Re: limitations?

[Guest guest]

Do you get used to not being able to bend? It is that tiring? Can you turn in

the drivers seat of the car to look out the back window? Can you get on you

knees and garden? I like to sleep in the " fetal " position -on myside curled a

bit - that would be impossible?

Thanks Sara

From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite@ . com) >

Subject: Re: pain

_Scoliosis Treatment@ Scoliosis- MeSco_

(mailto:Scoliosis- Medical)

Date: Sunday, April 19, 2009, 9:27 PM

So you have to sleep a lot too? Have you had surgery and/or on

medications? I was doing pretty good until my rods broke and I had to have a 3rd

and

4th surgery. That was over a year ago and I still am so tired! I sleep about

12 hours a night, but then don't have much energy when I'm awake. I'm

healthy other than the scoliosis, and since my surgery that's not even very

severe. I don't know if it's all because of the pain meds I take or if I've

just had too many surgeries. I'm 51 and my 82 year old mother is about at the

same level as I am, energy wise.

____________ _________ _________ __

From: vicci walford <vicciwalford>

Scoliosis Treatment

Sent: Monday, April 13, 2009 7:42:11 PM

Subject: Re: pain

Hi there ,

I too got diagnosed with scoli when I was a teen, it got worse after my

boy was born 10 years ago.

I know how you feel with the fatigue,Im constantly tired,sometimes

sleeping up to 15 hours a day, I know 70 year olds who have more energy than me

its a nightmare,I feel old before my time.Where are you from?

some people on here will disagree with seeing a chiropractor as scoli is

something only specialists should work on.

I am currently on Amatriptyline which is actually an antidepressant but it

does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS

machine and heat and cool packs,but everyone has different painkillers etc.

There are loads of people on here so you are sure to get loads of advice

hun.

I wish you luck

Vicci

____________ _________ _________ __

From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com>

Scoliosis Treatment

Sent: Monday, April 13, 2009 11:07:53 PM

Subject: pain

Hi..my name is and I have never been a part of any chat room

before. The pain from my scoliosis, however, is so severe and unrelenting that I

have to seek out others and ask how they are dealing with the pain. I am

34 and I've had scoliosis since I was a teenager. The degree of pain has

waxed and waned over those many years but has been consistantly worse since

the birth of my second child. My s-curve is about 45 degrees for each curve.

I have acid reflux, shortness of breath and fatigue. I try to walk most

days of at least twenty minutes and visit the chiropractor ever two to three

weeks. I feel like the pain and fatigue is wearing me down and my quality of

life is being compromised. Can anyone offer me any suggestions for help?

Thanks!

************ **Big savings on Dell XPS Laptops and Desktops!

(http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir=

http:%2F% 2Fad.doubl

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[Guest guest]

You get sort of used to it. It's been much worse for me since I had the last

disc fused so my sacrum. But turning to look behind you in a car is very

difficult. I have a mirror I need to install that makes everything behind

smaller which should help for backing out of parking spots. That's the hardest

for me. That and merging. I had my " big " surgery done almost 4 years ago, so I

think this is about as good as it gets. It's hard to pick things up when I'm

sitting. I go to retrieve my purse or something and I can't do it. I have to

move off the seat. I have a hard time in the bath tub because i can't lean

forward. Doing my toenails is hard. So many things. And it is tiring. Even if

you get sort of used to it, it's still an extra effort. But I'll take it over

the pain I had prior to the surgery. I still have pain, but it's not relentless

like it used to be. As for the gardening, you should still be able to do that. I

pick weeds. I get sore in my hips if I'm

down there for long and I get a pain between my shoulder blades if I brace

myself in that position for long. But it can be done. You won't be able to curl

up to sleep. You can bring your knees up, but your back won't curl. Not if your

whole spine is fused. I''m fused from T4-S1.

________________________________

From: Sara Dolan <mollymol6@...>

Scoliosis Treatment

Sent: Tuesday, May 5, 2009 5:03:39 PM

Subject: Re: limitations?

Do you get used to not being able to bend? It is that tiring? Can you turn in

the drivers seat of the car to look out the back window? Can you get on you

knees and garden? I like to sleep in the " fetal " position -on myside curled a

bit - that would be impossible?

Thanks Sara

From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite@ . com) >

Subject: Re: pain

_Scoliosis Treatment@ Scoliosis- MeSco_

(mailto:Scoliosis- Medical)

Date: Sunday, April 19, 2009, 9:27 PM

So you have to sleep a lot too? Have you had surgery and/or on

medications? I was doing pretty good until my rods broke and I had to have a 3rd

and

4th surgery. That was over a year ago and I still am so tired! I sleep about

12 hours a night, but then don't have much energy when I'm awake. I'm

healthy other than the scoliosis, and since my surgery that's not even very

severe. I don't know if it's all because of the pain meds I take or if I've

just had too many surgeries. I'm 51 and my 82 year old mother is about at the

same level as I am, energy wise.

____________ _________ _________ __

From: vicci walford <vicciwalford>

Scoliosis Treatment

Sent: Monday, April 13, 2009 7:42:11 PM

Subject: Re: pain

Hi there ,

I too got diagnosed with scoli when I was a teen, it got worse after my

boy was born 10 years ago.

I know how you feel with the fatigue,Im constantly tired,sometimes

sleeping up to 15 hours a day, I know 70 year olds who have more energy than me

its a nightmare,I feel old before my time.Where are you from?

some people on here will disagree with seeing a chiropractor as scoli is

something only specialists should work on.

I am currently on Amatriptyline which is actually an antidepressant but it

does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS

machine and heat and cool packs,but everyone has different painkillers etc.

There are loads of people on here so you are sure to get loads of advice

hun.

I wish you luck

Vicci

____________ _________ _________ __

From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com>

Scoliosis Treatment

Sent: Monday, April 13, 2009 11:07:53 PM

Subject: pain

Hi..my name is and I have never been a part of any chat room

before. The pain from my scoliosis, however, is so severe and unrelenting that I

have to seek out others and ask how they are dealing with the pain. I am

34 and I've had scoliosis since I was a teenager. The degree of pain has

waxed and waned over those many years but has been consistantly worse since

the birth of my second child. My s-curve is about 45 degrees for each curve.

I have acid reflux, shortness of breath and fatigue. I try to walk most

days of at least twenty minutes and visit the chiropractor ever two to three

weeks. I feel like the pain and fatigue is wearing me down and my quality of

life is being compromised. Can anyone offer me any suggestions for help?

Thanks!

************ **Big savings on Dell XPS Laptops and Desktops!

(http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir=

http:%2F% 2Fad.doubl

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[Guest guest]

Hi, I'm fused T2 to L5.  I don't get 'tired' of not being able to bend.  I use a

long-handled broom and dustpan to sweep.  I can bend find.  Some fused as I am

use the 'golfer's stance' with one leg up in the back.  I spread my legs apart

and can bend down better that way.  As for turning in the driver's seat...  I

turn my whole torso to the left to get out and getting in I sit perpendicular on

the seat and swivel around into the seat with my legs moving together with my

torso as much as possible.  I use my side-view and rear-view mirrors to back

out, and can turn enough to see over my shoulder some if I turn my whole torso

in the seat, even with the seat belt on.  But, I use the mirrors a lot and most

of the time I don't turn around.  I have the side mirrors turned in such a way

as not to have blind spots on either side of the car.  I bend my head down and

look into the driver's side mirror to make sure there are no cars in a left-hand

lane

when I am switching lanes.  I can get on my hands and knees and just today

played a hide and seek game with our gdaughter.  I get down by bending my knees

and placing my hands on the floor and can sit on my side.  This position is

difficult to hold for very long, so I put both legs out in front of me when I

sit on the floor, and when I get too tired for that position, I switch to the

other side or back to the first side.  I manage.  Sleeping in the fetal position

is my favorite way to sleep.  It's also possible to sleep on my back, but NOT on

my stomach, as my back doesn't bend to make that position feasible.  It's

difficult to swim the crawl for the same reason, so the dog paddle and back

stroke the most and basically don't swim, just have fun in the water.

 

If you have any more questions, I'll try to help.

 

Lj  CMT2/scoliosis surgery 2002

From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite@ . com) >

Subject: Re: pain

_Scoliosis Treatment@ Scoliosis- MeSco_

(mailto:Scoliosis- Medical)

Date: Sunday, April 19, 2009, 9:27 PM

So you have to sleep a lot too? Have you had surgery and/or on

medications? I was doing pretty good until my rods broke and I had to have a 3rd

and

4th surgery. That was over a year ago and I still am so tired! I sleep about

12 hours a night, but then don't have much energy when I'm awake. I'm

healthy other than the scoliosis, and since my surgery that's not even very

severe. I don't know if it's all because of the pain meds I take or if I've

just had too many surgeries. I'm 51 and my 82 year old mother is about at the

same level as I am, energy wise.

____________ _________ _________ __

From: vicci walford <vicciwalford>

Scoliosis Treatment

Sent: Monday, April 13, 2009 7:42:11 PM

Subject: Re: pain

Hi there ,

I too got diagnosed with scoli when I was a teen, it got worse after my

boy was born 10 years ago.

I know how you feel with the fatigue,Im constantly tired,sometimes

sleeping up to 15 hours a day, I know 70 year olds who have more energy than me

its a nightmare,I feel old before my time.Where are you from?

some people on here will disagree with seeing a chiropractor as scoli is

something only specialists should work on.

I am currently on Amatriptyline which is actually an antidepressant but it

does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS

machine and heat and cool packs,but everyone has different painkillers etc.

There are loads of people on here so you are sure to get loads of advice

hun.

I wish you luck

Vicci

____________ _________ _________ __

From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com>

Scoliosis Treatment

Sent: Monday, April 13, 2009 11:07:53 PM

Subject: pain

Hi..my name is and I have never been a part of any chat room

before. The pain from my scoliosis, however, is so severe and unrelenting that I

have to seek out others and ask how they are dealing with the pain. I am

34 and I've had scoliosis since I was a teenager. The degree of pain has

waxed and waned over those many years but has been consistantly worse since

the birth of my second child. My s-curve is about 45 degrees for each curve.

I have acid reflux, shortness of breath and fatigue. I try to walk most

days of at least twenty minutes and visit the chiropractor ever two to three

weeks. I feel like the pain and fatigue is wearing me down and my quality of

life is being compromised. Can anyone offer me any suggestions for help?

Thanks!

************ **Big savings on Dell XPS Laptops and Desktops!

(http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir=

http:%2F% 2Fad.doubl

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[Guest guest]

Lana - you continue to be such a source of hope.

I pray when I finish researching, find the right Dr.

and most likely have surgery - it goes like yours.

You also give me courage.  Thanks, Sara

From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite@ . com) >

Subject: Re: pain

_Scoliosis Treatment@ Scoliosis- MeSco_

(mailto:Scoliosis- Medical)

Date: Sunday, April 19, 2009, 9:27 PM

So you have to sleep a lot too? Have you had surgery and/or on

medications? I was doing pretty good until my rods broke and I had to have a 3rd

and

4th surgery. That was over a year ago and I still am so tired! I sleep about

12 hours a night, but then don't have much energy when I'm awake. I'm

healthy other than the scoliosis, and since my surgery that's not even very

severe. I don't know if it's all because of the pain meds I take or if I've

just had too many surgeries. I'm 51 and my 82 year old mother is about at the

same level as I am, energy wise.

____________ _________ _________ __

From: vicci walford <vicciwalford>

Scoliosis Treatment

Sent: Monday, April 13, 2009 7:42:11 PM

Subject: Re: pain

Hi there ,

I too got diagnosed with scoli when I was a teen, it got worse after my

boy was born 10 years ago.

I know how you feel with the fatigue,Im constantly tired,sometimes

sleeping up to 15 hours a day, I know 70 year olds who have more energy than me

its a nightmare,I feel old before my time.Where are you from?

some people on here will disagree with seeing a chiropractor as scoli is

something only specialists should work on.

I am currently on Amatriptyline which is actually an antidepressant but it

does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS

machine and heat and cool packs,but everyone has different painkillers etc.

There are loads of people on here so you are sure to get loads of advice

hun.

I wish you luck

Vicci

____________ _________ _________ __

From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com>

Scoliosis Treatment

Sent: Monday, April 13, 2009 11:07:53 PM

Subject: pain

Hi..my name is and I have never been a part of any chat room

before. The pain from my scoliosis, however, is so severe and unrelenting that I

have to seek out others and ask how they are dealing with the pain. I am

34 and I've had scoliosis since I was a teenager. The degree of pain has

waxed and waned over those many years but has been consistantly worse since

the birth of my second child. My s-curve is about 45 degrees for each curve.

I have acid reflux, shortness of breath and fatigue. I try to walk most

days of at least twenty minutes and visit the chiropractor ever two to three

weeks. I feel like the pain and fatigue is wearing me down and my quality of

life is being compromised. Can anyone offer me any suggestions for help?

Thanks!

************ **Big savings on Dell XPS Laptops and Desktops!

(http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir=

http:%2F% 2Fad.doubl

eclick.net%2Fclk% 3B214133440% 3B36002254% 3Bj)

[Guest guest]

In addressing the limitations that Randie has expressed, there are aids that

can be used to compensate. In the car, for backing up, there is not only

mirrors but back-up cameras that can be used (I'm lost without mine,

especially in the van). Reachers for picking things up, hangers for purses

on tables or I have a shoulder bag where I put the strap over my knee, back

of chair or even on the seat of the chair and sit on the strap. You might be

able to get the insurance to install a walk-in tub as a medical item.

Toe-nails, you can sometimes find long-handle clippers or treat yourself by

getting someone else to do them. Gardening, there are long handle tools to

get those weeds or you can get raised beds put in so it's not so far down.

As I tell my disabled brother, get others to do the things that you find

hard to do and save your energy for the things that you can & enjoy to do.

Asking for help doesn't take away your independence but preserves it.

I would take limitations over pain any day, as the pain wears on the body

and mind a lot faster. Limitations you can always work around by doing

things differently. That's just my opinion.

Llweyn

Re: limitations?

You get sort of used to it. It's been much worse for me since I had the last

disc fused so my sacrum. But turning to look behind you in a car is very

difficult. I have a mirror I need to install that makes everything behind

smaller which should help for backing out of parking spots. That's the

hardest for me. That and merging. I had my " big " surgery done almost 4 years

ago, so I think this is about as good as it gets. It's hard to pick things

up when I'm sitting. I go to retrieve my purse or something and I can't do

it. I have to move off the seat. I have a hard time in the bath tub because

i can't lean forward. Doing my toenails is hard. So many things. And it is

tiring. Even if you get sort of used to it, it's still an extra effort. But

I'll take it over the pain I had prior to the surgery. I still have pain,

but it's not relentless like it used to be. As for the gardening, you should

still be able to do that. I pick weeds. I get sore in my hips if I'm down

there for long and I get a pain between my shoulder blades if I brace myself

in that position for long. But it can be done. You won't be able to curl up

to sleep. You can bring your knees up, but your back won't curl. Not if your

whole spine is fused. I''m fused from T4-S1.

[Guest guest]

I haven't had any of these types of problems due to my Spinal Fusions, if

that helps.

Brande

mymocha@...

Do you get used to not being able to bend? It is that tiring? Can you turn

in the drivers seat of the car to look out the back window? Can you get on

you knees and garden? I like to sleep in the " fetal " position -on myside

curled a bit - that would be impossible?

[Guest guest]

depending on the fusion, you probably won't be able to bend your back itself, I

bend from the waist and if i need to go lower than that I use my legs to bend,I

can turn in the drivers seat but not easily, I don't garden but can get on my

hands and knees to do things but sitting on the floor is very uncomfortable, I

am starting to get used to it. I feels most of the time like I just have a stiff

back that needs to be cracked. My insurance has cut off my terepy so I haven't

had a rub down in over a month so that could have alot to do with my stiffness.

I am still waiting for the day when I will wake up compleatly pain free.

>

>

> I haven't had any of these types of problems due to my Spinal Fusions, if

> that helps.

>

> Brande

> mymocha@...

>

>

> Do you get used to not being able to bend? It is that tiring? Can you turn

> in the drivers seat of the car to look out the back window? Can you get on

> you knees and garden? I like to sleep in the " fetal " position -on myside

> curled a bit - that would be impossible?

>

[Guest guest]

I'm fused from T4 to L3 and have pretty much the same mobility as you, .

It's been 32 years since my surgery and I still have lots of discomfort if I sit

on the floor for any length of time at all. I need a lumbar pillow for sitting

on the couch and good lumbar support in the car. I have developed degenerative

disc disease in my lowest 3 vertebrae and it is causing me lower back pain and

some nerve pain in my right leg and hip. All in all I have done very well, but

as I get older my lower back suffers more and more. My advice to anyone, with

or without scoliosis or spinal surgery, keep your core strong. It will help you

retain your strength and mobility and keep potentially keep pain at a minimum.

Jeanne

Re: limitations?

depending on the fusion, you probably won't be able to bend your back itself,

I bend from the waist and if i need to go lower than that I use my legs to

bend,I can turn in the drivers seat but not easily, I don't garden but can get

on my hands and knees to do things but sitting on the floor is very

uncomfortable, I am starting to get used to it. I feels most of the time like I

just have a stiff back that needs to be cracked. My insurance has cut off my

terepy so I haven't had a rub down in over a month so that could have alot to do

with my stiffness. I am still waiting for the day when I will wake up compleatly

pain free.

>

>

> I haven't had any of these types of problems due to my Spinal Fusions, if

> that helps.

>

> Brande

> mymocha@...

>

>

> Do you get used to not being able to bend? It is that tiring? Can you turn

> in the drivers seat of the car to look out the back window? Can you get on

> you knees and garden? I like to sleep in the " fetal " position -on myside

> curled a bit - that would be impossible?

>

[Guest guest]

I doubt that you'll ever be pain free. I've given up on that hope. I had a brief

period of time where my pain was so minimal I almost felt normal. My movement

was limited (fused from T4-S1) but after my rods broke and I went back for my

3rd and 4th surgery in 4 years, then had to go back just recently because a

screw was in my sacroiliac joint and was removed once I'd fused in the areas I'd

had revision done on, I just don't see myself ever getting back my strength. I'm

now recovering from 3 surgeries. In 5 years I had 5 surgeries. I'm 52 and I feel

82. In 17 years I've had 1.5 years where my pain was minimal. Now I take 30mg

morphine, 20mg oxycodone, 3-4 muscle relaxers, an anti depressent, and I still

hurt all the time. Hopefully I'll heal more in the area where I had the iliac

screw, but in 18 mths it did damage. I'm so worn out from having this body!

Randie

________________________________

From: Slinker <slinkers5@...>

Scoliosis Treatment

Sent: Thu, December 10, 2009 9:20:53 AM

Subject: Re: limitations?

 

I'm fused from T4 to L3 and have pretty much the same mobility as you, .

It's been 32 years since my surgery and I still have lots of discomfort if I sit

on the floor for any length of time at all. I need a lumbar pillow for sitting

on the couch and good lumbar support in the car. I have developed degenerative

disc disease in my lowest 3 vertebrae and it is causing me lower back pain and

some nerve pain in my right leg and hip. All in all I have done very well, but

as I get older my lower back suffers more and more. My advice to anyone, with or

without scoliosis or spinal surgery, keep your core strong. It will help you

retain your strength and mobility and keep potentially keep pain at a minimum.

Jeanne

Re: limitations?

depending on the fusion, you probably won't be able to bend your back itself, I

bend from the waist and if i need to go lower than that I use my legs to bend,I

can turn in the drivers seat but not easily, I don't garden but can get on my

hands and knees to do things but sitting on the floor is very uncomfortable, I

am starting to get used to it. I feels most of the time like I just have a stiff

back that needs to be cracked. My insurance has cut off my terepy so I haven't

had a rub down in over a month so that could have alot to do with my stiffness.

I am still waiting for the day when I will wake up compleatly pain free.

>

>

> I haven't had any of these types of problems due to my Spinal Fusions, if

> that helps.

>

> Brande

> mymocha@...

>

>

> Do you get used to not being able to bend? It is that tiring? Can you turn

> in the drivers seat of the car to look out the back window? Can you get on

> you knees and garden? I like to sleep in the " fetal " position -on myside

> curled a bit - that would be impossible?

>

[Guest guest]

Hi I thought I'd respond to the not being able to bend or getting use to

it...etc...

I had surgery 13 years ago when I was a freshman in High School. I'm fused from

L4-T9. At first I was a bit hesitant on trying anything where I had to bend too

much. Now I'm really just fine. I bend all the time and have no problems with

it. Now if I were to sit on the floor and try to lay down between my legs like

I did prior to surgery that I can't do...but the normal every day bending stuff

I'm fine. I haven't had too much pain associated with the scoliosis or fusion

since I've had it. I have had some left shoulder pain but found out that was

due to carpal tunnel...a whole seperate issue.

I've recently got one of those exercise balls and will lay over it, backbend

style and just stretch out my back. It really feels great.

I think anyone, with a good surgeon, and patience can get back to normal. I was

an EMT for 4 years and have done plenty of heavy lifting and that never bothered

my back either. I quit mainly because I don't want to make it so I can't do

anything in the future by hurting myself further.

Any questions send me an email.

Lara

[Guest guest]

Hi, Brande,

I had my fusion T2 to L5 A/P, July 2005, titanium rods, two for the lumbar curve

that remains and two for the thoracic curve that remains.  I had a great

correction, 65/76 to about 28/33. 

 

Flexibility really depends on how much of a fusion a person has.  One or two

discs will not impede bending very much at all.  A few could make a difference,

especially in the lumbar section.  A top-to-bottom fusion makes bending

impossible to do it the way one could before fusion. 

 

I cannot bend, arch my back, or get my neck back past the top of the spine,

mostly due to not being able to arch my back.

 

With my spine completely fused (except for S1 and my neck), it's impossible to

sleep in the fetal position in a rounded, bent fashion.  I do pull my legs up

and it seems like a fetal position, because I'm 'bending' forward at my hips

and neck.  I haven't felt any difference, though.  I cannot sleep on my

stomach at all.  It is impossible withough a hole in the bed and pillow for my

face and head to rest.  There is pain in the back.

 

Yes, one can garden on the knees, because you bend at the hips.  A garden stool

helps so one can sit.  I play on the floor with my grandchildren and can get up

and down by spreading my legs and walking my hands and arms in and out.  It is

difficult to sit on the floor since my back doesn't arch, but I find ways.  I'm

not able to be in any one position for long, so I'm always changing the way I

sit or lay on the floor.  (It's easier to play with them at the kitchen/dining

room table!)

 

It isn't tiring.  I position my car sideview mirrors so that I have no blind

spots, can look over my shoulder, but it's limited and I use my peripheral

vision a lot.  To get in and out of the car, I put a plastic bag on the seat

and swivel with both legs out the side to get in and to get out.  Driving isn't

difficult, although I do find that cruise control helps relieve leg, foot, hip

and bottom discomforts because one can shift positions and adjust the car seat

and seat back easier without having to keep the right foot on the gas pedal.

 

When I switch lanes to the left, I lean forward to check for cars in my left

sideview mirror, and avoid having to looking over my left shoulder.  When I

switch lanes to the right, I turn slightly in my seat to look over my right

shoulder, and, in combination with the right sideview mirror, I can see if there

are cars to look out for on that side.  When I'm parked and need to pull out of

a parking space, I am more apt to adjust my body so I can actually look to my

left and right.  I have more safety problems pulling out of parking places than

I do changing lanes, mostly because often, there are cars parked on both sides

of my car and I can't see the lanes of traffic very well to reverse out into

them.  In the winter, with snow piles to contend with, I have to make concerted

efforts to make sure I'm pulling out safely by getting out of the car to look. 

Looking before getting into the car doesn't work very well because, I'd still

have to get into my

car and start it up, get the snow off the rear window, trunk and roof, look for

cars, wait for a large break in them before getting back into my car to back

out.  It helps to have the engine started already to save time.  For those

living in no-snow zones, you can only imagine the problems that snow, snow

storms, and snow banks cause!

 

Also, I have Charcot-Marie-Tooth Disease, and scoliosis is a common factor in

CMT:  27% of CMTers have scoli.  It's worth the while to have a blood test for

CMT.  However, a negative test can be deceiving.  Only about 27 types of CMT

can be tested from blood, and there are over 47 types and counting.  But, if it

comes back positive, further testing can be avoided.  There is no treatment or

cure for CMT, other than those that deal with nerve pain, diet and careful

exercise:  in one with CMT, overtiring the muscles destroys the muscles.

CMT is not muscular dystrophy.  It is a cross between MS and ALS, and amazingly

not as common a household acronym the other two are.  CMT is rarely fatal, but

it is a progressive, debilitating, painful problem like MS and ALS are.

 

More information about CMT can be found at the Charcot-Marie-Tooth Association

and the Muscular Dystrophy Association.  The MDA 'covers' CMT because CMT is a

peripheral nerve disease that affects the muscles.

Lj, CMT2h

From: Brande <mymocha@...>

Subject: Re: limitations?

Scoliosis Treatment

Date: Wednesday, December 9, 2009, 6:00 PM

 

I haven't had any of these types of problems due to my Spinal Fusions, if

that helps.

Brande

mymochacharter (DOT) net

Do you get used to not being able to bend? It is that tiring? Can you turn

in the drivers seat of the car to look out the back window? Can you get on

you knees and garden? I like to sleep in the " fetal " position -on myside

curled a bit - that would be impossible?

[Guest guest]

Dear Lara, Please ask your GP about the possibility that the Carpal Tunnel and

the Scoli ARE related as they are just two of the symptoms in CMT.  He should

at thes very least give you the CMT blood test.

 

Lj

From: larafeary <larafeary@...>

Subject: Re: limitations?

Scoliosis Treatment

Date: Thursday, December 10, 2009, 7:54 PM

 

Hi I thought I'd respond to the not being able to bend or getting use to

it...etc...

I had surgery 13 years ago when I was a freshman in High School. I'm fused from

L4-T9. At first I was a bit hesitant on trying anything where I had to bend too

much. Now I'm really just fine. I bend all the time and have no problems with

it. Now if I were to sit on the floor and try to lay down between my legs like I

did prior to surgery that I can't do...but the normal every day bending stuff

I'm fine. I haven't had too much pain associated with the scoliosis or fusion

since I've had it. I have had some left shoulder pain but found out that was due

to carpal tunnel...a whole seperate issue.

I've recently got one of those exercise balls and will lay over it, backbend

style and just stretch out my back. It really feels great.

I think anyone, with a good surgeon, and patience can get back to normal. I was

an EMT for 4 years and have done plenty of heavy lifting and that never bothered

my back either. I quit mainly because I don't want to make it so I can't do

anything in the future by hurting myself further.

Any questions send me an email.

Lara

[Guest guest]

I have had many levels fused.......can't say it is a complete top to bottom

fusion, but many inbetween are fused. It, more or less, did not affect how I

function, I never noticed a major difference. Sure, maybe if I went down a

list of everything specifically possible, I would find some things, but

generally, I haven't noticed a major difference.

Brande

mymocha@...

Flexibility really depends on how much of a fusion a person has. One or two

discs will not impede bending very much at all. A few could make a

difference, especially in the lumbar section. A top-to-bottom fusion makes

bending impossible to do it the way one could before fusion.

I cannot bend, arch my back, or get my neck back past the top of the spine,

mostly due to not being able to arch my back.

With my spine completely fused (except for S1 and my neck), it's impossible

to sleep in the fetal position in a rounded, bent fashion. I do pull my legs

up and it seems like a fetal position, because I'm 'bending' forward at my

hips and neck. I haven't felt any difference, though. I cannot sleep on my

stomach at all. It is impossible withough a hole in the bed and pillow for

my face and head to rest. There is pain in the back.

Yes, one can garden on the knees, because you bend at the hips. A garden

stool helps so one can sit. I play on the floor with my grandchildren and

can get up and down by spreading my legs and walking my hands and arms in

and out. It is difficult to sit on the floor since my back doesn't arch, but

I find ways. I'm not able to be in any one position for long, so I'm always

changing the way I sit or lay on the floor. (It's easier to play with them

at the kitchen/dining room table!)

It isn't tiring. I position my car sideview mirrors so that I have no blind

spots, can look over my shoulder, but it's limited and I use my peripheral

vision a lot. To get in and out of the car, I put a plastic bag on the seat

and swivel with both legs out the side to get in and to get out. Driving

isn't difficult, although I do find that cruise control helps relieve leg,

foot, hip and bottom discomforts because one can shift positions and adjust

the car seat and seat back easier without having to keep the right foot on

the gas pedal.

When I switch lanes to the left, I lean forward to check for cars in my left

sideview mirror, and avoid having to looking over my left shoulder. When I

switch lanes to the right, I turn slightly in my seat to look over my right

shoulder, and, in combination with the right sideview mirror, I can see if

there are cars to look out for on that side. When I'm parked and need to

pull out of a parking space, I am more apt to adjust my body so I can

actually look to my left and right. I have more safety problems pulling out

of parking places than I do changing lanes, mostly because often, there are

cars parked on both sides of my car and I can't see the lanes of traffic

very well to reverse out into them. In the winter, with snow piles to

contend with, I have to make concerted efforts to make sure I'm pulling out

safely by getting out of the car to look. Looking before getting into the

car doesn't work very well because, I'd still have to get into my

car and start it up, get the snow off the rear window, trunk and roof, look

for cars, wait for a large break in them before getting back into my car to

back out. It helps to have the engine started already to save time. For

those living in no-snow zones, you can only imagine the problems that snow,

snow storms, and snow banks cause!

Also, I have Charcot-Marie-Tooth Disease, and scoliosis is a common factor

in CMT: 27% of CMTers have scoli. It's worth the while to have a blood test

for CMT. However, a negative test can be deceiving. Only about 27 types of

CMT can be tested from blood, and there are over 47 types and counting. But,

if it comes back positive, further testing can be avoided. There is no

treatment or cure for CMT, other than those that deal with nerve pain, diet

and careful exercise: in one with CMT, overtiring the muscles destroys the

muscles.

CMT is not muscular dystrophy. It is a cross between MS and ALS, and

amazingly not as common a household acronym the other two are. CMT is rarely

fatal, but it is a progressive, debilitating, painful problem like MS and

ALS are.