Re: for your information only

December 30, 2009

Barbara,

Welcome to the group, sorry you are having issues, but you seem to be coping fairly well.

Are you still in Canada? still in London, Ontario? What levels are fused on you?

I know getting to see a qualified doc is a struggle, especially in Canada. I'm glad coping skills and Chiro has helped and kept you comfortable and mobile, all good. Might be good to hear who you have seen in the past since you had your harrington placed. We do have members that are in Canada, a couple who are fairly active. I looked at the Scoliosis Research Society website under London, Ontario in their doc locator and found one doc who might be worth a go see.

LHSC, Hospital

(519) 685-8055

And that is if you are still located there.

Rod removal is seldom a fix to our problems post Harrington Rod, unless it's broken and poking. Many have their harrington Rods removed during revision surgery( fusion to the sacrum), I had mine out, and have it in a bag at home.

You are coping well, but if you get to the point you aren't, or want answers to what you already feel, do try and get to a SRS doc locally, and maybe some of our Canadian friends will chime in with Names of doc's they have seen and liked. Good to know exactly whats going on with you.

Gather up and x-rays, tests. office visits, and surgical reports you can get. Good to have when seeing future doc's.

There is always the option of a trip to the states, office visits aren't that expensive, and might be worth knowing whats going on, if you can't find a doc at home.

Anyway, we look forward to hearing more from you.

Colorado Springs

[ ] for your information only

Hi, I have scoliosis and had the harrington rod procedure when I was 16 in London, Ontario in 1971 by Dr. C. Grainger. I don't know the degree of the curvature but I do know that when I saw my x-ray, I could not believe that a spine could be so crooked. It is in an "S" shape from side to side and literally, my spine was about as crooked as it could get. After the surgery, I had gained 2" in height. They used 2 rods (which I still have) and took a piece of bone out of my hip to fuse the rods in place. I have had 2 children and had an epidural each time, the first time was excellent because the intern actually cared enough to look at my x-ray for better placement of the needle (baby was breach and I needed something). The second time, the nurse was too lazy or whatever and kept jabbing me until she got it in. Since the surgery, I have found that if I gain too much weight or don't stretch properly before getting out of bed, my lower back muscles go into spasm and the rest of the day is quite painful to get through. I have an excellent chiropractor that doesn't do your typical spinal adjustments on me, but he works on the muscles around the lower back to give me relief when I need it. Going to specialists and I use that title sarcastically because if they really are specialists, they would have more answers. The only answer that I got from a specialist that was of any use was not to extend my body backwards... duh?!! No kidding, I already knew that. Otherwise, whatever questions I have asked the answer was always "I don't know". So I try to pay attention to my body and listen when it talks to me. I take a daily vitamin, vitamin D & C and I also take calcium and MSM. Last year I purchased a mirror foam mattress and I absolutely love it. I still stretch my back in the morning, but I have noticeable improvement in my mobility. When I wake, I get into a fetal position and gently pull my knees up to my chin until I feel the lower back muscles relax and stretch and then very slowly ease out of the position and roll out of bed. Over the years, I have had my legs give out on me, pain in the hip where they took the bone that I wasn't supposed to miss (ha), tingling and numbness in my left hand, incredible pain between my shoulders, ribs go out of place often, really stiff neck and shoulders and on and on... I don't regret the surgery because I would probably be in a wheelchair had I not had it. As I say with exercise, massage therapy and chiropractic treatment when necessary, I am doing pretty good for my age. I see other people my age with much worse aches and pains. What is to come, as the specialist says... I don't know, but I'm hoping I can handle it. I would like to know if anyone has had their rods removed after having them for 30 to 40 years and what the consequences were. I am ok right now but a few years ago, there was a lot of clicking around the fusion and the dr's refused to remove the rods. X-rays showed that the fusion was solid. I worry about the future.Barbara

December 30, 2009

Dr mcBroom in Mississauga seems very knowageable on scoliosis. My doctor who did mine is 1966 is no longer with us. I have talked to Dr McBroom- he just did spinal decompresion sugery on my husband usimg staimnless steel rods and he is great,

From: Kirkaldie <.Kirkaldie@...>Subject: Re: [ ] for your information only Received: Wednesday, December 30, 2009, 5:06 PM

Barbara,

Welcome to the group, sorry you are having issues, but you seem to be coping fairly well.

Are you still in Canada? still in London, Ontario? What levels are fused on you?

I know getting to see a qualified doc is a struggle, especially in Canada. I'm glad coping skills and Chiro has helped and kept you comfortable and mobile, all good. Might be good to hear who you have seen in the past since you had your harrington placed. We do have members that are in Canada, a couple who are fairly active. I looked at the Scoliosis Research Society website under London, Ontario in their doc locator and found one doc who might be worth a go see.

LHSC, Hospital

(519) 685-8055

And that is if you are still located there.

Rod removal is seldom a fix to our problems post Harrington Rod, unless it's broken and poking. Many have their harrington Rods removed during revision surgery( fusion to the sacrum), I had mine out, and have it in a bag at home.

You are coping well, but if you get to the point you aren't, or want answers to what you already feel, do try and get to a SRS doc locally, and maybe some of our Canadian friends will chime in with Names of doc's they have seen and liked. Good to know exactly whats going on with you.

Gather up and x-rays, tests. office visits, and surgical reports you can get. Good to have when seeing future doc's.

There is always the option of a trip to the states, office visits aren't that expensive, and might be worth knowing whats going on, if you can't find a doc at home.

Anyway, we look forward to hearing more from you.

Colorado Springs

[ ] for your information only

Hi, I have scoliosis and had the harrington rod procedure when I was 16 in London, Ontario in 1971 by Dr. C. Grainger. I don't know the degree of the curvature but I do know that when I saw my x-ray, I could not believe that a spine could be so crooked. It is in an "S" shape from side to side and literally, my spine was about as crooked as it could get. After the surgery, I had gained 2" in height. They used 2 rods (which I still have) and took a piece of bone out of my hip to fuse the rods in place. I have had 2 children and had an epidural each time, the first time was excellent because the intern actually cared enough to look at my x-ray for better placement of the needle (baby was breach and I needed something). The second time, the nurse was too lazy or whatever and kept jabbing me until she got it in. Since the surgery, I have found that if I gain too much weight or don't stretch properly before getting out of bed, my lower back muscles go

into spasm and the rest of the day is quite painful to get through. I have an excellent chiropractor that doesn't do your typical spinal adjustments on me, but he works on the muscles around the lower back to give me relief when I need it. Going to specialists and I use that title sarcastically because if they really are specialists, they would have more answers. The only answer that I got from a specialist that was of any use was not to extend my body backwards... duh?!! No kidding, I already knew that. Otherwise, whatever questions I have asked the answer was always "I don't know". So I try to pay attention to my body and listen when it talks to me. I take a daily vitamin, vitamin D & C and I also take calcium and MSM. Last year I purchased a mirror foam mattress and I absolutely love it. I still stretch my back in the morning, but I have noticeable improvement in my mobility. When I wake, I get into a fetal position and gently pull my knees up to

my chin until I feel the lower back muscles relax and stretch and then very slowly ease out of the position and roll out of bed. Over the years, I have had my legs give out on me, pain in the hip where they took the bone that I wasn't supposed to miss (ha), tingling and numbness in my left hand, incredible pain between my shoulders, ribs go out of place often, really stiff neck and shoulders and on and on... I don't regret the surgery because I would probably be in a wheelchair had I not had it. As I say with exercise, massage therapy and chiropractic treatment when necessary, I am doing pretty good for my age. I see other people my age with much worse aches and pains. What is to come, as the specialist says... I don't know, but I'm hoping I can handle it. I would like to know if anyone has had their rods removed after having them for 30 to 40 years and what the consequences were. I am ok right now but a few years ago, there was a lot of clicking around

the fusion and the dr's refused to remove the rods. X-rays showed that the fusion was solid. I worry about the future.Barbara

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December 30, 2009

I too saw Dr McBroom at St Mikes Hospital. He seemed very competent in regards to Adult Scoliosis. Sadly there wasn't much he could do for me. He thought maybe down the road when i have nothing left to lose-he might attempt to do salvage surgery on me-but he wasn;t sure. I am sure he has help many many people and if I continue to get worse- he will be the surgeon I would go see first!

Karyn

From: Kirkaldie <.Kirkaldie@ Comcast.net>Subject: Re: [ ] for your information only Received: Wednesday, December 30, 2009, 5:06 PM

Barbara,

Welcome to the group, sorry you are having issues, but you seem to be coping fairly well.

Are you still in Canada? still in London, Ontario? What levels are fused on you?

I know getting to see a qualified doc is a struggle, especially in Canada. I'm glad coping skills and Chiro has helped and kept you comfortable and mobile, all good. Might be good to hear who you have seen in the past since you had your harrington placed. We do have members that are in Canada, a couple who are fairly active. I looked at the Scoliosis Research Society website under London, Ontario in their doc locator and found one doc who might be worth a go see.

LHSC, Hospital

(519) 685-8055 (519) 685-8055

And that is if you are still located there.

Rod removal is seldom a fix to our problems post Harrington Rod, unless it's broken and poking. Many have their harrington Rods removed during revision surgery( fusion to the sacrum), I had mine out, and have it in a bag at home.

You are coping well, but if you get to the point you aren't, or want answers to what you already feel, do try and get to a SRS doc locally, and maybe some of our Canadian friends will chime in with Names of doc's they have seen and liked. Good to know exactly whats going on with you.

Gather up and x-rays, tests. office visits, and surgical reports you can get. Good to have when seeing future doc's.

There is always the option of a trip to the states, office visits aren't that expensive, and might be worth knowing whats going on, if you can't find a doc at home.

Anyway, we look forward to hearing more from you.

Colorado Springs

[ ] for your information only

Hi, I have scoliosis and had the harrington rod procedure when I was 16 in London, Ontario in 1971 by Dr. C. Grainger. I don't know the degree of the curvature but I do know that when I saw my x-ray, I could not believe that a spine could be so crooked. It is in an "S" shape from side to side and literally, my spine was about as crooked as it could get. After the surgery, I had gained 2" in height. They used 2 rods (which I still have) and took a piece of bone out of my hip to fuse the rods in place. I have had 2 children and had an epidural each time, the first time was excellent because the intern actually cared enough to look at my x-ray for better placement of the needle (baby was breach and I needed something). The second time, the nurse was too lazy or whatever and kept jabbing me until she got it in. Since the surgery, I have found that if I gain too much weight or don't stretch properly before getting out of bed, my lower back muscles go

into spasm and the rest of the day is quite painful to get through. I have an excellent chiropractor that doesn't do your typical spinal adjustments on me, but he works on the muscles around the lower back to give me relief when I need it. Going to specialists and I use that title sarcastically because if they really are specialists, they would have more answers. The only answer that I got from a specialist that was of any use was not to extend my body backwards... duh?!! No kidding, I already knew that. Otherwise, whatever questions I have asked the answer was always "I don't know". So I try to pay attention to my body and listen when it talks to me. I take a daily vitamin, vitamin D & C and I also take calcium and MSM. Last year I purchased a mirror foam mattress and I absolutely love it. I still stretch my back in the morning, but I have noticeable improvement in my mobility. When I wake, I get into a fetal position and gently pull my knees up to

my chin until I feel the lower back muscles relax and stretch and then very slowly ease out of the position and roll out of bed. Over the years, I have had my legs give out on me, pain in the hip where they took the bone that I wasn't supposed to miss (ha), tingling and numbness in my left hand, incredible pain between my shoulders, ribs go out of place often, really stiff neck and shoulders and on and on... I don't regret the surgery because I would probably be in a wheelchair had I not had it. As I say with exercise, massage therapy and chiropractic treatment when necessary, I am doing pretty good for my age. I see other people my age with much worse aches and pains. What is to come, as the specialist says... I don't know, but I'm hoping I can handle it. I would like to know if anyone has had their rods removed after having them for 30 to 40 years and what the consequences were. I am ok right now but a few years ago, there was a lot of clicking around

the fusion and the dr's refused to remove the rods. X-rays showed that the fusion was solid. I worry about the future.Barbara

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December 30, 2009

Thanks for the response... yes, I'm still in Canada, specifically,

Chatham, Ontario. My issues were more serious about 5 to 10 years ago... lots

of pain. I wish I had better advice back then when the pain was severe and I

had those clicking noises in the area of the fusion between my shoulders. All I

know is that I have 2 rods in my back, fused at the top, bottom and I imagine in

the middle as well. I was 14 or 15 when the whole process started and I was

referred to London to see Dr. Grainger. I'm sure as soon as they heard that

surgery was necessary to correct the curvature, shock set in and that was it. I

know my head was spinning and what I remembered most was that I was almost too

old for them to do the surgery because they usually performed it on younger

people (10 or 11). I do remember Dr. G. saying that if I didn't have the

surgery that I would be in a wheelchair for the rest of my life after having

children.

The odd day I am hobbling from lower back pain, but as I said, the more I listen

to my body, the better things are. I believe exercise, stretching and vitamins

have been my saving grace so let's keep our fingers crossed that I keep feeling

good. My family dr's solution is to feed me pain pills. The last pills she

gave me caused me stomach pain so bad that I would rather put up with the back

pain than take the pills. Motrin seems to be my pain medication of choice and

it does work most times. She did refer me to the Spinal clinic in London

several years ago and they said there was nothing they could do for me. I asked

about removing the rods and they basically said that if they removed them, I

could be far worse off with pain and mobility and they wouldn't even consider

doing it. If you don't mind me asking, how old were you when you had the rod(s)

removed and how long were they in your body. I think that is a huge factor.

Meanwhile, I am glad that there is this forum and I will keep reading what

others have to say. I think we can all learn from one another

Regards,

Barbara

>

> Barbara,

>

> Welcome to the group, sorry you are having issues, but you seem to be coping

fairly well.

>

> Are you still in Canada? still in London, Ontario? What levels are fused on

you?

>

> I know getting to see a qualified doc is a struggle, especially in Canada. I'm

glad coping skills and Chiro has helped and kept you comfortable and mobile, all

good. Might be good to hear who you have seen in the past since you had your

harrington placed. We do have members that are in Canada, a couple who are

fairly active. I looked at the Scoliosis Research Society website under London,

Ontario in their doc locator and found one doc who might be worth a go see.

>

> LHSC, Hospital

> (519) 685-8055

>

> And that is if you are still located there.

>

> Rod removal is seldom a fix to our problems post Harrington Rod, unless it's

broken and poking. Many have their harrington Rods removed during revision

surgery( fusion to the sacrum), I had mine out, and have it in a bag at home.

>

> You are coping well, but if you get to the point you aren't, or want answers

to what you already feel, do try and get to a SRS doc locally, and maybe some of

our Canadian friends will chime in with Names of doc's they have seen and liked.

Good to know exactly whats going on with you.

>

> Gather up and x-rays, tests. office visits, and surgical reports you can get.

Good to have when seeing future doc's.

>

> There is always the option of a trip to the states, office visits aren't that

expensive, and might be worth knowing whats going on, if you can't find a doc at

home.

>

> Anyway, we look forward to hearing more from you.

>

> Colorado Springs

> [ ] for your information only

>

> Hi, I have scoliosis and had the harrington rod procedure when I was 16 in

London, Ontario in 1971 by Dr. C. Grainger. I don't know the degree of the

curvature but I do know that when I saw my x-ray, I could not believe that a

spine could be so crooked. It is in an " S " shape from side to side and

literally, my spine was about as crooked as it could get. After the surgery, I

had gained 2 " in height. They used 2 rods (which I still have) and took a piece

of bone out of my hip to fuse the rods in place. I have had 2 children and had

an epidural each time, the first time was excellent because the intern actually

cared enough to look at my x-ray for better placement of the needle (baby was

breach and I needed something). The second time, the nurse was too lazy or

whatever and kept jabbing me until she got it in. Since the surgery, I have

found that if I gain too much weight or don't stretch properly before getting

out of bed, my lower back muscles go into spasm and the rest of the day is quite

painful to get through. I have an excellent chiropractor that doesn't do your

typical spinal adjustments on me, but he works on the muscles around the lower

back to give me relief when I need it. Going to specialists and I use that title

sarcastically because if they really are specialists, they would have more

answers. The only answer that I got from a specialist that was of any use was

not to extend my body backwards... duh?!! No kidding, I already knew that.

Otherwise, whatever questions I have asked the answer was always " I don't know " .

So I try to pay attention to my body and listen when it talks to me. I take a

daily vitamin, vitamin D & C and I also take calcium and MSM. Last year I

purchased a mirror foam mattress and I absolutely love it. I still stretch my

back in the morning, but I have noticeable improvement in my mobility. When I

wake, I get into a fetal position and gently pull my knees up to my chin until I

feel the lower back muscles relax and stretch and then very slowly ease out of

the position and roll out of bed. Over the years, I have had my legs give out on

me, pain in the hip where they took the bone that I wasn't supposed to miss

(ha), tingling and numbness in my left hand, incredible pain between my

shoulders, ribs go out of place often, really stiff neck and shoulders and on

and on... I don't regret the surgery because I would probably be in a wheelchair

had I not had it. As I say with exercise, massage therapy and chiropractic

treatment when necessary, I am doing pretty good for my age. I see other people

my age with much worse aches and pains. What is to come, as the specialist

says... I don't know, but I'm hoping I can handle it. I would like to know if

anyone has had their rods removed after having them for 30 to 40 years and what

the consequences were. I am ok right now but a few years ago, there was a lot of

clicking around the fusion and the dr's refused to remove the rods. X-rays

showed that the fusion was solid. I worry about the future.

>

> Barbara

>

December 31, 2009

Hi Barbara,

I'm having revision surgery at the end of January. This will be exactly 30 years

after my scoli surgery with Harrington Rod. In my case, the rod itself is not a

problem (as it created the flatback way back then -- damage is already done).

However, in order for the Doc. to fix the flatback, she needs to remove, at

least, the part of the rod that is in the lumbar area. During surgery, if it is

easy to remove the entire rod, she will do so. But if not, then will clip away

the bottom part.

Hope that this helps.

SF Bay Area

> >

> > Barbara,

> >

> > Welcome to the group, sorry you are having issues, but you seem to be coping

fairly well.

> >

> > Are you still in Canada? still in London, Ontario? What levels are fused on

you?

> >

> > I know getting to see a qualified doc is a struggle, especially in Canada.

I'm glad coping skills and Chiro has helped and kept you comfortable and mobile,

all good. Might be good to hear who you have seen in the past since you had your

harrington placed. We do have members that are in Canada, a couple who are

fairly active. I looked at the Scoliosis Research Society website under London,

Ontario in their doc locator and found one doc who might be worth a go see.

> >

> > LHSC, Hospital

> > (519) 685-8055

> >

> > And that is if you are still located there.

> >

> > Rod removal is seldom a fix to our problems post Harrington Rod, unless it's

broken and poking. Many have their harrington Rods removed during revision

surgery( fusion to the sacrum), I had mine out, and have it in a bag at home.

> >

> > You are coping well, but if you get to the point you aren't, or want answers

to what you already feel, do try and get to a SRS doc locally, and maybe some of

our Canadian friends will chime in with Names of doc's they have seen and liked.

Good to know exactly whats going on with you.

> >

> > Gather up and x-rays, tests. office visits, and surgical reports you can

get. Good to have when seeing future doc's.

> >

> > There is always the option of a trip to the states, office visits aren't

that expensive, and might be worth knowing whats going on, if you can't find a

doc at home.

> >

> > Anyway, we look forward to hearing more from you.

> >

> > Colorado Springs

> > [ ] for your information only

> >

> > Hi, I have scoliosis and had the harrington rod procedure when I was 16 in