scoliosis pain

[Guest guest]

Hi Simone,

I have not had scoliosis deformity surgery yet ( I am having that on July 9). I

did have surgery to fuse my neck in 1988 and they used bone from my left hip.

That area is very sensitive. I burn constantly in that area to the point that I

can't sit for long periods of time.

They plan to take bone from my right hip for my upcoming surgery. The doctor

said I shouldn't have that problem but I am so afraid I will have extra pain

after my surgery.

Joyce

bichon4me@...

Scoliosis Pain

Hi

I had my Harrington Rod operation in 1989 and I was 11.

Mr carried this out in the Lord Mayor Treloar Hospital in

Hampshire. I was 76% bent and the operation was a success and now I

am 96% straight which is good

However, I have been having problems with my sciatic nerve that runs

down my left leg, I regularly take Valium and various drugs for pain

and have been suffering daily for the last 5 years.

The main problem is the underneath the scar where they took bone

from, the area is very sensitive to the touch and I get shooting

pains down my leg.

I saw a Dr 2 years ago and have had various MRI scans, my GP in the

UK, said that a lot of my pain was in my mind because he couldnt see

a problem, hence the MRI (I was eventually referred), and this

detected bond fragments that were not collected causing nerve and

muscle pains.

My Rod is also uncomfortable and pokes out at the top, when I saw my

Dr 2 years ago he said I had twisted a further 10 degrees since the

operation, since the Harrington Rod I went into hospital and had a

Steroid operation into the lower scar, this was not very pleasant and

refuse to have this done again.

I was offered this as a standard procedure yearly but it frightened

me, the other option was to have the area numbed but of course there

are side effects to that which I really do not fancy, being only 27

now.

What I joined this group for, was to make sure I am not alone and

hoped someone would have an answer to help cure my fears and pains.

I have reflexology regularly and it helps sometimes, however, it

upsets me that I have pain daily and when I get up from the sofa

struggle to straighten up to stand.

Looking forward to hearing from anyone that has suggestions.

Simone

[Guest guest]

Hi Joyce,

I nearly lost you! Something is happening to my computer and even as I

write, it is going on and off. So please know that I haven't given up on you at

all. I've been having a terrible time with my cervical spine and saw one of the

MDs today. Also, I'm quite medicated and that is not helping, since I dare

not drive, etc. I am thinking of you thought, please know that! I shall be

back in touch and hope that you will be, too.

Sincerely.

Carole M. (the elder)

[Guest guest]

Simone,

Please don't give up because you are getting older. Everyone is getting

older every minute! Someone out there can probably give you some help! I was

57

for my first major back surgery and had a Harrington rod/Luque wire system

installed. My curves had been 98 degrees upper and 87 degrees lower. They were

much improved by the surgery. I soon will be 70 years old and am looking for

even more help. I wan to be able to swim and do the things that are important

to me. Hang in there, keep moving, and never give up OK?

Your new friend,

Carole M. (the elder)

[Guest guest]

Hi Carole

Great to hear from you. I am so glad I joined these groups.

I am a fighter and will never give up, but I just get so down with the pain that

sometimes I want to scream " This isnt fair " , I was always so active and had a

nice figure and I know its through vanity but I just wish I could exercise more

and get fit.

I have problems sitting, walking, standing and laying for too long , and as

gravity takes its course, things tend to droop even more .

I have tried most exercises, been to many gyms and explained the situation and

ended up bed ridden from doing the exercises that the instructor said would be

good for me. I swim daily and that seems to be ok, being weightless in the water

is probably why.

I have been reading the messages posted by some members that do sit ups and

Pilates and dont know how they manage it.

Another concern of my partners and I was childbirth and the whole process I just

cannot visualise myself managing very well at all, I struggle to carry myself

never mind few more bags of sugar, and actually giving birth itself, too scarey

to think about to be honest!!

Well Carole, was lovely to hear from you and the kind words you expressed mean

so much.

Take Care

Simone

Re: Scoliosis Pain

Simone,

Please don't give up because you are getting older. Everyone is getting

older every minute! Someone out there can probably give you some help! I was

57

for my first major back surgery and had a Harrington rod/Luque wire system

installed. My curves had been 98 degrees upper and 87 degrees lower. They

were

much improved by the surgery. I soon will be 70 years old and am looking for

even more help. I wan to be able to swim and do the things that are important

to me. Hang in there, keep moving, and never give up OK?

Your new friend,

Carole M. (the elder)

[Guest guest]

Hi Joyce

I would like to give you some positive input to your situation but as you know,

since having the surgery I have had many complaints over my left leg, and the

area from where the bone graft was taken I cannot touch as it is very sore and

feels like a knife is being stabbed in me.

I have been told it is the Sciatic nerve that causes the problems, as the

message from the brain down to the leg isnt on the right track so to speak. This

I believe is due to nerves being severed during surgery.

I really hope that you do not have to experience more pain, are they able to

take the bone graft from another place in your body rather than the hip? I know

in the UK the operation is no longer carried out in the same way in which they

did with me, this is because of the complaints they have had regarding the

sciatic nerve endings.

Best Wishes, take care

Simone

Scoliosis Pain

Hi

I had my Harrington Rod operation in 1989 and I was 11.

Mr carried this out in the Lord Mayor Treloar Hospital in

Hampshire. I was 76% bent and the operation was a success and now I

am 96% straight which is good

However, I have been having problems with my sciatic nerve that runs

down my left leg, I regularly take Valium and various drugs for pain

and have been suffering daily for the last 5 years.

The main problem is the underneath the scar where they took bone

from, the area is very sensitive to the touch and I get shooting

pains down my leg.

I saw a Dr 2 years ago and have had various MRI scans, my GP in the

UK, said that a lot of my pain was in my mind because he couldnt see

a problem, hence the MRI (I was eventually referred), and this

detected bond fragments that were not collected causing nerve and

muscle pains.

My Rod is also uncomfortable and pokes out at the top, when I saw my

Dr 2 years ago he said I had twisted a further 10 degrees since the

operation, since the Harrington Rod I went into hospital and had a

Steroid operation into the lower scar, this was not very pleasant and

refuse to have this done again.

I was offered this as a standard procedure yearly but it frightened

me, the other option was to have the area numbed but of course there

are side effects to that which I really do not fancy, being only 27

now.

What I joined this group for, was to make sure I am not alone and

hoped someone would have an answer to help cure my fears and pains.

I have reflexology regularly and it helps sometimes, however, it

upsets me that I have pain daily and when I get up from the sofa

struggle to straighten up to stand.

Looking forward to hearing from anyone that has suggestions.

Simone

[Guest guest]

Hi Elder Carole,

I wasn't going to let us stray apart. We just got back from a 4 day cruise. My

hubby wanted to go to the Grand Casino in Biloxi and I talked him into a cruise.

That way he could gamble and I could do....whatever. Thank God for scooters. I

am trying to gain weight for my surgery and what better way than a cruise!

What is going on with your cervical spine? Are you having new problems? I hope

it is not serious.

Joyce

Re: Scoliosis Pain

Hi Joyce,

I nearly lost you! Something is happening to my computer and even as I

write, it is going on and off. So please know that I haven't given up on you

at

all. I've been having a terrible time with my cervical spine and saw one of

the

MDs today. Also, I'm quite medicated and that is not helping, since I dare

not drive, etc. I am thinking of you thought, please know that! I shall be

back in touch and hope that you will be, too.

Sincerely.

Carole M. (the elder)

[Guest guest]

Hello Joyce!

How great to hear from you! And I hope that you had a wonderful vacation!

It seems that my cervical spine is acting up and giving me some new pain --

as if I needed any more! With the help of my doctors, I am coping with it.

I just do not like taking things like Vallium because it throws me off. I

mean big time! I am still hanging in there, though, and hoping that we'll be

able to find something less potent to help me with this neck.

I do hope that you had a reaally great time with your husband! What a nice

thought!

I AM thinking of you, so please keep us posted?

Thanks!

Carole M. (the elder)

[Guest guest]

Hi Carole

Have you ever tried Reflexology for your neck pain, I suffer with pain in my

lower back from my bone graft, sciatic nerve I believe it to be.

I have a wonderful reflexologist that comes to my house very 2 weeks and for an

hour and a half plays with my feet, I feel so much better after each session. I

am not into healing and all that but this does seem to work and I cannot explain

how.

When I first came out of hospital and had my cast off, I was sent to a

reflexologist by my doctor and I had this treatment for a year, now I have got

older I pay to have this done still.

I too have sore shoulders, they get very gritty, I cant put my head back all the

way because something seems to be stopping me and it hurts, I do have massage

for that which I must admit doesnt really give that musch release but feels nice

while having it done!

Anyway, sorry for butting into the conversation but I thought you may like to

try it.

Simone

Re: Scoliosis Pain

Hello Joyce!

How great to hear from you! And I hope that you had a wonderful vacation!

It seems that my cervical spine is acting up and giving me some new pain --

as if I needed any more! With the help of my doctors, I am coping with it.

I just do not like taking things like Vallium because it throws me off. I

mean big time! I am still hanging in there, though, and hoping that we'll be

able to find something less potent to help me with this neck.

I do hope that you had a reaally great time with your husband! What a nice

thought!

I AM thinking of you, so please keep us posted?

Thanks!

Carole M. (the elder)

[Guest guest]

> I dont have health insurance I wasnt aware Scoliosis suffereres can get

> health cover,

Dear Simone,

If you are living in the U.S. your best bet for health insurance is a group

policy. Group policies accept those of us with scoliosis and other conditions.

Usually that means you or your husband needs to work for a not small

company. Government workers usually have this kind of coverage....teaching,

state,

county, federal workers as well as industries that employ craftsmen and many

union industries.

Jolene

[Guest guest]

No, Simone, I have never tried reflexology for my neck. Who does such a

thing. Does one go to somone who gives massages? I have tried accupuncture

for

a bit,though. Can you tell me more? Thanks!

Carole M. (the elder)

[Guest guest]

Hi Carole, I forgot to ask you what your MRI was for. Was it for the pain you

are having in your neck?

BTW, you are such an optimist. You always see the bright side of things. I

hope you are not headed into more physical problems.

Joyce

Re: Scoliosis Pain

Simone,

Please don't give up because you are getting older. Everyone is getting

older every minute! Someone out there can probably give you some help! I was

57

for my first major back surgery and had a Harrington rod/Luque wire system

installed. My curves had been 98 degrees upper and 87 degrees lower. They

were

much improved by the surgery. I soon will be 70 years old and am looking for

even more help. I wan to be able to swim and do the things that are important

to me. Hang in there, keep moving, and never give up OK?

Your new friend,

Carole M. (the elder)

[Guest guest]

Hi Carole

I live in Spain and I called a lady from our local paper and she came to my

house and we got on so well she comes to me regularly. I explained alll my

problems and she concetrates on that area. Reflexology is all feet work.

A masseur could perform reflexology but I would suggest you find someone that

specialises in Reflexology.

http://www.reflexology.org/aor/refinfo/healart.htm

I have enclosed a website for your perusal, as I said before I have been having

Reflexology for years now and find it does help me, and obviously having a

reflexologist that cares helps.

I really hope you can find someone to try this for you, but I must say that

after one session you may not feel the effects, I did not, however after a few

sessions I noticed that my pain was easing and now I have it done as often as I

can (normally every 2 weeks).

Let me know how you get on.

Best Wishes and take care

Simone

Re: Scoliosis Pain

No, Simone, I have never tried reflexology for my neck. Who does such a

thing. Does one go to somone who gives massages? I have tried accupuncture

for

a bit,though. Can you tell me more? Thanks!

Carole M. (the elder)

[Guest guest]

Hi Joyce,

I have had an awful flare-up in my neck. That's why the current MRI. Found

out today that I'll probably be seeing a neurologist re some sort of

solution. I balked about meds. My doctors are absolutely wonderful in trying

to

find (as they say) the right " cocktail " to push back the pain. However, I

currently cannot drive because of meds and I miss my independence. I AM A

SPOILED BRAT AND I WANT IT ALL! There! I said it!

I have " Animal Planet " on while I compute, and still just love those

Bichons, you lucky person!

Love,

Carole

[Guest guest]

Simone,

That is so kind of you! Thank you. What made you call a local newspaper?

To get the story of scoliosis into the " public eye " ? I certainly will visit

the site you sent me and will try to find someone nearby. Due to my current

medications, I have promised not to drive. I would love to feel well enough

to get rid of some of them and take back my independence! Thank you!

Sincerely,

Carole M. (the elder)

[Guest guest]

I thought this is because the nerve strch as this is also the pain I feel after

2 months from the surgery, but I'm really getting better with the nerve strch

medication!!!

Did any of you has a problem with the period after the surgery, I have it twice

a month and doctors told me it is normal to go this way for the first 3 to 6

months.

Heba

Nutty <simonemb1@...> wrote:

Hi Joyce

I would like to give you some positive input to your situation but as you know,

since having the surgery I have had many complaints over my left leg, and the

area from where the bone graft was taken I cannot touch as it is very sore and

feels like a knife is being stabbed in me.

I have been told it is the Sciatic nerve that causes the problems, as the

message from the brain down to the leg isnt on the right track so to speak. This

I believe is due to nerves being severed during surgery.

I really hope that you do not have to experience more pain, are they able to

take the bone graft from another place in your body rather than the hip? I know

in the UK the operation is no longer carried out in the same way in which they

did with me, this is because of the complaints they have had regarding the

sciatic nerve endings.

Best Wishes, take care

Simone

Scoliosis Pain

Hi

I had my Harrington Rod operation in 1989 and I was 11.

Mr carried this out in the Lord Mayor Treloar Hospital in

Hampshire. I was 76% bent and the operation was a success and now I

am 96% straight which is good

However, I have been having problems with my sciatic nerve that runs

down my left leg, I regularly take Valium and various drugs for pain

and have been suffering daily for the last 5 years.

The main problem is the underneath the scar where they took bone

from, the area is very sensitive to the touch and I get shooting

pains down my leg.

I saw a Dr 2 years ago and have had various MRI scans, my GP in the

UK, said that a lot of my pain was in my mind because he couldnt see

a problem, hence the MRI (I was eventually referred), and this

detected bond fragments that were not collected causing nerve and

muscle pains.

My Rod is also uncomfortable and pokes out at the top, when I saw my

Dr 2 years ago he said I had twisted a further 10 degrees since the

operation, since the Harrington Rod I went into hospital and had a

Steroid operation into the lower scar, this was not very pleasant and

refuse to have this done again.

I was offered this as a standard procedure yearly but it frightened

me, the other option was to have the area numbed but of course there

are side effects to that which I really do not fancy, being only 27

now.

What I joined this group for, was to make sure I am not alone and

hoped someone would have an answer to help cure my fears and pains.

I have reflexology regularly and it helps sometimes, however, it

upsets me that I have pain daily and when I get up from the sofa

struggle to straighten up to stand.

Looking forward to hearing from anyone that has suggestions.

Simone

[Guest guest]

Hi Carole, I hope your visit to a neurologist does not warrant any more surgery.

I know what you mean about not being able to drive. I have not been able to

drive since I developed Charcot's Joint in my right shoulder. That was in

December of '03. I have so much to do and I hate asking even my hubby, who has

lost so much work taking me to doctors and tests, to take me. I am basically

homebound.

Hopefully, when the figure out what your problem is, you will be able to come

off some of those meds. I am praying for you. If we lived closer I would send

my bichon, Sota, over to keep you company.

Joyce

Re: Scoliosis Pain

Hi Joyce,

I have had an awful flare-up in my neck. That's why the current MRI. Found

out today that I'll probably be seeing a neurologist re some sort of

solution. I balked about meds. My doctors are absolutely wonderful in

trying to

find (as they say) the right " cocktail " to push back the pain. However, I

currently cannot drive because of meds and I miss my independence. I AM A

SPOILED BRAT AND I WANT IT ALL! There! I said it!

I have " Animal Planet " on while I compute, and still just love those

Bichons, you lucky person!

Love,

Carole

[Guest guest]

Dear Simone,

I am so sorry that you are not satisfied with the outcome of your surgery.

I cannot even try to evaluate what it is that you speak of, because I do not

know you. I do know that I have had surgery, too, when I was 57 and my

curvatures were 98 and 89 degrees. They were much improved after surgery. I

still

have problems, there is no doubt about that. However, I am so much better

off than I was before. Many doctors are interested in trying to help me get

to another " place " . However, if it takes major surgery, I am not sure I want

to do it. I am so graatefull to be somewhat upright, to be able to breathe

better, to walk better, etc., that I am not so sure what more surgery would do

for me. When I think about the direction I was headed in before surgery, I

have to know that right now I am definitely headed in a far better direction.

I am not sure, anymore, what further surgery would do for me. I am

extremely happy that I have had what I have had! More power to you! Go for

what

you think that you need! My very best wishes to you. You won't find a better

friend than Llweyn!

Sincerely,

Carole

[Guest guest]

Gosh, Joyce and Simone,

I'm so sorry that you both have such pain from the site of the bone for the

graft. That is one thing that has never really bothered me! And I had a lot

of bone taken from the left " fascia? " There was a name my doctor always

used, and I felt lucky that it healed fairly well. Also I always measured that

discomfort against the fact that I was straighter and healthier than I had

been before my scoliosis surgery! Maybe that is where we differ! I was just

so grateful to be upright and alive! I still feel that way.. I have some

new problems, granted, but I have never really concentrated on pain from the

sugery that I felt put me among the " real people " .

I sincerely hope that you both find relief and know that all this help that

the medical people are able to give us now is so much more than could have

been done not too many years ago!

My love to you both. I pray for comfort for you both.

Carole M. (the elder)

[Guest guest]

Thank you for your kind note, friend! I certainly would accept a good

" lapping " from your little friend, Sota. Today I stupidly decided to give my

calico cat, , a nice bath. She didn't think it was so nice, afterall. I

have a black and blue arm to show her feelings about the bath! I told you I've

lost my marbles! Give Sota a hug from me?

Thanks!

Carole

[Guest guest]

Hi Carole

Sorry I have not written for ages but I have had family on holiday for a week so

we have been busy swimming anf sunbathing etc!

I am pleased that you liked the information I sent and please make sure you keep

in touch to let me know how you get on.

Best Wishes

Simone

Re: Scoliosis Pain

Simone,

That is so kind of you! Thank you. What made you call a local newspaper?

To get the story of scoliosis into the " public eye " ? I certainly will visit

the site you sent me and will try to find someone nearby. Due to my current

medications, I have promised not to drive. I would love to feel well enough

to get rid of some of them and take back my independence! Thank you!

Sincerely,

Carole M. (the elder)

[Guest guest]

I had never talked with people about tne scoliosis curves and

rotation. When I came to San Diego I had considerable change in the

location of the whole spine and considerable increase in the curves.

The pain increased so that I was in tears half the day. My

cardioligist sent me to a pain management doctor. I had never

encountered a pain management clinic. Then I was referred to a pain

management doctor who treated me by implanting a pump in my stomach

and a catheter that delivered a mix of four or five medications to

the fluid around my spine. The pump is a system developed by

Medtronics. I had been told by my doctors in Boston that I would not

deteriorate after 40 or 45 years of age. I am now 70 and the

deterioration has been considerable. I now see a need for a support

group.

barbara99@... or post any replies in the chat group. I have

never belonged to a chat group and don't know how it works.

[Guest guest]

Dear Barbara,

you wrote: " I had been told by my doctors in Boston that I would not

deteriorate after 40 or 45 years of age. I am now 70 and the

deterioration has been considerable. "

If you don't mind me asking.... Are you speaking of the spine deteriorating,

the disks, or are you referring to the pain pump? Have you ever had

scoliosis surgery?

Jolene

[Guest guest]

Dear Jolene:

The deterioration that has occurred with scoliosis has been my spine. The

thoracic and lumber curves increased to 42 and 38. The rotation became more

pronounced. And finally, I don't believe what happened to me, the whole

spine, curves and all moved to the left. Five years ago I had a one inch

shoe height increased on my left shoe. Now I have to increase the height of

the shoe on the right and remove all the shoes I own with an increase on the

left. As a result of these changes, pain has increased and intensified. I

also have pain just about every where. The pump was installed two years ago

and without it I would be on my back in bed all day. Walking is now more

difficult than in the past but thanks to the pump I can walk when I use a

cane or a walker. I have never had spine surgery. The disk at the depth of

the bottom curve on an xray to me looks squished out. I don't understand

what is happening to me now in my seventies.

Re: scoliosis pain

> Dear Barbara,

> you wrote: " I had been told by my doctors in Boston that I would not

> deteriorate after 40 or 45 years of age. I am now 70 and the

> deterioration has been considerable. "

> If you don't mind me asking.... Are you speaking of the spine

deteriorating,

> the disks, or are you referring to the pain pump? Have you ever had

> scoliosis surgery?

> Jolene

>

>

>

>

[Guest guest]

Dear Barbara,

42 and 38 curves aren't terribly big at your age (70). After our teens

scoliosis spines can gain 1 or 2 % a year if our curves are going to progess.

If

your scoliosis was 30% at 20 years old, it would be more like 80 % today if it

progressed-not 42%. Many women without a history of scoliosis as a child or

teen suddenly get diagnosed with another kind of scoliosis after menopause

because their disks deteriorate due to age-it is not uncommon at all. So maybe

it's not the size of the curves, but the condition of the disks or a herniated

disk or something. I'm not a doctor but I wonder what kind of doctor you are

seeing now for that pain. I heard of neurologist and some experts in scoliosis

that will still operate on 70 year old disks/spine if that is what is in your

best interest. But disk surgery is much easier than spine fusion if that is

the problem.

Jolene