Re: New to group, in pain

[Guest guest]

Hello all ,

 

 I see we have a few younger members here looking for answers . I can semi help

i think . For surgery I am one of the younger ones , but not too young LOL I'm

45 . Female with two kids one 16 the other 26 .

 

 I found out I had scholiosis at 13 , I decided no brace or any treatment .

around 18 I started having problems but found no solution. My curve got worse as

I ages and ended up with various disk problems hip problems and knee problems .

What brought me to a surgeon at 44 was my hip I could no long sit for any period

of time and my hip ofter slipped out of place .

 

 Pretty much every doctor dismisses scholiosis as non important . Most never see

severe enough cases to warrent farther look . They are not taught a lot about it

in school so it seems they are uncaring . being military made it hard for me to

find someone but my PA finaly decided I had been  in there enough for pain that

she found m e a surgeon . We decided to go ahead with after I thougth about it a

month .

 

 The roas to recovery from the surgery was awful , I'm not going to lie it was

the worst thing I ever felt . a year later I still have pain from a nerve that

got damaged during the surgery . There is no cure for that , its treated with

percocet and a experimenatl procedure called Capsaion .

 

 My life for a long time was hindered because of pain from my back . I encourge

those younger women with children to find a good surgeon and talk to him about

your quality of life . They do not take this surgery lightly and I encourge you

to think long and hard about it . The recovery is a full six months on limited

activity . the first month home you will not be able to be left alone . not even

a shower can be done alone .after that it gets better but the cast / brace will

be one for a full six months and it is a full yr for complete recovery as long

as you have no problems like I and others did . My problems are no fixable and

were not prevenable its a risk you take with any surgery .

 

 My curve was T9 - Sacrum . for those that don't know that is the shoulder blade

down to the butt crack . my scar goes right into my ass LOL I wish you the best

of luck and please fight for the help you need . If a surgeon doesnt feel the

surgery will work well on you they wont do it . It is a ,MAJOR  operation and

they do not take it lightly . only if they feel they will give you relief and

help you will they do it . Othewise the pain you feel now can be worse then

before with no options to fix it . Consult a real speciaist in spinal surgery .

Good luck carol

[Guest guest]

Dear ,

Could be those " specialists " only deal with children's scoliosis-it's

easier to " fix " . Without knowing your degree of curves you aren't going to

know what direction to go. A primary care dr. or orthopedic dr/surgeon will not

measure the true curve correctly so you need to find an adult scollisis

surgeon (not a chiro) to get x-rayed per his instructions. Have you looked

at the _www.srs.org_ (http://www.srs.org) Find a Specialist? It's a good

place to start.

Jolene Morell

[Guest guest]

I'm not an expert on this, but having had 3 spinal fusions as a child and

chronic back problems for the past 20 years (I'm 57), it sounds like the first

and simplest thing to do is have someone work on your muscles. I have had

horrible pain in my back and butt -- all muscle related-- and have found great

relief with massage, trigger point work, and my wonderful physical therapist. I

also wear custom orthotics in my shoes. I have to point out that all these

treatments have not changed the root cause of the various pains which is

scoliosis, kyphosis, spinal stenosis, etc, etc. But I have been able to live

relatively comfortably because of all these treatments.

When my back acted up on me in 1991 (I had to go on disability because I was in

agony and could not function at work), I went to several scoliosis surgeons.

Scoliosis surgeons can do marvelous things to correct our spines but I don't

believe they can deal effectively with chronic pain. What they do is operate;

they don't treat muscle pain. I honestly don't think they understand muscle

pain. One surgeon wanted to operate on me, and thank God I did not go through

with the operation because through trial and error I have found good people who

have been able to help me.

If massage and other muscle work does not help, you might try a physiatrist (a

physiatrist, not a psychiatrist -- the words look alike!), who might be able to

pinpoint the source of your pain.

I guess what I'm saying is try the simplest, least invasive treatments first.

If one type of treatment does not help, another might. Surgery would be my last

resort.

Hope this helps. Good luck!

Pat

[Guest guest]

Hello,

I agree that surgery should be your last resort. I am only 29 and have had two

back surgies and I am facing atlleast 2 more, possibly 3-4. Your mind can play

tricks on you number one...even though you are sure it is muscle pain, it could

actually be nerve pain. Try seeing a neurologist and a pain specialist that is a

anesthesiologist alsi so that they can do trigger point injections and maybe

even nerve block injections. The trigger point injections just sting for a few

seconds, so they arent bad and they work wonders on your muscles. I have them

done once a week, but I think average is once a month or so...I have to sleep in

a recliner sitting up because my body won't lay flat, so I basically have a

severe crick in my neck 24/7 that has gotten so bad that I get severe headaches.

The trigger point injections (also called TPI's for short,) work amazingly for

my neck. My friend swears they help her back, bottom, hips, and legs

too...anyway, follow the last Freecycke members advice too as some forms of pain

management work better than others for different people. You just have to deal

with trial and error until you figure out what works best...

Hope This Helos

Paige

>

> Hi all,

>

> I am not sure if I am doing this right, I just joined the group. I don't know

where else to turn. I was diagnosed with scoliosis at 13 and was treated with a

brace (I don't know my curve degrees and all that). I never had any problems,

except cosmetically, but even then nothing that really impacted my life.

However, starting about 8 months ago (I'm 31 now) I have had pain in what seems

like every muscle in my back (with no trauma or apparent injury). I thought I

pulled something but it has gotten progressively worse, and for the past few

weeks I can hardly do anything and I am in a great deal of pain. I tried going

to two spine specialists who said they specialized in scoliosis and both won't

see me because they don't think I am a surgical candidate (because of my age I

guess? but they've never seen or examined me, so I can't tell how that decision

was made). I don't necessarily want surgery, I just want answers! I'm scared to

exercise because everything seems to make it worse. To be honest, I am not 100%

sure that my scoliosis is causing this, but I would like someone to at least

examine me and help make that determination, you know? Anyway, I'm just

frustrated, and wondering- who do you go to for these issues, if not a spine

specialist? Any advice would be greatly appreciated!

> Thank you for your time,

>

>

[Guest guest]

Pat,

I am glad to hear that you have found relief with massage and trigger point

work. I had my spine fused from T4 - L3 over 30 years ago and have been

suffering a lot of pain for the past 5 years. I went to a physiatrist just

this week and she said I am one big muscle knot from the top of my neck to

the bottom of my backside. She is sending me to get deep muscle massage and

other physical therapy. I know from my own trial and efforts that

stretching and my own limited ability to massage my muscles does give me

much relief - if only temporarily.

Hearing from you at this point in my search for relief was wonderful and it

reassured me that I am on the right track.

Good Luck to you in managing your pain,

Jeanne

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of daisydoodles@...

Sent: Thursday, July 28, 2011 8:10 PM

Scoliosis Treatment

Subject: Re: New to group, in pain

I'm not an expert on this, but having had 3 spinal fusions as a child and

chronic back problems for the past 20 years (I'm 57), it sounds like the

first and simplest thing to do is have someone work on your muscles. I have

had horrible pain in my back and butt -- all muscle related-- and have found

great relief with massage, trigger point work, and my wonderful physical

therapist. I also wear custom orthotics in my shoes. I have to point out

that all these treatments have not changed the root cause of the various

pains which is scoliosis, kyphosis, spinal stenosis, etc, etc. But I have

been able to live relatively comfortably because of all these treatments.

When my back acted up on me in 1991 (I had to go on disability because I was

in agony and could not function at work), I went to several scoliosis

surgeons. Scoliosis surgeons can do marvelous things to correct our spines

but I don't believe they can deal effectively with chronic pain. What they

do is operate; they don't treat muscle pain. I honestly don't think they

understand muscle pain. One surgeon wanted to operate on me, and thank God I

did not go through with the operation because through trial and error I have

found good people who have been able to help me.

If massage and other muscle work does not help, you might try a physiatrist

(a physiatrist, not a psychiatrist -- the words look alike!), who might be

able to pinpoint the source of your pain.

I guess what I'm saying is try the simplest, least invasive treatments

first. If one type of treatment does not help, another might. Surgery would

be my last resort.

Hope this helps. Good luck!

Pat

[Guest guest]

I just wanted to thank you all for your responses- it was exactly was I was

looking for!! No one in the medical community here seemed to understand what I

was going through, and it seems that you do! I'm  in PT now and will be calling

a different orthopaedic doctor on Monday to try and follow-up. Thanks again, one

of the worst parts was feeling like I couldn't talk anyone about this, and you

certainly made me feel better. best of luck to all of you!

[Guest guest]

Find a good myofascial release massage therapist to get rid of your muscle

knots, range of motion, and pain even if you are fused. Mine was also was a

former P.T. which helped both of us. Before I booked I talked to him

about my scolioisis and fibromyalgia. If he hadn't been an expert of those I

would have been severely damaged had he attempted a deep muscle massage.

Be sure you don't have fibro before getting a massage and your therapist

is educated and experienced about both.

My body work stalled surgery for about 8 years, but the progression

continued and I was 8 years worse in curves and lungs. Everyone here is

focusing on pain relief and that is good, but I feel that " kicking it down the

road " just affects our lungs, heart, and deformity. I'm an expert on

that-I waited 20 years for the right time. What that meant is the quality of

life and limitations of what I could do got more restricted. Lungs do not

improve once they have been restricted. Meeting in a support group opened

my eyes to women who were more advanced stages/ages. Living with O2 is

do-able but very restrictive. Yes, surgery is easier to recover the younger we

are, and an easier surgery.

List what you can't do now (wash the car, mop, lift an older child, etc)

and ask yourself what will you truthfully be able to do 10, 20, 30 years

from now? Will pain increase in those years? Will Medicare cover surgery

when you need it?

Surgery is always the last resort for surgeons and patients but becoming

home bound from pain and restrictions is barely living.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

How soon after surgery should I look for a massage therapist for my 14 year old?

She is over one month out and is experiencing some muscle pain. Does anyone use

an occupational therapist, too? My doctor has just prescribed walking ... and

lots of it.

Thanks, Melody

>

> Find a good myofascial release massage therapist to get rid of your muscle

> knots, range of motion, and pain even if you are fused. Mine was also was a

> former P.T. which helped both of us. Before I booked I talked to him

> about my scolioisis and fibromyalgia. If he hadn't been an expert of those

I

> would have been severely damaged had he attempted a deep muscle massage.

> Be sure you don't have fibro before getting a massage and your therapist

> is educated and experienced about both.

> My body work stalled surgery for about 8 years, but the progression

> continued and I was 8 years worse in curves and lungs. Everyone here is

> focusing on pain relief and that is good, but I feel that " kicking it down

the

> road " just affects our lungs, heart, and deformity. I'm an expert on

> that-I waited 20 years for the right time. What that meant is the quality of

> life and limitations of what I could do got more restricted. Lungs do not

> improve once they have been restricted. Meeting in a support group opened

> my eyes to women who were more advanced stages/ages. Living with O2 is

> do-able but very restrictive. Yes, surgery is easier to recover the younger

we

> are, and an easier surgery.

> List what you can't do now (wash the car, mop, lift an older child, etc)

> and ask yourself what will you truthfully be able to do 10, 20, 30 years

> from now? Will pain increase in those years? Will Medicare cover surgery

> when you need it?

> Surgery is always the last resort for surgeons and patients but becoming

> home bound from pain and restrictions is barely living.

>

>

> Jolene Morell

> Shop online at _www.InheritedButtons.com_

> (http://www.inheritedbuttons.com/)

>

>

[Guest guest]

My 13 year old just did lots of walking. That is really all I think they

need.

Thanks,

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of Meow Mel

Sent: Sunday, July 31, 2011 8:01 AM

Scoliosis Treatment

Subject: Re: New to group, in pain

How soon after surgery should I look for a massage therapist for my 14 year

old? She is over one month out and is experiencing some muscle pain. Does

anyone use an occupational therapist, too? My doctor has just prescribed

walking ... and lots of it.

Thanks, Melody

>

> Find a good myofascial release massage therapist to get rid of your muscle

> knots, range of motion, and pain even if you are fused. Mine was also was

a

> former P.T. which helped both of us. Before I booked I talked to him

> about my scolioisis and fibromyalgia. If he hadn't been an expert of those

I

> would have been severely damaged had he attempted a deep muscle massage.

> Be sure you don't have fibro before getting a massage and your therapist

> is educated and experienced about both.

> My body work stalled surgery for about 8 years, but the progression

> continued and I was 8 years worse in curves and lungs. Everyone here is

> focusing on pain relief and that is good, but I feel that " kicking it down

the

> road " just affects our lungs, heart, and deformity. I'm an expert on

> that-I waited 20 years for the right time. What that meant is the quality

of

> life and limitations of what I could do got more restricted. Lungs do not

> improve once they have been restricted. Meeting in a support group opened

> my eyes to women who were more advanced stages/ages. Living with O2 is

> do-able but very restrictive. Yes, surgery is easier to recover the

younger we

> are, and an easier surgery.

> List what you can't do now (wash the car, mop, lift an older child, etc)

> and ask yourself what will you truthfully be able to do 10, 20, 30 years

> from now? Will pain increase in those years? Will Medicare cover surgery

> when you need it?

> Surgery is always the last resort for surgeons and patients but becoming

> home bound from pain and restrictions is barely living.

>

>

> Jolene Morell

> Shop online at _www.InheritedButtons.com_

> (http://www.inheritedbuttons.com/)

>

>

[Guest guest]

Agree with walking!! When my son had surgery at 15, walking was the primary

recovery exercise. I think massage, PT, etc would come only if she has other

issues that need to be treated and, hopefully, that won't be necessary if all

goes well.

Re: New to group, in pain

How soon after surgery should I look for a massage therapist for my 14 year

old? She is over one month out and is experiencing some muscle pain. Does

anyone use an occupational therapist, too? My doctor has just prescribed

walking ... and lots of it.

Thanks, Melody

>

> Find a good myofascial release massage therapist to get rid of your muscle

> knots, range of motion, and pain even if you are fused. Mine was also was

a

> former P.T. which helped both of us. Before I booked I talked to him

> about my scolioisis and fibromyalgia. If he hadn't been an expert of those

I

> would have been severely damaged had he attempted a deep muscle massage.

> Be sure you don't have fibro before getting a massage and your therapist

> is educated and experienced about both.

> My body work stalled surgery for about 8 years, but the progression

> continued and I was 8 years worse in curves and lungs. Everyone here is

> focusing on pain relief and that is good, but I feel that " kicking it down

the

> road " just affects our lungs, heart, and deformity. I'm an expert on

> that-I waited 20 years for the right time. What that meant is the quality

of

> life and limitations of what I could do got more restricted. Lungs do not

> improve once they have been restricted. Meeting in a support group opened

> my eyes to women who were more advanced stages/ages. Living with O2 is

> do-able but very restrictive. Yes, surgery is easier to recover the

younger we

> are, and an easier surgery.

> List what you can't do now (wash the car, mop, lift an older child, etc)

> and ask yourself what will you truthfully be able to do 10, 20, 30 years

> from now? Will pain increase in those years? Will Medicare cover surgery

> when you need it?

> Surgery is always the last resort for surgeons and patients but becoming

> home bound from pain and restrictions is barely living.

>

>

> Jolene Morell

> Shop online at _www.InheritedButtons.com_

> (http://www.inheritedbuttons.com/)

>

>

[Guest guest]

I wouldn't do anything else right now, with asking the surgeon, as the body is

still in the initial stages of healing and anything else could damage the

surgery/healing process and the end result might be worse than leaving things

alone and just walk. If pain is still an issue in a year's time, then other

treatment options MIGHT be worth looking at for pain control. But being a month

since surgery, I believe, is part of the healing. Regardless, check with your

doctor/surgeon with your concerns. Llweyn

Sent from my BlackBerry device on the Wireless Network

Re: New to group, in pain

How soon after surgery should I look for a massage therapist for my 14 year

old? She is over one month out and is experiencing some muscle pain. Does

anyone use an occupational therapist, too? My doctor has just prescribed

walking ... and lots of it.

Thanks, Melody

>

> Find a good myofascial release massage therapist to get rid of your muscle

> knots, range of motion, and pain even if you are fused. Mine was also was

a

> former P.T. which helped both of us. Before I booked I talked to him

> about my scolioisis and fibromyalgia. If he hadn't been an expert of those

I

> would have been severely damaged had he attempted a deep muscle massage.

> Be sure you don't have fibro before getting a massage and your therapist

> is educated and experienced about both.

> My body work stalled surgery for about 8 years, but the progression

> continued and I was 8 years worse in curves and lungs. Everyone here is

> focusing on pain relief and that is good, but I feel that " kicking it down

the

> road " just affects our lungs, heart, and deformity. I'm an expert on

> that-I waited 20 years for the right time. What that meant is the quality

of

> life and limitations of what I could do got more restricted. Lungs do not

> improve once they have been restricted. Meeting in a support group opened

> my eyes to women who were more advanced stages/ages. Living with O2 is

> do-able but very restrictive. Yes, surgery is easier to recover the

younger we

> are, and an easier surgery.

> List what you can't do now (wash the car, mop, lift an older child, etc)

> and ask yourself what will you truthfully be able to do 10, 20, 30 years

> from now? Will pain increase in those years? Will Medicare cover surgery

> when you need it?

> Surgery is always the last resort for surgeons and patients but becoming

> home bound from pain and restrictions is barely living.

>

>

> Jolene Morell

> Shop online at _www.InheritedButtons.com_

> (http://www.inheritedbuttons.com/)

>

>

[Guest guest]

Your surgeon would be the best one to tell you when it is safe for your

daughter post-op. I can't express more urgently that it should be a highly

qualified in post-op scoliosismassage therapist to do any post muscle work

and with your surgeon's blessing to avoid damaging her. I would guess a

deep muscle (sport) massage would be out of question post op for way over a

year, at least. since she's in recovery.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

My daughter started her PT about 1 month after surgery, at first mostly massage

and stretching and then onto exercises that would build strength. Her first

round was for about 4 months and we have an order to do it once again to help

more.

na

>

> How soon after surgery should I look for a massage therapist for my 14 year

old? She is over one month out and is experiencing some muscle pain. Does anyone

use an occupational therapist, too? My doctor has just prescribed walking ...

and lots of it.

> Thanks, Melody

>