Re: How is Everyone Doing Post-Surgery?/Ann

[Guest guest]

Ann - this board isn't just for people who are doing really well at any

point before or after surgery. In fact, it was established by those of us,

particularly those with Harrington rods and as a result, flatback, who were

having

problems with chronic pain. We thought there were others who might be facing

similar problems alone and needed support. , the group's original

moderator who did the majority of the work putting this group together, has had

numerous surgeries and chronic pain for years. I think you will find this

group is compassionate and many are suffering from chronic unrelenting pain.

You aren't being negative. You are being honest about how pain is affecting

you in your everyday life. It's breaking your heart that you can't do the

things you want to do with your little girl, and that you just don't feel like

it. There were days when my kids were still home (before my fusion surgery in

94) when all I could do was lay on the bed and cry - I wanted to keep going

(which is more my personality), but the pain was so intense I couldn't move.

I think you should trust your instincts though - if you think that

something's wrong; then make sure the doctor listens to you. Are you working

directly

with pain management specialists? In my experience, the experts are more

helpful in their own areas of expertise than the doctor.

Have you tried some of the alternative therapies for relaxation? These are

not going to " cure " anything, but perhaps they can help you relax, take away

some of the stress and feel better.

Jennie

[Guest guest]

- I agree with you 100%. This group is for everyone. That was the

intent of my post. That this group is for people with pain post revision as well

as for people who are doing well. I repeat this group is for everyone, and

there is room for different opinions and of course people have had different

results from their surgeries. I think it's important to hear from everyone who

wants to write about their experiences so others can benefit. That's what I

meant. Perhaps I didn't come across with the message I intended to. If so, I

apologize. Jennie

[Guest guest]

- I agree with you 100%. This group is for everyone. That was the

intent of my post. That this group is for people with pain post revision as well

as for people who are doing well. I repeat this group is for everyone, and

there is room for different opinions and of course people have had different

results from their surgeries. I think it's important to hear from everyone who

wants to write about their experiences so others can benefit. That's what I

meant. Perhaps I didn't come across with the message I intended to. If so, I

apologize. Jennie

[Guest guest]

Dear Feisties,

I had to leave my computer this morning to cool down before I wrote this

message. Some how this group has been divided , why can't there be room here for

people who are doing well post-revision, those who are having difficulties post-

revision, and those who choose not to be revised. I have fallen in one point or

the other into all of these groups and have found comfort from members here. We

can't say you must be doing well because your case must not have been too

complex, or your doing badly because your case was very complex. Anyone with

Flat back has a place here with us and there shouldn't be any judgement about

outcomes, but support.

I chime in to let some new people that there are good outcomes. The tone of the

group sometimes can be dark, and if you were looking in for the first time it

could scare you to death. I know how hard it can be to have setbacks. When my

fusion broke after my first revision, I had terrible waist pain and was so bent

to the right that my ribs were setting on my hip. That was my lowest moment, but

thankfully the second revision got me to the place I am now. I have had four

spinal surgeries,

My original Harrington rod surgery-1973, at UCSF, fused T-5 to L-3, !2 hours,

Decompression surgery for steniosis and Hardware removal, December 2000, St.

Lukes, Denver 6 hours, Revision surgery From the front and back, fused to the

sacrum, cages, screws, bolts and small rods, January 2002, St. Lukes, Denver 12

hours and Revision surgery# 2, Fused T-2 to T-5, repair of cracked fusion,

removal of hardware, replacement hardware stainless steel placed, dramatic

correction achieved of my curve, St. Joesph's Denver, December 2002, 12 hours. I

know what it is to have a ton of surgery, to be in pain, to be depressed about a

bad outcome. I've felt it all. I have a ton of compassion for those who are

struggling, I've been there. But I won't apologize for finally having a good

outcome, I and my doctors have been through too much not to appreciate this gift

I have been given. I also feel that there is a place in the group for all of us,

that maybe my story can give someone a little hope.

As I said in my last post I stay with the group to be of help, it would be easy

to leave since I'm doing well but I stay because the doctors don't know how well

we will all hold up. I may be good for the rest of my life, but I don't count on

it. And if I had a relaspe of some type, I know all of you that went before me

might have advise to get me through. Lets all stop labeling each other, and work

as the group weve always been. No one knows the pain of this syndrome better

than us, and I look forward to helping others and they helping me!

Colorado Springs

Re: Re: How is Everyone Doing Post-Surgery?/Ann

Ann - this board isn't just for people who are doing really well at any

point before or after surgery. In fact, it was established by those of us,

particularly those with Harrington rods and as a result, flatback, who were

having

problems with chronic pain. We thought there were others who might be facing

similar problems alone and needed support. , the group's original

moderator who did the majority of the work putting this group together, has

had

numerous surgeries and chronic pain for years. I think you will find this

group is compassionate and many are suffering from chronic unrelenting pain.

You aren't being negative. You are being honest about how pain is affecting

you in your everyday life. It's breaking your heart that you can't do the

things you want to do with your little girl, and that you just don't feel

like

it. There were days when my kids were still home (before my fusion surgery in

94) when all I could do was lay on the bed and cry - I wanted to keep going

(which is more my personality), but the pain was so intense I couldn't move.

I think you should trust your instincts though - if you think that

something's wrong; then make sure the doctor listens to you. Are you working

directly

with pain management specialists? In my experience, the experts are more

helpful in their own areas of expertise than the doctor.

Have you tried some of the alternative therapies for relaxation? These are

not going to " cure " anything, but perhaps they can help you relax, take away

some of the stress and feel better.

Jennie

[Guest guest]

,

Perhaps I missed something, but I do not see what you found

judgmental. I am not sure anyone was, in fact, judging anyone else.

Jennie's letter, in particular, seems very compassionate and helpful.

Through the years, I have felt that most participants in this group

had an amazingly upbeat and empathic attitude. As noted, most of us

have certainly had our dark times as well. There is plenty of room

for a wide variety of thoughts and emotions here at " Feisty. "

> Dear Feisties,

>

> I had to leave my computer this morning to cool down before I wrote

this message. Some how this group has been divided , why can't there

be room here for people who are doing well post-revision, those who

are having difficulties post- revision, and those who choose not to

be revised. I have fallen in one point or the other into all of these

groups and have found comfort from members here. We can't say you

must be doing well because your case must not have been too complex,

or your doing badly because your case was very complex. Anyone with

Flat back has a place here with us and there shouldn't be any

judgement about outcomes, but support.

>

> I chime in to let some new people that there are good outcomes. The

tone of the group sometimes can be dark, and if you were looking in

for the first time it could scare you to death. I know how hard it

can be to have setbacks. When my fusion broke after my first

revision, I had terrible waist pain and was so bent to the right that

my ribs were setting on my hip. That was my lowest moment, but

thankfully the second revision got me to the place I am now. I have

had four spinal surgeries,

> My original Harrington rod surgery-1973, at UCSF, fused T-5 to L-

3, !2 hours, Decompression surgery for steniosis and Hardware

removal, December 2000, St. Lukes, Denver 6 hours, Revision surgery

From the front and back, fused to the sacrum, cages, screws, bolts

and small rods, January 2002, St. Lukes, Denver 12 hours and Revision

surgery# 2, Fused T-2 to T-5, repair of cracked fusion, removal of

hardware, replacement hardware stainless steel placed, dramatic

correction achieved of my curve, St. Joesph's Denver, December 2002,

12 hours. I know what it is to have a ton of surgery, to be in pain,

to be depressed about a bad outcome. I've felt it all. I have a ton

of compassion for those who are struggling, I've been there. But I

won't apologize for finally having a good outcome, I and my doctors

have been through too much not to appreciate this gift I have been

given. I also feel that there is a place in the group for all of us,

that maybe my story can give someone a little hope.

>

> As I said in my last post I stay with the group to be of help, it

would be easy to leave since I'm doing well but I stay because the

doctors don't know how well we will all hold up. I may be good for

the rest of my life, but I don't count on it. And if I had a relaspe

of some type, I know all of you that went before me might have advise

to get me through. Lets all stop labeling each other, and work as the

group weve always been. No one knows the pain of this syndrome

better than us, and I look forward to helping others and they

helping me!

>

>

> Colorado Springs

> Re: Re: How is Everyone Doing Post-

Surgery?/Ann

>

>

> Ann - this board isn't just for people who are doing really well

at any

> point before or after surgery. In fact, it was established by

those of us,

> particularly those with Harrington rods and as a result,

flatback, who were having

> problems with chronic pain. We thought there were others who

might be facing

> similar problems alone and needed support. , the

group's original

> moderator who did the majority of the work putting this group

together, has had

> numerous surgeries and chronic pain for years. I think you will

find this

> group is compassionate and many are suffering from chronic

unrelenting pain.

>

> You aren't being negative. You are being honest about how pain

is affecting

> you in your everyday life. It's breaking your heart that you

can't do the

> things you want to do with your little girl, and that you just

don't feel like

> it. There were days when my kids were still home (before my

fusion surgery in

> 94) when all I could do was lay on the bed and cry - I wanted to

keep going

> (which is more my personality), but the pain was so intense I

couldn't move.

> I think you should trust your instincts though - if you think

that

> something's wrong; then make sure the doctor listens to you. Are

you working directly

> with pain management specialists? In my experience, the experts

are more

> helpful in their own areas of expertise than the doctor.

>

> Have you tried some of the alternative therapies for relaxation?

These are

> not going to " cure " anything, but perhaps they can help you

relax, take away

> some of the stress and feel better.

> Jennie

>

>

>