Re: leaning forward off balance and gait

February 15, 2004

Dear Sharon,

I have been watching everyone's post on gait with interest. I had revision 14

months ago and following the surgery I had to get rid of all my shoes, they hurt

to wear. I walk differently and don't wear out the inside edge of my shoes

anymore. I know following revision my stride lenght is much shorter, has anyone

else experienced this too?

Denver

leaning forward off balance and gait

-

have you ever thought to ask one of your docotors to do a gait analysis of

you. Hospitals do it especially for children that are having their legs

shortened/lengthened or manipulated. Why is it the older population doesn't

deserve that intense degree of scrutiny to try and get " IT " right. Thinking

back, did my revision surgeon ever ask me to walk up and down hallways and

scrutinize how I walk. NO. Just stand turn touch your toes walk 5 feet walk

back. sit and talk about it all and make a decision based on 2 minutes of

visual cue and some films to cut open and revise the human spine. Why

aren't the biomechanics studies a bit more intensely?

wishing you many peaceful moments

TwistedSister in NJ

1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback

Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints,

2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical

bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral

Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal

** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

Harrington Rod scoliosis people and other post-op multiple spine surgery

people may interested in the following website dedicated to Flatback

Syndrome and revision/salvage spine surgery... " Salvaged Sisters of

Scoliosis " website on Delphi Forums at:

http://forums.delphiforums.com/adultscoliosis/messages

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

February 15, 2004

-

I, too, had revision surgery 14 months ago and have noticed some

of the problems you talk about. I can't wear any of my old shoes and

have had to purchase more comfortable ones that are quite ugly. For

some strange reason, the surgery seems to have aggravated my

inclination to develop bunions which further complicates the foot

issue. Also, I wear out my shoes at the outer heel. I also have

noted that I can no longer take long strides when walking and have

balance problems. I take a water walking class and am always

bringing up the rear!

I have other problems post surgery which I won't bore you with,

but they are similar to those is experiencing, although not

as severe.

Hope this answers your question. a

> Dear Sharon,

>

> I have been watching everyone's post on gait with interest. I had

revision 14 months ago and following the surgery I had to get rid of

all my shoes, they hurt to wear. I walk differently and don't wear

out the inside edge of my shoes anymore. I know following revision my

stride lenght is much shorter, has anyone else experienced this too?

>

> Denver

> leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Hi Sharon,

Just read your post re " getting fixed " . You know, I've begun to wonder if

" getting fixed " is actually worth it! I actually cannot remember a truly

satisfied consumer of this particular surgery. My gait is already a problem.

My

center is off and I cannot walk a straight line. I always know that I am

wearing two of the same shoes and, frankly, my current pain regimen is not as

awful

as some have been. Soooooo, it's going to take some salesmanship to sell me

the revision surgery. To date, I have only one scoliosis surgery.

Carole M.

February 16, 2004

Oh, a,

I do hope that your surgery was worthwhile?

Carole M. the elder

February 16, 2004

-

I wish I could offer you some solutions to getting around your

new body, but I have the same problems and I, too, would like to know

from others if they have found solutions. I am fused from T7 to S1.

As I mentioned in a previous post to you, I have problems with shoes

and can't wear any of my old shoes. I have to have shoes that I can

step in (with a long handled shoehorn)or, sometimes, can wear shoes

with a velcro fastener.

I can't put on stockings and continue to use a sock aid for

socks. Shaving my legs is infrequent because it's so difficult. I

do what I can in the shower, and then afterwards, use a mirror to see

what I have missed, stretching myself as much as possible to get the

loose hairs. Baths are out of the question. Six months after my

revision surgery (14 months ago), I got into a hottub, slipped

backwards from my upper torso and went under water. Fortunately,

someone was in the tub to pull me out. It continued to be very

uncomfortable in the tub and not relaxing at all since I was grasping

the sides very tightly to keep from drowning. Now I use the

whirlpool at the gym and hang onto a railing, but I dare not let go!

But I won't take a bath at home; I'm afraid I won't be able to pull

myself out.

I still use a dressing stick in order to get into my pants, but

not always. Shopping for clothes is a drag.

My biggest problem is getting into and out of sofas and soft

chairs. I'm convinced it's a combination of the upper torso

correction which bends backwards slightly and my abdomen which has

become quite large and bloated and doesn't allow me to tighten it in

order to raise myself up. I eventually make it, but I look like a

beached seal. (The backwards tilt makes it a little inconvenient

when driving my car.)

Would love to hear how others have (or haven't) solved these

problems. a

> > Dear Sharon,

> >

> > I have been watching everyone's post on gait with interest. I

had

> revision 14 months ago and following the surgery I had to get rid

of

> all my shoes, they hurt to wear. I walk differently and don't

wear

> out the inside edge of my shoes anymore. I know following

revision my

> stride lenght is much shorter, has anyone else experienced this

too?

> >

> > Denver

> > leaning forward off balance and

gait

> >

> > -

> >

> > have you ever thought to ask one of your docotors to do a

gait

> analysis of

> > you. Hospitals do it especially for children that are

having

> their legs

> > shortened/lengthened or manipulated. Why is it the older

> population doesn't

> > deserve that intense degree of scrutiny to try and get " IT "

> right. Thinking

> > back, did my revision surgeon ever ask me to walk up and

down

> hallways and

> > scrutinize how I walk. NO. Just stand turn touch your toes

walk

> 5 feet walk

> > back. sit and talk about it all and make a decision based

on 2

> minutes of

> > visual cue and some films to cut open and revise the human

> spine. Why

> > aren't the biomechanics studies a bit more intensely?

> > wishing you many peaceful moments

> > TwistedSister in NJ

> > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery

for

> Flatback

> > Syndrome, 1998 Post Traumatic Stress Disorder, 1999

> Degenrative SI Joints,

> > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed,

2001

> Cervical

> > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002

Adhesions,

> 1993 Mitral

> > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> > 2003 Interstitial Cystitis, May 2003 Anterior spine

hardware

> removal

> > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> > Harrington Rod scoliosis people and other post-op multiple

> spine surgery

> > people may interested in the following website dedicated to

> Flatback

> > Syndrome and revision/salvage spine surgery... " Salvaged

> Sisters of

> > Scoliosis " website on Delphi Forums at:

> > http://forums.delphiforums.com/adultscoliosis/messages

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

ads

> or endorse any advertised products.

> >

> > --------------------------------------------------------------

----

> ------------

> >

February 16, 2004

What an interesting question, Barbara. I have a terrible time wearing dress

shoes, if I can even find them to fit. I thought it was just from putting on

weight, and my feet getting wider and flatter (from going around in stocking

feet a lot???). At age 20 I could usually wear size 7 1/2, normal width, and

actually went places by Boston subway -- lots of walking -- in cheap high heel

sandals (maybe 2 " heels). I also weighed maybe 115-120; I didn't think much

about my weight. Today, at around 145 lbs., I need an 8 to 8 1/2 wide,

depending on the shoe, most dress shoes are too narrow, I can't tolerate high

heels, and even in many " athletic " shoes my toes feel as though they're being

pinched, and my big toe is being pushed toward my others, like it wants to

develop a bunion.

My 77-yr.-old father has nasty-looking bunions (I guess that's what they are).

And he has Harrington rods, too, and what I strongly believe is flatback.

Wow, I'd never really connected the foot stuff to the flatback before. Makes

sense, though.

Oh, and I think someone mentioned shoe soles and heels wearing out on the

outside of the foot. It seems like mine have always done that.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Hi...

Those of you who are bothered by the change in gait may get some

improvement with therapy:

http://www.lwwonline.com/article.asp?ISSN=0362-2436 & VOL=28 & ISS=16 & PAGE=1836

Regards,

February 16, 2004

If I can say anything positive about flatback, it sure makes it easy to reach

one's legs and feet! I suppose it also helps to be so crooked that your ribs

fit inside your pelvis in front and you can easily rest your elbows on your lap!

All these stories of inaccessible body parts makes me that much less interested

in getting " fixed " .

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Dear a,

I have been fused to the sacrum for 2 years, and fused all the way up to T-1

for fourteen months, and I have found that the fusing up to T-1 has been the

hardest in terms off what I can do. I miss having that top part of my spine

bendable, I could manage better with just that much more unfused. How is sitting

or getting out of cars for you? I am fine in Mini Vans/ SU.V.s, but when you try

to get me in cars low to the ground I have trouble. My husband has a Ford

Taurus, and I can really pull a muscle trying to fold myself up to get in or out

of it. The shape of the back of the seat and the angle can also do me in. Chairs

in general have to be selected for comfort, and this year we are going to get

new couches, we will get them with higher legs. I have a 93 Ford Aerostar and I

can comfortably sit in it, so when the motor goes well just put a new one in

it. I hope with time I will learn to get around these things, or at least become

comfortable with my limitations.

Denver

leaning forward off balance and

gait

> >

> > -

> >

> > have you ever thought to ask one of your docotors to do a

gait

> analysis of

> > you. Hospitals do it especially for children that are

having

> their legs

> > shortened/lengthened or manipulated. Why is it the older

> population doesn't

> > deserve that intense degree of scrutiny to try and get " IT "

> right. Thinking

> > back, did my revision surgeon ever ask me to walk up and

down

> hallways and

> > scrutinize how I walk. NO. Just stand turn touch your toes

walk

> 5 feet walk

> > back. sit and talk about it all and make a decision based

on 2

> minutes of

> > visual cue and some films to cut open and revise the human

> spine. Why

> > aren't the biomechanics studies a bit more intensely?

> > wishing you many peaceful moments

> > TwistedSister in NJ

> > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery

for

> Flatback

> > Syndrome, 1998 Post Traumatic Stress Disorder, 1999

> Degenrative SI Joints,

> > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed,

2001

> Cervical

> > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002

Adhesions,

> 1993 Mitral

> > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> > 2003 Interstitial Cystitis, May 2003 Anterior spine

hardware

> removal

> > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> > Harrington Rod scoliosis people and other post-op multiple

> spine surgery

> > people may interested in the following website dedicated to

> Flatback

> > Syndrome and revision/salvage spine surgery... " Salvaged

> Sisters of

> > Scoliosis " website on Delphi Forums at:

> > http://forums.delphiforums.com/adultscoliosis/messages

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

ads

> or endorse any advertised products.

> >

> > --------------------------------------------------------------

----

> ------------

> >

February 16, 2004

I'm so glad to hear you have had some pain relief.

I know just what you mean about that strip on your shin. Since getting fused to

S-1, I have gotten a good deal more wirey than I was at first. I didn't not know

if I would ever shave my legs again, but now I can even clip my toenails. I

can't tell you just how, but I do (in year #3 post-revision).

It's hard to believe that I was very " high-fashion " (at least in my own mind!)

throughout my thirties and a good part of my forties (with time out for bumming

around law school). I used to travel from coast to coast to medical meetings,

interviewing doctors and researchers for publication, in my designer suits and

Jourdan shoes with the spindly little heels. No wonder I now have

bunions, a lovely hammertoe, and very little minimal money or assets of any

kind!

I have myself, however, and have gotten unaccountably fond of myself in my

fifties. That extends to the me that rarely if ever hassles with pantyhose or

heels of any kind. If you can love yourself in pants and very good walking

shoes, you might want to do so for a while.

I would also like to suggest that once you feel comfortable going places and

feel you can sit for an hour or so, one of the very nicest things you can do for

yourself in this condition is to have a professional pedicure. I might even do

so myself, considering I am having a revision next week. I may even go for hot

pink or wicked red toesie-tips. If they really need my toenails (not just my

fingernails) bare to judge whether I am cyanotic, let them get at me with the

polish remover once I am anesthetized! (If any disapproving spinal surgeons or

surgical nurses are reading this post, you can blame it all on Elissa! Elissa

said I could boost my morale at " Modern Nails " before I go under the knife again

next week! It's her fault, all her fault!!!)

Just kidding.

Patience, hope, and upbeat thoughts as you continue to recover. Things will get

better and better and even better (with some plateaus, no doubt). You may well

get beyond that numbness, too. I can not tell you how many of my various body

parts were numb and tingling for months after the last revision. The nerve

cells regenerate, the numbness goes away, and the whole thing becomes a bad

memory or a humorous subject of casual conversation for your exciting new social

life. Hang in there, and please keep us posted.

BTW, I still have my sock-device and my bizarrely long shoehorn but never use

them. Guess I may be using them again for a while after next week's adventure.

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

I swear by my two recliners -- one in the living room, one in my home office.

leaning forward off balance and

gait

> >

> > -

> >

> > have you ever thought to ask one of your docotors to do a

gait

> analysis of

> > you. Hospitals do it especially for children that are

having

> their legs

> > shortened/lengthened or manipulated. Why is it the older

> population doesn't

> > deserve that intense degree of scrutiny to try and get " IT "

> right. Thinking

> > back, did my revision surgeon ever ask me to walk up and

down

> hallways and

> > scrutinize how I walk. NO. Just stand turn touch your toes

walk

> 5 feet walk

> > back. sit and talk about it all and make a decision based

on 2

> minutes of

> > visual cue and some films to cut open and revise the human

> spine. Why

> > aren't the biomechanics studies a bit more intensely?

> > wishing you many peaceful moments

> > TwistedSister in NJ

> > 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery

for

> Flatback

> > Syndrome, 1998 Post Traumatic Stress Disorder, 1999

> Degenrative SI Joints,

> > 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed,

2001

> Cervical

> > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002

Adhesions,

> 1993 Mitral

> > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> > 2003 Interstitial Cystitis, May 2003 Anterior spine

hardware

> removal

> > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> > Harrington Rod scoliosis people and other post-op multiple

> spine surgery

> > people may interested in the following website dedicated to

> Flatback

> > Syndrome and revision/salvage spine surgery... " Salvaged

> Sisters of

> > Scoliosis " website on Delphi Forums at:

> > http://forums.delphiforums.com/adultscoliosis/messages

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

ads

> or endorse any advertised products.

> >

> > --------------------------------------------------------------

----

> ------------

> >

February 16, 2004

Very interesting indeed. I didn't connect my foot problems with my flatback

either.

I am thinking my gait study may shed some light on why I can't wear most shoes.

And whether the bunions and hammertoe are with me for life.

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Yup, you may want to think twice before getting fused to S-1.

Although, oddly enough, I can reach my feet once more. And shave my legs and

the whole bit. I think I have just turned into a contortionist of every part of

my body other than my spine.

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Barbara,

I found a 1 pair of dress shoes that work for me. They are a basic black pump

with a wider, 2 " heel. I can't stand in any shoe that has one of those skinny

heels but the wider heel does work for me.

All the best,

Beth

Revision T10-sacrum 6/00

February 16, 2004

Hi...

As seems to have discovered on her own, I believe that what

anyone can do in terms of shaving their legs and giving themselves a

pedicure has far more to do with how LONG their fusion is, than how

LOW their fusion is. I'm only fused to L3, and don't have flatback,

but can't really give myself a pedicure. (By getting in a hot bath, I

can reach most of my toes, but all I can do to my toenails is a hack

job.)

In terms of whether one should allow a surgeon to fuse their spine to

the sacrum, sometimes it's the only way to get a good outcome. It's

definitely a tough pill to swallow.. If I wasn't going to be out of

pain without fusion to the sacrum, I would personally be willing to

trade some loss of function for that pain. And, while there's always

the possibility that one is going to have problems in the S-I joints,

knees, etc. after fusion to the sacrum, again I would personally be

willing to take that risk if it meant that I'd have less pain.

Regards,

February 16, 2004

Hi ,

I'm not post-revision, but the combination of my hip problems and T5-

sacrum spinal fusion makes me unable to reach my right leg much past

my knee. I use thick rubber bands to secure a razor to a dressing

stick (purchased at a medical supply store). Any long stick with a

razor attached might work just as well or better to allow you to

reach.

I think I've seen a panty hose helper (similar to a sock helper) on

one of the on-line medical supply sites. A google search might turn

one up. I get catalogs from them ocassionally -- if I see anything

about panty hose in the future, I'll post the website or phone #.

Good luck,

loriann

> Dear Barbara,

>

> It was good to hear that other post revision people have the same

challenges as I. I don't usually wear dress shoes, but i too have

found them to be uncomfortable. I am fused from T-1 to the sacrum and

find a lot of things a challenge. I still use a sock helper, have any

of you figured out how to get nylons on, Ive given up. I also just

found out that I can't sit in a bathtub, just can't move around to

get seated, and sitting on my bottom on the floor is an event. I'd

love a tool that could help with shaving my legs since I can't bend,

and can't sit in a tub. I shave only when I have doctors

appointments, I have to contort myself oddly to do it, and then there

is still a strip on the front of my shins I can't reach, not to

mention how weird it is to shave over my numb thigh! I always have to

remind myself that people are not meant to be fused this way and that

I have to learn to get around the drawbacks, which for me are

troublesome but I am so glad to be rid of the awful pain I had pre

revision. I'd love to hear how some of you manage these drawback, who

else can we learn from?

>

> Denver

February 16, 2004

Hi ,

Just thought I'd let you know that in one of the catalogues for the

disabled, (Silvert's, etc.) I noticed that they had a pantyhose sock puller

listed. I did a google search for disability clothing, then order the

various catalogues. The pantyhose puller was like the sock puller except two

were joined together so you do both feet at once. I've taken the intro to

arthritis through the Arthritis Society and learned all I could about

disabilities and the benefits, etc. for not only myself but my cerebral

palsy brother, since I'm taking over the advocacy for him from my mother. I

hope the info helps.

Llweyn in BC

Re: leaning forward off balance and gait

Dear Barbara,

It was good to hear that other post revision people have the same

challenges as I. I don't usually wear dress shoes, but i too have found them

to be uncomfortable. I am fused from T-1 to the sacrum and find a lot of

things a challenge. I still use a sock helper, have any of you figured out

how to get nylons on, Ive given up. I also just found out that I can't sit

in a bathtub, just can't move around to get seated, and sitting on my bottom

on the floor is an event. I'd love a tool that could help with shaving my

legs since I can't bend, and can't sit in a tub. I shave only when I have

doctors appointments, I have to contort myself oddly to do it, and then

there is still a strip on the front of my shins I can't reach, not to

mention how weird it is to shave over my numb thigh! I always have to remind

myself that people are not meant to be fused this way and that I have to

learn to get around the drawbacks, which for me are troublesome but I am so

glad to be rid of the awful pain

Denver

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Dear Llweyn,

Thankyou so much, Iooked locally to no avail!

Denver

leaning forward off balance and gait

>

> -

>

> have you ever thought to ask one of your docotors to do a gait

analysis of

> you. Hospitals do it especially for children that are having

their legs

> shortened/lengthened or manipulated. Why is it the older

population doesn't

> deserve that intense degree of scrutiny to try and get " IT "

right. Thinking

> back, did my revision surgeon ever ask me to walk up and down

hallways and

> scrutinize how I walk. NO. Just stand turn touch your toes walk

5 feet walk

> back. sit and talk about it all and make a decision based on 2

minutes of

> visual cue and some films to cut open and revise the human

spine. Why

> aren't the biomechanics studies a bit more intensely?

> wishing you many peaceful moments

> TwistedSister in NJ

> 1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for

Flatback

> Syndrome, 1998 Post Traumatic Stress Disorder, 1999

Degenrative SI Joints,

> 2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001

Cervical

> bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions,

1993 Mitral

> Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> 2003 Interstitial Cystitis, May 2003 Anterior spine hardware

removal

> ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> Harrington Rod scoliosis people and other post-op multiple

spine surgery

> people may interested in the following website dedicated to

Flatback

> Syndrome and revision/salvage spine surgery... " Salvaged

Sisters of

> Scoliosis " website on Delphi Forums at:

> http://forums.delphiforums.com/adultscoliosis/messages

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

> ------------------------------------------------------------------

------------

>

February 16, 2004

Mm-hm.

's first revision is apparently already old technique, two years later.

I figure every two years I can hold out may be a quantum leap forward in

surgical technique. Just so long as I don't seem to be worsening my joints.

Re: leaning forward off balance and gait

Hi Sharon,

Just read your post re " getting fixed " . You know, I've begun to wonder if

" getting fixed " is actually worth it! I actually cannot remember a truly

satisfied consumer of this particular surgery. My gait is already a problem.

My

center is off and I cannot walk a straight line. I always know that I am

wearing two of the same shoes and, frankly, my current pain regimen is not as

awful

as some have been. Soooooo, it's going to take some salesmanship to sell me

the revision surgery. To date, I have only one scoliosis surgery.

Carole M.

February 16, 2004

Hello -

Ah! getting in and out of low seating cars! I have a Honda

Accord which is a low car, and I struggle to get in and out of it. I

got into a friend's Toyota RAV4 a few months ago, and that was soooo

much better. I may have to consider that whenever I have enough $$

to buy a new car.

Comfortable chairs is another issue I struggle with. I keep a

pillow in my car, and I take it with me to restaurants, movies,

concerts, etc. Chairs in restaurants that lean back are horrible and

I have been known to refuse to go to a particular restaurant because

my experience will be a negative one.

What do you do when you drop something on the floor? I either

use a reacher, or get down on my knees or bend at the knees, but ONLY

when I have a piece of furniture to pull myself up with.

I hope I will improve, but I'm not holding out for this. I may

have to accept myself with my limitations, though some days are

better than others. It's helpful to me to hear others are having

similar problems (although I don't wish them on anyone); I don't feel

so alone. a

> > > Dear Sharon,

> > >

> > > I have been watching everyone's post on gait with interest.

I

> had

> > revision 14 months ago and following the surgery I had to get

rid

> of

> > all my shoes, they hurt to wear. I walk differently and don't

> wear

> > out the inside edge of my shoes anymore. I know following

> revision my

> > stride lenght is much shorter, has anyone else experienced

this

> too?

> > >

> > > Denver

> > > leaning forward off balance

and

> gait

> > >

> > > -

> > >

> > > have you ever thought to ask one of your docotors to do

a

> gait

> > analysis of

> > > you. Hospitals do it especially for children that are

> having

> > their legs

> > > shortened/lengthened or manipulated. Why is it the

older

> > population doesn't

> > > deserve that intense degree of scrutiny to try and

get " IT "

> > right. Thinking

> > > back, did my revision surgeon ever ask me to walk up

and

> down

> > hallways and

> > > scrutinize how I walk. NO. Just stand turn touch your

toes

> walk

> > 5 feet walk

> > > back. sit and talk about it all and make a decision

based

> on 2

> > minutes of

> > > visual cue and some films to cut open and revise the

human

> > spine. Why

> > > aren't the biomechanics studies a bit more intensely?

> > > wishing you many peaceful moments

> > > TwistedSister in NJ

> > > 1982 Scoliosis Harrington fusion, 1998 Revision A/P

Surgery

> for

> > Flatback

> > > Syndrome, 1998 Post Traumatic Stress Disorder, 1999

> > Degenrative SI Joints,

> > > 2000 Weight Loss Surgery, 2000 Spinal Hardware

Removed,

> 2001

> > Cervical

> > > bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002

> Adhesions,

> > 1993 Mitral

> > > Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,

> > > 2003 Interstitial Cystitis, May 2003 Anterior spine

> hardware

> > removal

> > > ** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **

> > > Harrington Rod scoliosis people and other post-op

multiple

> > spine surgery

> > > people may interested in the following website

dedicated to

> > Flatback

> > > Syndrome and revision/salvage spine

surgery... " Salvaged

> > Sisters of

> > > Scoliosis " website on Delphi Forums at:

> > > http://forums.delphiforums.com/adultscoliosis/messages

> > >

> > > Support for scoliosis-surgery veterans with Harrington

Rod

> > Malalignment Syndrome. Not medical advice. Group does not

control

> ads

> > or endorse any advertised products.

> > >

> > > ----------------------------------------------------------

----

> ----

> > ------------

> > >

February 16, 2004

Hello Carole (the elder) -

Thanks for your concern. Which surgery are you inquiring

about? The recent one in Dec. 2003 was to take out the three top

screws that were protruding from my back so severely. There are

others that are protruding, but not so badly, but it's too soon to

remove them and I'm not sure I even will. The Dec. surgery took less

than one hour; I did it under local anaesthetic but I slept through

it. I went home two hours later. There was no pain at the incision

site. However, during the surgery, I was lying partially on my side,

and for several weeks after, I had terrible pain on the surgically

exposed side of my back. It has dissipated since then.

If you are wondering if I am glad I had the revision surgery

(January, 2003), it's hard to say. I had flatback and was walking

bent over; every ten steps, I had to stop to take a breath since I

suspect I was crushing my lungs. I also had terrible sciatic pain

emanating from L5. So the revision surgery consisted of an osteotomy

at L3 and fusion to the sacram. Both of the aforementioned problems

were resolved. Now I have a whole new set of problems. I'm starting

to develop pain in my right leg emanating from the hip, but it's not

sciatic. I am glad to be able walk upright, to be able to breathe

while walking and to be out of the sciatic pain. I've just

substituted one set of miseries for another. a

> Oh, a,

>

> I do hope that your surgery was worthwhile?

>

> Carole M. the elder

>

February 16, 2004

Dear Carole M,

I have found " getting fixed " to be hugely freeing for me and would do it tomorrow

again if needed. I can walk anywhere I want, I am pain free, and have level

shoulders and the hump on my back is greatly reduced. Flatback symptoms have

been with me for twenty years and my series of revisions gave me my life back. I

think revision is a very personal choice and you have to be ready for it. I have

what I would consider daily living challenges, not being able to bend, but would

I trade that for the pain, *%^ & %$#$ no. I just had gone down hill to the point

where I felt like a burden to all around me and I was ready to give surgery a

shot. The idea of a life of pills and a wheelchair didn't appeal to me. My

surgeons ( DR. Anant Kumar and DR. O'Brien) told me like it was, that

this was a huge surgery, and they laid it all out for me , and it was my

decision. I don't regret it for a moment, even though for me it was three

surgeries to get me to pain free land. I wish you the best in your journey thru

Flatback, whatever you decide.

Denver

Re: leaning forward off balance and gait

Hi Sharon,

Just read your post re " getting fixed " . You know, I've begun to wonder if

" getting fixed " is actually worth it! I actually cannot remember a truly

satisfied consumer of this particular surgery. My gait is already a problem.

My

center is off and I cannot walk a straight line. I always know that I am

wearing two of the same shoes and, frankly, my current pain regimen is not as

awful

as some have been. Soooooo, it's going to take some salesmanship to sell me

the revision surgery. To date, I have only one scoliosis surgery.

Carole M.

February 17, 2004

Gee, a,

I'm so sorry to hear that you have traded one set of problems for another! I

have the pain at my SI joints, use a BiPAP machine with oxygen at night due

to the constriction of my lungs, etc., etc. I'm old enough now that I'm not

sure I'd subject myself to another really hard recovery. But, after my hand

surgeries this Spring, I do intend to at least see Dr. Rand again, if only for

follow-up. I'm in the building for my hand stuff, too.

Gee, I wish you much pain relief!

Carole M. (the older)

February 17, 2004

Very ingenious, Lori!