scrapbook and garden). If you are into politics, get involved. Deepest friends usually have like interests, so develope them. I know when you hurt it's easy to stay at home and let the world become small, but don't let that happen to you or your children.

Surgery is tough, it's tough on kids, but so is a Mom who is in pain, who's movement is limited, and who's world is getting smaller. I had surgery for me, but as who I am, I did it more for my kids and husband, I had to give it a shot, a shot at getting better. I was lucky, I came out of this very well, I'm a functioning ,happy person. The grinding, yucky pain is gone, I'm upright, level, walking, standing, and being out there living.

I'm one of those who has had a few surgeries( 4 total), and while it wasn't ideal, and complicated, I came through it better than I hoped for. I find living in a very fused body spinally to have it's challenges, but overall, I'm so glad I stuck it out, and surgeries for me were very worth it.

I think you should find that we as a commmunity are tough, supportive, and up to the battle. It should also give you comfort, that those that went before you, have had lists of problems both physical and emotional, have had tough circumstances, and have found a way top make it work. You just have to get yourself into work mode, and do what you need to to find your way through this, and we will be here to support you.

Colorado Springs

[ ] Re:It

Maggie,I am not sure exactly what you have been reading here but many of us have not had surgery after surgery. I myself had a two day surgery, consecutively and have not had anymore. It seems that those that have to have anterior and posterior work, have a two day surgery. It is the nature of revision. We mostly see this as "revision" though sometimes in two parts, not surgeries year after year. Don't get me wrong, some have had multiples and bless their souls for it. I understand your depression and how bleak it looks getting to the point where you decide if revision is the right place for you. Some have had measure of success with pilates, exercise, pool therapy and are content with it for now. Does everybody end up with surgical revision, of course not, but for some it is the only viable solution to gaining back some quality of life. It will take time but hopefully you can look at your options and begin to formulate a plan. I know it can be overwhelming but once you get over the initial emotion of it most bounce back to a place where they can measure their options. I hope you continue to post as you work your way through it. C>> Ladies, I really feel for you. You ladies are incredible souls for taking this and continuing to treat this with surgery. I am still struggling with all of this. I am in my mid 30's. I am headed for the same revision with extensive damage to repair as every person in this group. I read these posts and it seems that with each surgery there comes complications and the need for even more extensive surgery. I find it completely overwhelming and downright depressing. I am on narcs. and have been for 3 years. I just don't want to go through surgery after surgery after surgery. I almost feel trapped and darned if I do and darned if I don't. For me, I am shifting forward and rotating left to right. My right shoulder is shifting forward and I fear that i will have these very same issues as you have described. I guess, knowing that this is just a bandaid, depressing the heck out of me and I know in time I will need even more surgery!! I don't want more surgery,> and I don't want to suffer with no quality of life. My Gosh, what a terrible place to be!! God Bless You and I will pray for you. > Maggie.>

[Guest guest]

Hi Maggie,

Well, I wish I could make everybody all better. I wish there was a

simple solution to our problems. But, as you well know, there isn't.

So all we can do is try to get the best available help. The choice is

whether you want to give up and continue to live the way you are now

with an even more diminished lifestyle as time goes by, or go for

revision surgery in the hope that you will be better off and live a

fuller, more satisfying lifestyle. No, the surgery is not perfect,

but I don't now anyone who thinks they were better off before revision

surgery. A pity party, with or without a good cry, is almost bound to

happen from time to time it seems. But it is important to then pick

yourself up, realize how much better off we are today because of

advances in surgery, and look towards a better future.

Bonnie

[Guest guest]

Ouch Maggie,

I hope you take all of our advice with a grain. Everybody is only trying to

help. I can understand you don't want your kids to see or to suffer anymore but

believe me every time you go shopping or walk or lean on something for support,

their hearts break a little more. They are already watching you suffer. My son

was six when I had revision and since the age of two he was a SPED child. He

could barely talk at three so he had lots of therapy. At four and five he used

to walk up to me as I moved around and said Mommy hurts and he would rub my

back. My heart would break! He knew my pain and watched it daily. Now he thinks

nothing of asking to go for a walk or hike. We ride bikes together and play

soccer. None of which I could do prior to revision. Hopefully revision would

allow you to gain back some quality of life and allow you to move and function

somewhat normally for many years to come. That is what most of us were betting

on along with reduction in pain when we decided to move ahead. I tried to

strengthen before revision but I was too late. Any strengthening I would have

done would have reinforced muscles already doing the wrong thing. It not only

was in vain it was counterproductive. I still walked so kept my mobility but

took breaks and leaned on trees to gather the strength to make it around the

block. Making friends is tough at any age at least for me it is. I start with

the parents of my kids friends. After that I went back to church and instead of

being a pew member, I jumped right in with teaching Sunday school to the

teenagers. How's that for a leap of faith? Between the two, I have built many

relationships. One of my son's friends mother is now one of my best friends and

supporter. My mother used to say to me, you want to make friends? Be friendly

and volunteer. Tough advice for a shy little girl but hey! I am getting the hang

of it. Spring is breaking out,even in Toronto, I hope it will help brighten your

spirit. Keep posting! C

>

> Thank You . It is the complications that arise from the revision and

the need for more surgery that concerns me. My situation is not pretty. I am a

young widow with two children and I don't want them to see me suffer through

this. It has been a long road for them. I have to have the surgery but I hope to

God that I am one of the lucky ones with no surgical complications. I have been

in physio for three years. I am trying to rebuild muscles (right now I have no

stability and no core) and can fall over without a seconds notice. I don't want

to make my kids suffer emotionally anymore. I was hoping this was to be our

decade of healing emotionally from the tragic loss of their father and help them

move on. I wonder how I do that with the long road to recovery that is ahead for

me. With the support of this group, I know I will get there. My mind races and

the journey through this next year seems impossible. I still have to figure out

how I will go

> through it, here, in Toronto, with no family, no friends, and two school age

children. God Bless . I cant thank you enough for this post!

>

>

>

>

>

> ________________________________

>