Re: How I feel post revision

[Guest guest]

Dear ,

I had my last revision in December 2002, and that surgery truly gave me my

life back, at least the ability to live a somewhat normal life back. Before

my surgeries I could walk only a few feet before having to sit down because

of the pain. I couldn't stand in lines, or stand long enough to cook a meal.

I was very deformed, bent forward to the point where all I could see was the

carpet or the sidewalk. I had one very droopy shoulder, that I would bring

up to make it look somewhat normal. My hips were very uneven. I hurt all the

time, felt eighty, instead of forty, was depressed and sad.

While my battle through Flatback included more surgery than most here, I

have had remarkable results. I walk whereever I want, for as long as I want.

I stand in line, cook meals, go to the DMV, and don't mind a line except for

the time it takes out of my life. I can see the sky, not the ground, it's

good to see the pretty mountains that surround us here in Colorado Springs.

Most surprising to me is how pleased I am with my appearance, I'm level,

shoulders and hips. The hump in my lower back is greatly reduced, so I can

pass a normal. The relief in pain can be seen on my face, people tell me

constantly how good I look, that I have a gleem in my eye. I had family

members at our family reunion cry when they saw me, so happy for me that I

didn't look like I was in so much pain. I look like a different person,

something I wasn't looking for from the revision, but so very glad it worked

out that way!

Drawbacks to the surgery, yes there are a few, mentioned here often, but

minor in the scheme of things. Can't bend, shaving my legs is a pain, forget

trimming my toenails. I'm an expert at grabbers for getting things on the

ground, can even repair them. Use a sock aid daily. But for what I got from

surgery it's almost unthankful to complain about what I lost, all which can

be gotten around with tools.

I'm grateful to myself that I didn't give up on trying to get myself fixed,

though so many doctors told me I'd have to live that way. I'm grateful every

day for my surgeon Dr. Anant Kumar, who never gave up on getting me to the

place I am now, painfree, level, and less deformed. I'm also thankful for

Dr. O'Brien, who helped on all my surgeries. I'm thankful for my

family who have been great through the whole surgery, recovery, and living

with a revisied body story. The story continues, what the future holds no

one is sure, but I'm grateful each day for the surgery, and my results, and

hope it continues.

Colorado Springs

[ ] Re: toilet troubles

> --

> Thanks ,

> I appreciated the article. I still am curious how most folks on this

> board have felt post revision.I t would give you a sample from a

> varied group. It would not change my mind in moving forward, I think

> it is just becoming more " real " to me now that I have a date. It is

> going to come so, so fast. I find myself unable to sleep at night, as

> you can see it is 3:45am..I wake up thinking about what i must do

> before surgery,dream about weird stuff etc. I am sure it is all

> normal. I would really like to wake up and have it all be over!!!!

> ,PA

>

>

>

> - In , " Racine " <linda@s...>

> wrote:

>>

>> Hi ...

>>

>> Here's a link to an abstract from a study that compared primary to

>> revision surgery:

>>

>> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> cmd=Retrieve & db=PubMed & list_uids=11317124 & dopt=Abstract

>>

>> --

>>

>>

>> >

>> > ---

>> > Question for the Board/Committee,

>> >

>> > How many folks who have had revision surgery feel they are better

> off

>> > since the surgery? ,PA

>>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

,

I don't want to belabor the point I have made often. Coming up 10

months revision I am happy with where I am and expect to be in the

future. I can not imagine that I really had any other choice. I feel

every day for those on this board that are, for whatever reason,

unable to pursue revision. As said, it is not perfect, but I

am able to go about my life with minimal accomodations. I have given

up the idea that I will ever ski again...not that I don't believe it

would be possible, but I don't think I could ever relax enough to

enjoy it...a bad fall would be a bad thing...and there are so many

people on the slopes on the verge of out of control that I don't

think it is wise to risk it.

Other than that....I don't see much limitation. (well..I probably

wouldn't play any new sport) I will always have to find around some

of the trickier things that need picking up...gardening should be

back in the lineup by next summer...I had no problem beaching and

boating last summer. I can sit and read a novel in just aobut any

chair. I expect I will probably regain enough flexibility to attend

to my feet...I will shave my own legs...either with an extension or

not. The days of using a tampon seem to be on the wane..no loss

there.

How this plays out at 65 or 75 is an open question. I expect I am

going to have to be attentive to bone health, weight and core

strength and flexibility forever. I am hoping to be an active

senior...but if that doesn't happen...well...it was better than

spending my 40's and 50's in agony and miserable to be around. That

in and of it self would have created it's own downward spiralling

set of circumstances.

I hope others answer you too..I know you are all sick of hearing

about me! Cam

[Guest guest]

Oh, Cam, God love ya!

With all you have been through, and with your very positive outlook, I truly believe that your "senior years" will pretty much the norm for anyone! I know that I hope so! You are such a "trooper"!

One of the things most of us women have a problem with, I think, is actually "taking care of ourselves"! Those of us who have husbands who are involved may even find it harder, because there is always that balance to be maintained. As an older "scolio" I am very proud of the members of this board who find their way to better lives! Yay to all of you! I won't mention names, because I would probably leave someone out! But, again, kudos!

I went to the Zappo site and just loved it! My daughter may just get new boots from the site for Christmas. I had never heard of it before! Again, I thank you!

In my younger life, I had a couple of vacations on Nantucket, (can you believe we flew there from Boston?) and swore that was where I would honeymoon. Didn't happen. I married a very poor engineering student, and we barely had a honeymoon. Now, however, we are retired and just may end up on Nantucket for a vacation someday! I think you live on a real piece of Heaven! Hang in there; winter/snow/today, etc. may be a more lonesome time, but some of us out here would be there in a NY minute, if possible!

Sincerely,

Carole M.

[Guest guest]

-

,

What a wonderful story. I am so appreciative you took the time to

tell me this, this is the stuff I am wondering about. I know everyone

is different but I wondered about the everyday stuff, lines, walking

etc...I so want that part of my life back!!!! I find myself

rethinking a little stop at the grocery store to run in for a few

things..a year ago I would have never thought of that..My muscles

are sore also from the tilt and the way my weight is redistributed

over my knees....I think I can readjust to toe clipping and

shaving...minor compared to the other things that are happening and

that are getting worse by the day. Thanks a million for taking the

time to tell me these things..I really needed to hear the daily

reality of what you find different since revision.....Fondly, ,PA

-- In , " Kirkaldie "

<.Kirkaldie@a...> wrote:

>

> Dear ,

>

> I had my last revision in December 2002, and that surgery truly

gave me my

> life back, at least the ability to live a somewhat normal life

back. Before

> my surgeries I could walk only a few feet before having to sit down

because

> of the pain. I couldn't stand in lines, or stand long enough to

cook a meal.

> I was very deformed, bent forward to the point where all I could

see was the

> carpet or the sidewalk. I had one very droopy shoulder, that I

would bring

> up to make it look somewhat normal. My hips were very uneven. I

hurt all the

> time, felt eighty, instead of forty, was depressed and sad.

>

> While my battle through Flatback included more surgery than most

here, I

> have had remarkable results. I walk whereever I want, for as long

as I want.

> I stand in line, cook meals, go to the DMV, and don't mind a line

except for

> the time it takes out of my life. I can see the sky, not the

ground, it's

> good to see the pretty mountains that surround us here in Colorado

Springs.

> Most surprising to me is how pleased I am with my appearance, I'm

level,

> shoulders and hips. The hump in my lower back is greatly reduced,

so I can

> pass a normal. The relief in pain can be seen on my face, people

tell me

> constantly how good I look, that I have a gleem in my eye. I had

family

> members at our family reunion cry when they saw me, so happy for me

that I

> didn't look like I was in so much pain. I look like a different

person,

> something I wasn't looking for from the revision, but so very glad

it worked

> out that way!

>

> Drawbacks to the surgery, yes there are a few, mentioned here

often, but

> minor in the scheme of things. Can't bend, shaving my legs is a

pain, forget

> trimming my toenails. I'm an expert at grabbers for getting things

on the

> ground, can even repair them. Use a sock aid daily. But for what I

got from

> surgery it's almost unthankful to complain about what I lost, all

which can

> be gotten around with tools.

>

> I'm grateful to myself that I didn't give up on trying to get

myself fixed,

> though so many doctors told me I'd have to live that way. I'm

grateful every

> day for my surgeon Dr. Anant Kumar, who never gave up on getting me

to the

> place I am now, painfree, level, and less deformed. I'm also

thankful for

> Dr. O'Brien, who helped on all my surgeries. I'm thankful

for my

> family who have been great through the whole surgery, recovery, and

living

> with a revisied body story. The story continues, what the future

holds no

> one is sure, but I'm grateful each day for the surgery, and my

results, and

> hope it continues.

>

>

> Colorado Springs

> [ ] Re: toilet troubles

>

>

> > --

> > Thanks ,

> > I appreciated the article. I still am curious how most folks on

this

> > board have felt post revision.I t would give you a sample from a

> > varied group. It would not change my mind in moving forward, I

think

> > it is just becoming more " real " to me now that I have a date. It

is

> > going to come so, so fast. I find myself unable to sleep at

night, as

> > you can see it is 3:45am..I wake up thinking about what i must do

> > before surgery,dream about weird stuff etc. I am sure it is all

> > normal. I would really like to wake up and have it all be over!!!!

> > ,PA

> >

> >

> >

> > - In , " Racine " <linda@s...>

> > wrote:

> >>

> >> Hi ...

> >>

> >> Here's a link to an abstract from a study that compared primary

to

> >> revision surgery:

> >>

> >> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> > cmd=Retrieve & db=PubMed & list_uids=11317124 & dopt=Abstract

> >>

> >> --

> >>

> >>

> >> >

> >> > ---

> >> > Question for the Board/Committee,

> >> >

> >> > How many folks who have had revision surgery feel they are

better

> > off

> >> > since the surgery? ,PA

> >>

> >

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

--Cam,

THanks, yeah I am pretty good on where you are...but never tire of

hearing the progress...I was wondering about some of the others who I

have not had the chance to hear about how they are doing..I am sort

of new here and going right to revision...so, I am not as up on who

has done what and where they are as you are. I found 's story

interesting, kind of tells you the real life way it is day to

day...that is what I find interesting becasue in the end we all have

to get up and put our pants on in the morning and go about our

business!!! <Pa

- In , " cammaltby " <cammaltby@y...>

wrote:

>

> ,

>

> I don't want to belabor the point I have made often. Coming up 10

> months revision I am happy with where I am and expect to be in the

> future. I can not imagine that I really had any other choice. I

feel

> every day for those on this board that are, for whatever reason,

> unable to pursue revision. As said, it is not perfect, but I

> am able to go about my life with minimal accomodations. I have

given

> up the idea that I will ever ski again...not that I don't believe

it

> would be possible, but I don't think I could ever relax enough to

> enjoy it...a bad fall would be a bad thing...and there are so many

> people on the slopes on the verge of out of control that I don't

> think it is wise to risk it.

>

> Other than that....I don't see much limitation. (well..I probably

> wouldn't play any new sport) I will always have to find around some

> of the trickier things that need picking up...gardening should be

> back in the lineup by next summer...I had no problem beaching and

> boating last summer. I can sit and read a novel in just aobut any

> chair. I expect I will probably regain enough flexibility to attend

> to my feet...I will shave my own legs...either with an extension or

> not. The days of using a tampon seem to be on the wane..no loss

> there.

>

> How this plays out at 65 or 75 is an open question. I expect I am

> going to have to be attentive to bone health, weight and core

> strength and flexibility forever. I am hoping to be an active

> senior...but if that doesn't happen...well...it was better than

> spending my 40's and 50's in agony and miserable to be around. That

> in and of it self would have created it's own downward spiralling

> set of circumstances.

>

> I hope others answer you too..I know you are all sick of hearing

> about me! Cam

>

[Guest guest]

Dear ,

Glad what I said helped, hard to know what it will be like without people

who have been through it. Any questions you have, just throw them out here,

someone has been through it. You can feel very alone in this, I've only met

in person one other person with Flatback. It's so good to have this group,

to have all the knowledge, and the feeling that someone " gets " it. I wish

you the greats luck with surgery!

Colorado Springs

[ ] Re: toilet troubles

>>

>>

>> > --

>> > Thanks ,

>> > I appreciated the article. I still am curious how most folks on

> this

>> > board have felt post revision.I t would give you a sample from a

>> > varied group. It would not change my mind in moving forward, I

> think

>> > it is just becoming more " real " to me now that I have a date. It

> is

>> > going to come so, so fast. I find myself unable to sleep at

> night, as

>> > you can see it is 3:45am..I wake up thinking about what i must do

>> > before surgery,dream about weird stuff etc. I am sure it is all

>> > normal. I would really like to wake up and have it all be over!!!!

>> > ,PA

>> >

>> >

>> >

>> > - In , " Racine " <linda@s...>

>> > wrote:

>> >>

>> >> Hi ...

>> >>

>> >> Here's a link to an abstract from a study that compared primary

> to

>> >> revision surgery:

>> >>

>> >> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

>> > cmd=Retrieve & db=PubMed & list_uids=11317124 & dopt=Abstract

>> >>

>> >> --

>> >>

>> >>

>> >> >

>> >> > ---

>> >> > Question for the Board/Committee,

>> >> >

>> >> > How many folks who have had revision surgery feel they are

> better

>> > off

>> >> > since the surgery? ,PA

>> >>

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > scoliosis veterans * flatback sufferers * revision candidates

>> >

[Guest guest]

---Thanks, , I don't think I could do this or make reasonable

decisions without this group. Knowledge is power..the knowledge I

have gained via this group has given me the power to make the

decisions I need to make....,PA

In , " Kirkaldie "

<.Kirkaldie@a...> wrote:

>

> Dear ,

>

> Glad what I said helped, hard to know what it will be like without

people

> who have been through it. Any questions you have, just throw them

out here,

> someone has been through it. You can feel very alone in this, I've

only met

> in person one other person with Flatback. It's so good to have this

group,

> to have all the knowledge, and the feeling that someone " gets " it.

I wish

> you the greats luck with surgery!

>

>

> Colorado Springs

> [ ] Re: toilet troubles

> >>

> >>

> >> > --

> >> > Thanks ,

> >> > I appreciated the article. I still am curious how most folks on

> > this

> >> > board have felt post revision.I t would give you a sample from

a

> >> > varied group. It would not change my mind in moving forward, I

> > think

> >> > it is just becoming more " real " to me now that I have a date.

It

> > is

> >> > going to come so, so fast. I find myself unable to sleep at

> > night, as

> >> > you can see it is 3:45am..I wake up thinking about what i must

do

> >> > before surgery,dream about weird stuff etc. I am sure it is all

> >> > normal. I would really like to wake up and have it all be

over!!!!

> >> > ,PA

> >> >

> >> >

> >> >

> >> > - In , " Racine "

<linda@s...>

> >> > wrote:

> >> >>

> >> >> Hi ...

> >> >>

> >> >> Here's a link to an abstract from a study that compared

primary

> > to

> >> >> revision surgery:

> >> >>

> >> >> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> >> > cmd=Retrieve & db=PubMed & list_uids=11317124 & dopt=Abstract

> >> >>

> >> >> --

> >> >>

> >> >>

> >> >> >

> >> >> > ---

> >> >> > Question for the Board/Committee,

> >> >> >

> >> >> > How many folks who have had revision surgery feel they are

> > better

> >> > off

> >> >> > since the surgery? ,PA

> >> >>

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > scoliosis veterans * flatback sufferers * revision candidates

> >> >

[Guest guest]

Carole,

Nantucket is pretty easy to get to from Boston....since you were here

last, on top of planes and slow boats, there are high speed ferries

from Hyannis....drive or bus to the cape and an hour later you are on

the island...come vist any day!

Glad you liked the Zappos site...I think it's awesome.

[Guest guest]

Hi ,

I had my revision in October 2002, aged 29 at the time. In technical terms it was a bit different to some revisions, because I was previously fused a/p over T10-L2 (very short fusion), and that in a kyphosis instead of lordosis. So it complicated the sorting out of the whole situation, because an anterior fusion is a lot harder to work around than " just " posterior. In all, I was taken from a 45+ degree kyphosis there to a 30 degree lordosis, with a posterior only surgery in which they used the posterior incision to reach around and smash up the anterior fusion, whilst leaving the anterior rod in situ.

As to whether I'm grateful for it, glad I had it done, oh yes. There is absolutely no doubt in my mind that it was totally the right decision! Prior to surgery I don't know how on earth I coped at all. I was taking 2400mg ibuprofen, 80mg dihydrocodeine tartrate and 4g paracetamol daily and it barely knocked the very roughest edges off the pain. The only thing that kept me from the stronger painkillers that I really needed was sheer terror of pain after surgery (my first surgery was a louse up on so many levels, not least that the pain control was non existent for the first few days - I kept complaining the PCA wasn't working, and was persistently told " Of course it won't if you don't press it " !!! Yet I kept pressing it for no result - so it wasn't until they took me off it and gave me 2 co-proxamol [325mg paracetamol/32.5mg dextropropoxyphene] and 50 mg diclofenac twice a day that I had any relief) so that I just didn't dare step up to the stronger pain killers for fear of developing tolerance being unable to cope afterward.

By the time I got to surgery, I couldn't walk more than a few yards at a time. I shuffled along with my knees bent, my hips bent, my ankles bent, and still leaning forward and hyperextending my neck. I had so many pains in so many places I literally couldn't list them all now. I had a headache for a good 2 years, because I was permanently in that much spasm from being out of balance. Depending on what kind of back pain was dominant, I bordered on incontinent. When I needed to go, I needed to go now, right now, immediately - except that actually a lot of the time despite having a bladder fit to burst, either nothing at all would happen, or I'd trickle just a little, that would be it, and I'd still feel just as desperate. I had bowel issues too - again, either I *had* to go, or I couldn't go at all, and again it seemed to match the dominant back pain. I kept falling over as well - my right leg just became increasingly unreliable, to the extent that I made sure as far as possible to only ever walk anywhere that I had something to my right that I could bounce off when (not if) I fell over. Being so crunched up as I was I got terribly out of shape and developed swollen ankles and would be breathless on exertion, and was having a lot of arrhythmias.

As it is, I do unfortunately have ongoing problems. I've continued falling over and sometimes have difficulty lifting my feet. I went through a stage about a year ago where I was in a *lot* of pain again. It turns out I have stenosis, both central and of the nerve root exits (especially the right) at L4-5. The severe aggravation of it last year has put a crimp in things - I can't walk as far, I can't stand for as long, I do have to be more careful again to avoid aggravating the nerves. It is probable that I'll need further surgery for decompression. Even so - I am *so* much better off than I was before the revision! Ok, I don't lead a normal life for a 32 yr old, but it's really not so bad - I can do most things that I want to even if not in the same quantity or the same speed as someone without any back troubles. I'm getting married in a couple of weeks time, and we're hoping to have kids, not something I could possibly have contemplated in the state I was in, but feel happy to tackle now. I'm still contemplating, if I can build enough muscle strength at the gym, trying out various things like rock climbing. If I can get fit enough to feel safe to do it I'll do a diving course or two so that I can go on some of the courses my cousin arranges.

We have to take things slowly, but in the past year some of the things I've done to the house with the other half have included ripping a ceiling down, building 2 stud walls, laying a laminate floor, cutting and fitting skirtingboard and coving, cutting and fitting a windowsill, wallpapering that room and painting the necessary bits. Some things have had to be handed over to him - I'm not going to be painting any more ceilings. And when it came to refitting the ceiling we ripped down, we had a friend come round to help hang the new one - I just made regular cuppas and laughed at the swearing to be heard from upstairs *hehehe* And I certainly didn't move fast on any of the bits that I did do. But the point is that I was able to do them, and more to the point, as long as I was careful, I didn't even need to take painkillers to be able to do them, or afterward. I can say without doubt that the surgery gave me a life back - maybe not quite the one I had before, but hey, I'm glad for what I've got )

Sorry for rattling on for so long - hope that helps a bit anyway.

titch

-- Something unknown is doing we don't know what

[Guest guest]

---Titch,

Wow,sounds to me like you are doing pretty good!! I certianly would

be unable in my gimpy state to do any of those things!! I think as

scoli's we are always going to have issues but if we can get some

quality of life back!!! I am glad yo here your story and do

appreciate the time you took to write it to me. It helps see where

folks are after revision. ,PA

In , oojackapivvy

<oojackapivvy@g...> wrote:

>

> Hi ,

>

> I had my revision in October 2002, aged 29 at the time. In

technical terms

> it was a bit different to some revisions, because I was previously

fused a/p

> over T10-L2 (very short fusion), and that in a kyphosis instead of

> lordosis. So it complicated the sorting out of the whole

situation, because

> an anterior fusion is a lot harder to work around than " just "

posterior. In

> all, I was taken from a 45+ degree kyphosis there to a 30 degree

lordosis,

> with a posterior only surgery in which they used the posterior

incision to

> reach around and smash up the anterior fusion, whilst leaving the

anterior

> rod in situ.

>

> As to whether I'm grateful for it, glad I had it done, oh yes.

There is

> absolutely no doubt in my mind that it was totally the right

decision!

> Prior to surgery I don't know how on earth I coped at all. I was

taking

> 2400mg ibuprofen, 80mg dihydrocodeine tartrate and 4g paracetamol

daily and

> it barely knocked the very roughest edges off the pain. The only

thing that

> kept me from the stronger painkillers that I really needed was

sheer terror

> of pain after surgery (my first surgery was a louse up on so many

levels,

> not least that the pain control was non existent for the first few

days - I

> kept complaining the PCA wasn't working, and was persistently

told " Of

> course it won't if you don't press it " !!! Yet I kept pressing it

for no

> result - so it wasn't until they took me off it and gave me 2 co-

proxamol

> [325mg paracetamol/32.5mg dextropropoxyphene] and 50 mg diclofenac

twice a

> day that I had any relief) so that I just didn't dare step up to the

> stronger pain killers for fear of developing tolerance being unable

to cope

> afterward.

>

> By the time I got to surgery, I couldn't walk more than a few yards

at a

> time. I shuffled along with my knees bent, my hips bent, my ankles

bent,

> and still leaning forward and hyperextending my neck. I had so

many pains

> in so many places I literally couldn't list them all now. I had a

headache

> for a good 2 years, because I was permanently in that much spasm

from being

> out of balance. Depending on what kind of back pain was dominant, I

> bordered on incontinent. When I needed to go, I needed to go now,

right

> now, immediately - except that actually a lot of the time despite

having a

> bladder fit to burst, either nothing at all would happen, or I'd

trickle

> just a little, that would be it, and I'd still feel just as

desperate. I

> had bowel issues too - again, either I *had* to go, or I couldn't

go at all,

> and again it seemed to match the dominant back pain. I kept

falling over as

> well - my right leg just became increasingly unreliable, to the

extent that

> I made sure as far as possible to only ever walk anywhere that I had

> something to my right that I could bounce off when (not if) I fell

over.

> Being so crunched up as I was I got terribly out of shape and

developed

> swollen ankles and would be breathless on exertion, and was having

a lot of

> arrhythmias.

>

> As it is, I do unfortunately have ongoing problems. I've continued

falling

> over and sometimes have difficulty lifting my feet. I went through

a stage

> about a year ago where I was in a *lot* of pain again. It turns

out I have

> stenosis, both central and of the nerve root exits (especially the

right) at

> L4-5. The severe aggravation of it last year has put a crimp in

things - I

> can't walk as far, I can't stand for as long, I do have to be more

careful

> again to avoid aggravating the nerves. It is probable that I'll

need

> further surgery for decompression. Even so - I am *so* much better

off than

> I was before the revision! Ok, I don't lead a normal life for a 32

yr old,

> but it's really not so bad - I can do most things that I want to

even if not

> in the same quantity or the same speed as someone without any back

> troubles. I'm getting married in a couple of weeks time, and we're

hoping

> to have kids, not something I could possibly have contemplated in

the state

> I was in, but feel happy to tackle now. I'm still contemplating,

if I can

> build enough muscle strength at the gym, trying out various things

like rock

> climbing. If I can get fit enough to feel safe to do it I'll do a

diving

> course or two so that I can go on some of the courses my cousin

arranges.

>

> We have to take things slowly, but in the past year some of the

things I've

> done to the house with the other half have included ripping a

ceiling down,

> building 2 stud walls, laying a laminate floor, cutting and fitting

> skirtingboard and coving, cutting and fitting a windowsill,

wallpapering

> that room and painting the necessary bits. Some things have had to

be

> handed over to him - I'm not going to be painting any more

ceilings. And

> when it came to refitting the ceiling we ripped down, we had a

friend come

> round to help hang the new one - I just made regular cuppas and

laughed at

> the swearing to be heard from upstairs *hehehe* And I certainly

didn't move

> fast on any of the bits that I did do. But the point is that I was

able to

> do them, and more to the point, as long as I was careful, I didn't

even need

> to take painkillers to be able to do them, or afterward. I can say

without

> doubt that the surgery gave me a life back - maybe not quite the

one I had

> before, but hey, I'm glad for what I've got )

>

> Sorry for rattling on for so long - hope that helps a bit anyway.

>

> titch

>

> --

> Something unknown is doing we don't know what

>

[Guest guest]

Hi Cam,well it's starting to be official now I have a date of Jan.4 to have the cat scan. Dr. Rand's office called today and set it up, I don't know if there are anymore test after this one but they'll will call me after the test is done she said..It's a start and the operation will be here before I realize it. OUCH coming fast now...Vonniecammaltby <cammaltby@...> wrote: ,I don't want to belabor the point I have made often. Coming up 10 months revision I am happy with where I am and expect to be in the future. I can not imagine that I really had any other choice. I feel every day for those on this board that are, for whatever reason, unable to pursue revision. As said, it is not perfect, but I am able to go about my life with minimal accomodations. I have given up the idea that I

will ever ski again...not that I don't believe it would be possible, but I don't think I could ever relax enough to enjoy it...a bad fall would be a bad thing...and there are so many people on the slopes on the verge of out of control that I don't think it is wise to risk it.Other than that....I don't see much limitation. (well..I probably wouldn't play any new sport) I will always have to find around some of the trickier things that need picking up...gardening should be back in the lineup by next summer...I had no problem beaching and boating last summer. I can sit and read a novel in just aobut any chair. I expect I will probably regain enough flexibility to attend to my feet...I will shave my own legs...either with an extension or not. The days of using a tampon seem to be on the wane..no loss there.How this plays out at 65 or 75 is an open question. I expect I am going to have to be attentive to bone health,

weight and core strength and flexibility forever. I am hoping to be an active senior...but if that doesn't happen...well...it was better than spending my 40's and 50's in agony and miserable to be around. That in and of it self would have created it's own downward spiralling set of circumstances.I hope others answer you too..I know you are all sick of hearing about me! Cam

Personals Let fate take it's course directly to your email. See who's waiting for you Personals

Personals Let fate take it's course directly to your email. See who's waiting for you Personals

[Guest guest]

Titch:

I of course remember you from a prior MB.

Unfortunately I couldn't remember your complete story,

or maybe I never knew it. Having just read what you

posted left me feeling badly for you that you

underwent such pain at such a young age. Perhaps I

never knew that. I was also not aware that you have

ongoing issues. What a shame to have gone through all

those surgeries and still need more. You are still

young however and perhaps soon " they will get it

right " . Take care.

Michele

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Hey, Titch! Congrats on the upcoming nuptials! I'm really happy for you.

So nice of the busy bride-to-be to take the time to encourage your flatback friends.

One reason I've been putting off surgery is that this house and yard need SO much work, and I haven't felt I could afford the time out of commission. So your home improvement activities are very helpful to give me a sense that there may very well be life after revision! I've read lots of your posts over the years and various forums, so I remember some of what your old life was like.

I'll be meeting Dr. Rand for the first time in Boston tomorrow, so this is a VERY good time to feel encouraged.

I hope you'll continue to enjoy life, and have lovely babies too!

Sharon

Re: [ ] Re: How I feel post revision

Hi ,

I had my revision in October 2002, aged 29 at the time. In technical terms it was a bit different to some revisions, because I was previously fused a/p over T10-L2 (very short fusion), and that in a kyphosis instead of lordosis. So it complicated the sorting out of the whole situation, because an anterior fusion is a lot harder to work around than "just" posterior. In all, I was taken from a 45+ degree kyphosis there to a 30 degree lordosis, with a posterior only surgery in which they used the posterior incision to reach around and smash up the anterior fusion, whilst leaving the anterior rod in situ.

As to whether I'm grateful for it, glad I had it done, oh yes. There is absolutely no doubt in my mind that it was totally the right decision! Prior to surgery I don't know how on earth I coped at all. I was taking 2400mg ibuprofen, 80mg dihydrocodeine tartrate and 4g paracetamol daily and it barely knocked the very roughest edges off the pain. The only thing that kept me from the stronger painkillers that I really needed was sheer terror of pain after surgery (my first surgery was a louse up on so many levels, not least that the pain control was non existent for the first few days - I kept complaining the PCA wasn't working, and was persistently told "Of course it won't if you don't press it"!!! Yet I kept pressing it for no result - so it wasn't until they took me off it and gave me 2 co-proxamol [325mg paracetamol/32.5mg dextropropoxyphene] and 50 mg diclofenac twice a day that I had any relief) so that I just didn't dare step up to the stronger pain killers for fear of developing tolerance being unable to cope afterward.

By the time I got to surgery, I couldn't walk more than a few yards at a time. I shuffled along with my knees bent, my hips bent, my ankles bent, and still leaning forward and hyperextending my neck. I had so many pains in so many places I literally couldn't list them all now. I had a headache for a good 2 years, because I was permanently in that much spasm from being out of balance. Depending on what kind of back pain was dominant, I bordered on incontinent. When I needed to go, I needed to go now, right now, immediately - except that actually a lot of the time despite having a bladder fit to burst, either nothing at all would happen, or I'd trickle just a little, that would be it, and I'd still feel just as desperate. I had bowel issues too - again, either I *had* to go, or I couldn't go at all, and again it seemed to match the dominant back pain. I kept falling over as well - my right leg just became increasingly unreliable, to the extent that I made sure as far as possible to only ever walk anywhere that I had something to my right that I could bounce off when (not if) I fell over. Being so crunched up as I was I got terribly out of shape and developed swollen ankles and would be breathless on exertion, and was having a lot of arrhythmias.

As it is, I do unfortunately have ongoing problems. I've continued falling over and sometimes have difficulty lifting my feet. I went through a stage about a year ago where I was in a *lot* of pain again. It turns out I have stenosis, both central and of the nerve root exits (especially the right) at L4-5. The severe aggravation of it last year has put a crimp in things - I can't walk as far, I can't stand for as long, I do have to be more careful again to avoid aggravating the nerves. It is probable that I'll need further surgery for decompression. Even so - I am *so* much better off than I was before the revision! Ok, I don't lead a normal life for a 32 yr old, but it's really not so bad - I can do most things that I want to even if not in the same quantity or the same speed as someone without any back troubles. I'm getting married in a couple of weeks time, and we're hoping to have kids, not something I could possibly have contemplated in the state I was in, but feel happy to tackle now. I'm still contemplating, if I can build enough muscle strength at the gym, trying out various things like rock climbing. If I can get fit enough to feel safe to do it I'll do a diving course or two so that I can go on some of the courses my cousin arranges.

We have to take things slowly, but in the past year some of the things I've done to the house with the other half have included ripping a ceiling down, building 2 stud walls, laying a laminate floor, cutting and fitting skirtingboard and coving, cutting and fitting a windowsill, wallpapering that room and painting the necessary bits. Some things have had to be handed over to him - I'm not going to be painting any more ceilings. And when it came to refitting the ceiling we ripped down, we had a friend come round to help hang the new one - I just made regular cuppas and laughed at the swearing to be heard from upstairs *hehehe* And I certainly didn't move fast on any of the bits that I did do. But the point is that I was able to do them, and more to the point, as long as I was careful, I didn't even need to take painkillers to be able to do them, or afterward. I can say without doubt that the surgery gave me a life back - maybe not quite the one I had before, but hey, I'm glad for what I've got )

Sorry for rattling on for so long - hope that helps a bit anyway.

titch

-- Something unknown is doing we don't know what

[Guest guest]

Can anyone answer this question? Can scoliosis patients with tritium rods ever need revision surgery? Unless I have missed something, everyone having revision surgery have Harrington Rods.

Joyce E

Re: [ ] Re: How I feel post revision

Hi ,

I had my revision in October 2002, aged 29 at the time. In technical terms it was a bit different to some revisions, because I was previously fused a/p over T10-L2 (very short fusion), and that in a kyphosis instead of lordosis. So it complicated the sorting out of the whole situation, because an anterior fusion is a lot harder to work around than "just" posterior. In all, I was taken from a 45+ degree kyphosis there to a 30 degree lordosis, with a posterior only surgery in which they used the posterior incision to reach around and smash up the anterior fusion, whilst leaving the anterior rod in situ.

As to whether I'm grateful for it, glad I had it done, oh yes. There is absolutely no doubt in my mind that it was totally the right decision! Prior to surgery I don't know how on earth I coped at all. I was taking 2400mg ibuprofen, 80mg dihydrocodeine tartrate and 4g paracetamol daily and it barely knocked the very roughest edges off the pain. The only thing that kept me from the stronger painkillers that I really needed was sheer terror of pain after surgery (my first surgery was a louse up on so many levels, not least that the pain control was non existent for the first few days - I kept complaining the PCA wasn't working, and was persistently told "Of course it won't if you don't press it"!!! Yet I kept pressing it for no result - so it wasn't until they took me off it and gave me 2 co-proxamol [325mg paracetamol/32.5mg dextropropoxyphene] and 50 mg diclofenac twice a day that I had any relief) so that I just di! dn't dare step up to the stronger pain killers for fear of developing tolerance being unable to cope afterward.

By the time I got to surgery, I couldn't walk more than a few yards at a time. I shuffled along with my knees bent, my hips bent, my ankles bent, and still leaning forward and hyperextending my neck. I had so many pains in so many places I literally couldn't list them all now. I had a headache for a good 2 years, because I was permanently in that much spasm from being out of balance. Depending on what kind of back pain was dominant, I bordered on incontinent. When I needed to go, I needed to go now, right now, immediately - except that actually a lot of the time despite having a bladder fit to burst, either nothing at all would happen, or I'd trickle just a little, that would be it, and I'd still feel just as desperate. I had bowel issues too - again, either I *had* to go, or I couldn't go at all, and again it seemed to match the dominant back pain. I kept falling over as well - my right leg just became increasingly unreliable, ! to the extent that I made sure as far as possible to only ever walk anywhere that I had something to my right that I could bounce off when (not if) I fell over. Being so crunched up as I was I got terribly out of shape and developed swollen ankles and would be breathless on exertion, and was having a lot of arrhythmias.

As it is, I do unfortunately have ongoing problems. I've continued falling over and sometimes have difficulty lifting my feet. I went through a stage about a year ago where I was in a *lot* of pain again. It turns out I have stenosis, both central and of the nerve root exits (especially the right) at L4-5. The severe aggravation of it last year has put a crimp in things - I can't walk as far, I can't stand for as long, I do have to be more careful again to avoid aggravating the nerves. It is probable that I'll need further surgery for decompression. Even so - I am *so* much better off than I was before the revision! Ok, I don't lead a normal life for a 32 yr old, but it's really not so bad - I can do most things that I want to even if not in the same quantity or the same speed as someone without any back troubles. I'm getting married in a couple of weeks time, and we're hoping to have kids, not something I could possibly h! ave contemplated in the state I was in, but feel happy to tackle now. I'm still contemplating, if I can build enough muscle strength at the gym, trying out various things like rock climbing. If I can get fit enough to feel safe to do it I'll do a diving course or two so that I can go on some of the courses my cousin arranges.

We have to take things slowly, but in the past year some of the things I've done to the house with the other half have included ripping a ceiling down, building 2 stud walls, laying a laminate floor, cutting and fitting skirtingboard and coving, cutting and fitting a windowsill, wallpapering that room and painting the necessary bits. Some things have had to be handed over to him - I'm not going to be painting any more ceilings. And when it came to refitting the ceiling we ripped down, we had a friend come round to help hang the new one - I just made regular cuppas and laughed at the swearing to be heard from upstairs *hehehe* And I certainly didn't move fast on any of the bits that I did do. But the point is that I was able to do them, and more to the point, as long as I was careful, I didn't even need to take painkillers to be able to do them, or afterward. I can say without doubt that the surgery gave me a life back - maybe not ! quite the one I had before, but hey, I'm glad for what I've got )

Sorry for rattling on for so long - hope that helps a bit anyway.

titch

-- Something unknown is doing we don't know what

[Guest guest]

Hi Joyce...

I don't think there's any formal definition of " scoliosis revision

surgery " , but I think it's generally used for anyone needing

additional fusions, replacement of rods, addition of rods, etc. I'm

not even sure what a tritium rod is.

--

>

> Can anyone answer this question? Can scoliosis patients with

tritium rods ever need revision surgery? Unless I have missed

something, everyone having revision surgery have Harrington Rods.

> Joyce E

[Guest guest]

, I think she meant "titanium".

[Guest guest]

Thank you Carole,

That's the second time you pulled me out of a misspelled word. And I knew better!

Joyce E

Re: [ ] Re: How I feel post revision

, I think she meant "titanium".

[Guest guest]

Hi Joyce...

My understanding is that it's difficult to position the patient

correctly for surgery, with the perfect amount of lordosis. Dr. Hu

told me that even the best surgeons have all had patients for whom

they created too little or too much lordosis.

--

>

> Hi Theresa,

> How did you get out of alignment in one year? I thought with

today's technology all of that was taken into account and flatback or

any complications like leaning over were a think of the past. I

thought that since I had my scoliosis deformity surgery last year that

I would not have to worry about the things that are coming to the

surface for people who had surgery in the 70's or 80's. I couldn't go

through another surgery. Ever.

> Joyce E

[Guest guest]

,

Is it immediately known if there is to much or too little lordosis?

Thank you

Joyce E

[ ] Re: How I feel post revision

Hi Joyce...My understanding is that it's difficult to position the patientcorrectly for surgery, with the perfect amount of lordosis. Dr. Hutold me that even the best surgeons have all had patients for whomthey created too little or too much lordosis.-->> Hi Theresa,> How did you get out of alignment in one year? I thought withtoday's technology all of that was taken into account and flatback orany complications like leaning over were a think of the past. Ithought that since I had my scoliosis deformity surgery last year thatI would not have to worry about the things that are coming to thesurface for people who had surgery in the 70's or 80's. I couldn't gothrough another surgery. Ever.> Joyce E

[Guest guest]

Hi Joyce...

Well, they wouldn't know until the patient stood up, and I'm not sure

if it's obvious at first stand or not.

--

>

> ,

> Is it immediately known if there is to much or too little lordosis?

> Thank you

> Joyce E

[Guest guest]

I would say that it can be known with first surgeries at any rate - after mine, when I was first walking around, the nurses kept on at me about how I was going to undo all the good work if I didn't stand up straight..... Little did I know at the time.

Of course it is a lot harder with revisions - I took quite a while to straighten up after mine, because everything was so tight. I would imagine it's harder again with people who are not fused to the sacrum during revision, because you can then get the effects of stenosis if present - I have reached the conclusion after all this time that the lordosis they gave me *is* sufficient, and if I could only get the stenosis under control, I'd be fully upright. On the other hand, had they managed to give me more lordosis, perhaps I'd be upright regardless of the stenosis?

I know I really have had an oddball treatment that isn't like most people's, so things don't necessarily apply at all widely, but in any case my original surgery was in 1994, with segmental hardware that should have avoided the problem, by a surgeon who well knew of flatback (when I was put on the waiting list in 1990, and mum asked if he'd be doing Harrington rods, he explained he wouldn't because " they only treat the problem in 2 dimensions " and " they stop you being a girl shaped girl " and with a lumbar fusion such as mine they would " condemn you to a life of pain and another surgery within 10-15 years " ). Of course, he then managed to give me a kyphosis over the 5 levels he fused. Consequently, even now I cringe in horror whenever I hear of anyone having a first surgery at anywhere other than a major centre with a proper scoliosis specialist - it's all too easy for the same problems to be caused even now with segmental hardware, if the person performing the surgery doesn't know what they're doing. My understanding is that when you are dealing with someone with a larger lordosis, it is possible for even a skilled surgeon to give them fixed sagittal imbalance - I'm dredging my memory here without any resources to back it up (so someone please yell if I'm wrong!), but I'm pretty sure I remember reading that some people cannot handle even a 10 degree reduction in lordosis ie you may take someone who has a 65 degree lordosis, find that by the time you've straightened them out as best you can you've only managed to create a 55 degree lordosis and have them immediately suffering problems with FSI. I'm pretty sure this was said to be a rare incidence, but basically maintaining sagittal balance is a dark art.

-- Something unknown is doing we don't know what

[Guest guest]

---I was reading your post and wondering about the standing up

straight part...after the second surgery do you automatically stand

straight or do you have to force yourself to do that? Does your body

still want to lean forward? ,PA

In , oojackapivvy <oojackapivvy@g...>

wrote:

>

> I would say that it can be known with first surgeries at any rate -

after

> mine, when I was first walking around, the nurses kept on at me

about how I

> was going to undo all the good work if I didn't stand up

straight.....

> Little did I know at the time.

>

> Of course it is a lot harder with revisions - I took quite a while

to

> straighten up after mine, because everything was so tight. I would

imagine

> it's harder again with people who are not fused to the sacrum during

> revision, because you can then get the effects of stenosis if

present - I

> have reached the conclusion after all this time that the lordosis

they gave

> me *is* sufficient, and if I could only get the stenosis under

control, I'd

> be fully upright. On the other hand, had they managed to give me

more

> lordosis, perhaps I'd be upright regardless of the stenosis?

>

> I know I really have had an oddball treatment that isn't like most

people's,

> so things don't necessarily apply at all widely, but in any case my

original

> surgery was in 1994, with segmental hardware that should have

avoided the

> problem, by a surgeon who well knew of flatback (when I was put on

the

> waiting list in 1990, and mum asked if he'd be doing Harrington

rods, he

> explained he wouldn't because " they only treat the problem in 2

dimensions "

> and " they stop you being a girl shaped girl " and with a lumbar

fusion such

> as mine they would " condemn you to a life of pain and another

surgery within

> 10-15 years " ). Of course, he then managed to give me a kyphosis

over the 5

> levels he fused. Consequently, even now I cringe in horror

whenever I hear

> of anyone having a first surgery at anywhere other than a major

centre with

> a proper scoliosis specialist - it's all too easy for the same

problems to

> be caused even now with segmental hardware, if the person

performing the

> surgery doesn't know what they're doing. My understanding is that

when you

> are dealing with someone with a larger lordosis, it is possible for

even a

> skilled surgeon to give them fixed sagittal imbalance - I'm

dredging my

> memory here without any resources to back it up (so someone please

yell if

> I'm wrong!), but I'm pretty sure I remember reading that some

people cannot

> handle even a 10 degree reduction in lordosis ie you may take

someone who

> has a 65 degree lordosis, find that by the time you've straightened

them out

> as best you can you've only managed to create a 55 degree lordosis

and have

> them immediately suffering problems with FSI. I'm pretty sure this

was said

> to be a rare incidence, but basically maintaining sagittal balance

is a dark

> art.

>

> --

> Something unknown is doing we don't know what

>