Newbe

[Guest guest]

Well, I have spent about 3 hours reading some of the posts of this

group. I was actually referred here by when I asked about

osteotomy. I seems like a pretty tight group. A lot seems unsaid on

the public end. (Its gotta be like family if you can have potty talk

for at least 50 posts.)

Anyway, I will try to be brief. I had spinal fusion T7-L3. That was

almost 20 years ago. Since then I have only had one surgery for rod

removal and laminectomy.

Funny thing. Until recently, I haven't been able to find much

information regarding treatment after surgery. I have never

personally met anyone with the same surgery as me. Funny because my

daughter's ortho says they " do it all the time " .

I have had pain to some degree starting 1 year after surgery. Its

funny how the pain just creeps up on you and one day you just decide

that you have had enough. You see a doctor, they send you to PT. PT

increases your pain, so you give up. You try facet block injections.

You get releif for a few weeks and feel like you can take on the

world. When it wears off, you try to decide if 6 weeks of releif is

worth the co-payment and 20%. . . Aquatherapy was ok, but unless its

summer, I am NOT going to the pool. (alright, that was probably an

excuse--I don't swim well. I think its because my back doesn't move.)

I have a philosophy about pain, but that is for another time.

I have been to 4 surgeons looking for relief. I finally found out

about the osteotomy a couple weeks ago. And I only knew about flat

back about a year ago.

Anyway. Its good to know that I am not alone.

[Guest guest]

Pnuttro,

Welcome to the group! I guess we are a somewhat " tight " ...but we are

friendly and always looking to help whoever needs to jump in

here...lord knows it stinks to have to deal with this, and even

though this package of problems is more common than we would like to

think...I believe that probably other than , none of us ever

met someone like ourselves. It was with a sense of relief when I

first found a group of people that knew what I was going through and

helped me realize that I had every right to be scared, pissed off

and wishing I was anyone but who I was!

If you are reading from the site I would recommend you go to

the " files " section...you can read member stories there and it will

help you get to know us. When you feel ready we would love to hear a

little more about you too.

I love the way you put this:

" Its funny how the pain just creeps up on you and one day you just

decide that you have had enough. You see a doctor, they send you to

PT. PT increases your pain, so you give up. You try facet block

injections.

You get relief for a few weeks and feel like you can take on the

world. When it wears off, you try to decide if 6 weeks of relief is

worth the co-payment and 20%. . . "

I think that is all our of our stories in a nutshell!

I will be interested to hear your pain theory. What doctors have you

seen and where do you live?

Again, welcome to our corner of the scoli world, Cam

[Guest guest]

My rod had a little wiggle. It would catch a nerve occasionally and

send a shocking, jolting pain up my spine. I knew I needed to do

something when it made me hit the floor and cry.

The surgeon said that there was some breakdown of the steel. He

scraped black flakes from the area. And decided to do a laminectomy

while he was there. He never mentioned it before the operation so I

don't think he planned to do it initially. He told my husband that I

must have a great tolerance for pain because I didn't give him any

indication that my condition was that bad.

> > >

> > > Pnuttro,

> > >

> > > Welcome to the group! I guess we are a somewhat " tight " ...but

we

> are

> > > friendly and always looking to help whoever needs to jump in

> > > here...lord knows it stinks to have to deal with this, and even

> > > though this package of problems is more common than we would

like

> to

> > > think...I believe that probably other than , none of us

ever

> > > met someone like ourselves. It was with a sense of relief when

I

> > > first found a group of people that knew what I was going

through

> and

> > > helped me realize that I had every right to be scared, pissed

off

> > > and wishing I was anyone but who I was!

> > >

> > > If you are reading from the site I would recommend you go to

> > > the " files " section...you can read member stories there and it

> will

> > > help you get to know us. When you feel ready we would love to

> hear a

> > > little more about you too.

> > >

> > > I love the way you put this:

> > > " Its funny how the pain just creeps up on you and one day you

> just

> > > decide that you have had enough. You see a doctor, they send

you

> to

> > > PT. PT increases your pain, so you give up. You try facet

block

> > > injections.

> > > You get relief for a few weeks and feel like you can take on the

> > > world. When it wears off, you try to decide if 6 weeks of

relief

> is

> > > worth the co-payment and 20%. . . "

> > >

> > > I think that is all our of our stories in a nutshell!

> > >

> > > I will be interested to hear your pain theory. What doctors

have

> you

> > > seen and where do you live?

> > >

> > > Again, welcome to our corner of the scoli world, Cam

> > >

> >

>

[Guest guest]

Pnuttro,

What you said " I compensate

> a lot through my hips. A rotated hip posture, if that makes

> sense. . . " makes perfect sense to me if you mean you dip you knees

and push your hips forward a little to keep the torso upright. I

thought I was the only one that knew that trick until I found out that

most flatbackers tend to adopt this pose....until you just can't go

any lower!

Looks can deceive, can't they? Cam

[Guest guest]

Welcome, pnuttro.

Yup. You fit right in here. If you haven't yet done so, you might like to

go through our scoliosis stories in the files section of the site.

(And yes, I know I am WAY overdue to submit mine.)

The details vary but the story tends to be pretty much the same. Disability

sneaks up on you. Pain sneaks up on you. You don't know why you can handle

less and less walking and standing. Conservative measures fail to do more

than buy you some time. You are very much not alone, which comes as a

relief, and yet you know you'd never wish this misery on anybody.

So, sorry you have the need to be here, but glad you've come and hope you'll

stay around. There is a pretty close-knit core here; we actually go back

further than last July, as many of us were acquainted from another forum (or

other forums). But we are by no means exclusive, and you can share as much

or as little of your journey with us as you like.

Looking forward to getting to know you,

Sharon

[ ] Newbe

> Well, I have spent about 3 hours reading some of the posts of this

> group. I was actually referred here by when I asked about

> osteotomy. I seems like a pretty tight group. A lot seems unsaid on

> the public end. (Its gotta be like family if you can have potty talk

> for at least 50 posts.)

>

> Anyway, I will try to be brief. I had spinal fusion T7-L3. That was

> almost 20 years ago. Since then I have only had one surgery for rod

> removal and laminectomy.

>

> Funny thing. Until recently, I haven't been able to find much

> information regarding treatment after surgery. I have never

> personally met anyone with the same surgery as me. Funny because my

> daughter's ortho says they " do it all the time " .

>

> I have had pain to some degree starting 1 year after surgery. Its

> funny how the pain just creeps up on you and one day you just decide

> that you have had enough. You see a doctor, they send you to PT. PT

> increases your pain, so you give up. You try facet block injections.

> You get releif for a few weeks and feel like you can take on the

> world. When it wears off, you try to decide if 6 weeks of releif is

> worth the co-payment and 20%. . . Aquatherapy was ok, but unless its

> summer, I am NOT going to the pool. (alright, that was probably an

> excuse--I don't swim well. I think its because my back doesn't move.)

>

> I have a philosophy about pain, but that is for another time.

>

> I have been to 4 surgeons looking for relief. I finally found out

> about the osteotomy a couple weeks ago. And I only knew about flat

> back about a year ago.

>

> Anyway. Its good to know that I am not alone.

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

I, too welcome you, pnuttro! I'm sorry I'm late, but I read your name wrong and thought you were someone else!

I hope that you'll hang around; if you do, I'm sure you will find some really good friends and lots of "back help".

Of course, I have no medical degrees, but live with scoliosis like just about everyone else here!

Carole M.

[Guest guest]

Thanks, Sharon. It feels good.

>

> Welcome, pnuttro.

>

> Yup. You fit right in here. If you haven't yet done so, you might

like to

> go through our scoliosis stories in the files section of the site.

>

> (And yes, I know I am WAY overdue to submit mine.)

>

> The details vary but the story tends to be pretty much the same.

Disability

> sneaks up on you. Pain sneaks up on you. You don't know why you

can handle

> less and less walking and standing. Conservative measures fail to

do more

> than buy you some time. You are very much not alone, which comes as a

> relief, and yet you know you'd never wish this misery on anybody.

>

> So, sorry you have the need to be here, but glad you've come and

hope you'll

> stay around. There is a pretty close-knit core here; we actually go

back

> further than last July, as many of us were acquainted from another

forum (or

> other forums). But we are by no means exclusive, and you can share

as much

> or as little of your journey with us as you like.

>

> Looking forward to getting to know you,

>

> Sharon

>

>

> [ ] Newbe

>

>

> > Well, I have spent about 3 hours reading some of the posts of this

> > group. I was actually referred here by when I asked about

> > osteotomy. I seems like a pretty tight group. A lot seems unsaid on

> > the public end. (Its gotta be like family if you can have potty talk

> > for at least 50 posts.)

> >

> > Anyway, I will try to be brief. I had spinal fusion T7-L3. That was

> > almost 20 years ago. Since then I have only had one surgery for rod

> > removal and laminectomy.

> >

> > Funny thing. Until recently, I haven't been able to find much

> > information regarding treatment after surgery. I have never

> > personally met anyone with the same surgery as me. Funny because my

> > daughter's ortho says they " do it all the time " .

> >

> > I have had pain to some degree starting 1 year after surgery. Its

> > funny how the pain just creeps up on you and one day you just decide

> > that you have had enough. You see a doctor, they send you to PT. PT

> > increases your pain, so you give up. You try facet block injections.

> > You get releif for a few weeks and feel like you can take on the

> > world. When it wears off, you try to decide if 6 weeks of releif is

> > worth the co-payment and 20%. . . Aquatherapy was ok, but unless its

> > summer, I am NOT going to the pool. (alright, that was probably an

> > excuse--I don't swim well. I think its because my back doesn't move.)

> >

> > I have a philosophy about pain, but that is for another time.

> >

> > I have been to 4 surgeons looking for relief. I finally found out

> > about the osteotomy a couple weeks ago. And I only knew about flat

> > back about a year ago.

> >

> > Anyway. Its good to know that I am not alone.

> >

> >

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

I majored in music in college, and one particular choral conductor always

reminded us not to lock our knees while standing to sing. I always thought

how good my posture was because my knees were always slightly flexed!

Sharon

[ ] Re: Newbe

> Pnuttro,

>

> What you said " I compensate

>> a lot through my hips. A rotated hip posture, if that makes

>> sense. . . " makes perfect sense to me if you mean you dip you knees

> and push your hips forward a little to keep the torso upright. I

> thought I was the only one that knew that trick until I found out that

> most flatbackers tend to adopt this pose....until you just can't go

> any lower!

>

> Looks can deceive, can't they? Cam

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

LOL

>

> I majored in music in college, and one particular choral conductor

always

> reminded us not to lock our knees while standing to sing. I always

thought

> how good my posture was because my knees were always slightly

flexed!

>

> Sharon

>

> [ ] Re: Newbe

>

>

> > Pnuttro,

> >

> > What you said " I compensate

> >> a lot through my hips. A rotated hip posture, if that makes

> >> sense. . . " makes perfect sense to me if you mean you dip you

knees

> > and push your hips forward a little to keep the torso upright. I

> > thought I was the only one that knew that trick until I found out

that

> > most flatbackers tend to adopt this pose....until you just can't

go

> > any lower!

> >

> > Looks can deceive, can't they? Cam

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

Hi

Im glad you found us, but I wish the circumstances were different.

I am don in ks, and I have HCV also.

I have a bad heart, so no interferon treatment for me.

I must wait on a non-interferon treatment.

Im not sure I understand what your saying.

- Who??? - told you that you were too far gone to recieve treatment?

- What are your lab results?

- Have you had a liver biopsy, and if so, when, and what did that say?

- What exactly were the reasons for denying you treatment?

Are you on a transplant list?

That would be the next logical step if your liver is too far gone from Cirrhosis.

And then after a transplant, there is a good chance that they can treat you....maybe.

I have done a lot of research about both Alternative and Conventional treatments.

Your right, the Ozone only affects the blood, but not on a cellular level.

There are also other Alternative things that you can do to slow down the HCV progression.

That is what many of us are doing because we cant, or dont want to treat with the Conventional meds.

, you sound like your giving up, from your post.

I hope that that isnt true, my friend.

Talk to me, and tell me details.

I might know something that could help you.

I am not a medical professional, but like I say, I do do a lot of research.

And I live by the philosophy that there is always HOPE, and most likely answers.

I mean, medical science is making leaps and bounds just in the last few years.

There are tons of new things comming down the pipeline.

Its very exciting.

, it aint over until its over.

NEVER give up.

love

don in ks

From: fathersplace <fathersplace@...>Subject: [ ] Newbe Date: Friday, April 15, 2011, 1:28 AM

Hi all, I signed up here, well, because there's not a whole lot to do when you're sails with the C bug.. I've came down with it a couple yrs. back, and just sort of been doing the up & down battles with it ever since. Was told I'm too far gone to be considered for the interferon treatment etc. so the doc's are surprised to see me coming in now and again for blood test. Like probably most of everyone here, I've tried truck loads of all kinds of herbs, and actually got my best results when doing the ozone/saline IV's. Ozone get's after the virus within the bloodstream, but is harder to get down within the tissue of the liver.. so after a few months of doing 3 treatments a wk. I stopped and kind of back to a low tide again. All in all.. I've just excepted the fact of a short life span left, and in many ways, am kind of looking forward to continuing on my journey home, whenever that day comes.

Well...so much for an introduction, thanks for listening....------------------------------------