[Flatb ack_Revised] Re: for your information only

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It is nice to hear from Canadians. I am 1 1/2 hr n of Toronto in borough. I had surgery in Toronto in 1966 and have two rods and I was 16. Right now I am in Florida but please stay in touch

From: bmatthews242 <bmatthews242@ hotmail.com>Subject: [ ] Re: for your information only Received: Wednesday, December 30, 2009, 1:18 PM

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 anotherRegards,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 (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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Hi all,

Happy New Year!

Another Canadian here from Hamilton, Ontario. My scoliosis is congenital rather

than idiopathic. Dr Hall was my orthopaedic surgeon from 1965 until the time he

left Canada for Boston. Dr Gillespie (deceased) did my fusion in 1969

and Harrington rod surgery at Sick Kids in Toronto in 1971 when I was 10. If I

recall correctly, my original fusion was L5 to S1 and Harrington rod from T4 to

L5. I also had skull tong and femoral pin traction prior to my surgery.

Ideally, with the Harrington distraction rod instrumentation, it was thought

best to delay surgery until maximum growth potential was achieved. But my curve

was so severe that waiting 5 more years was not an option. As a result, my

growth was hindered substantially by having the rod inserted at such a young

age. My adult height is 4'7 " and my lowest ribs extend down inside my pelvis.

In retrospect, I realize now that I began experiencing symptoms of flatback in

the mid-1990s, upper back and neck pain with associated voice and breathing

problems. A fall in 1999 lead to the discovery that I have sacroiliac joint

dysfunction. I've been using a cane for balance and mobility ever since.

I was referred to Dr at Toronto Western for my current issues and

will see him again in February to discuss the results of an MRI scan of my neck

that was done a few weeks ago. He ordered the scan after my xray revealed what

looked like a bone spur (osteophyte) in my cervical spine. I'm not sure if

revision surgery will be in my future, but we shall see.

Barbara, thanks for the insight into your morning routine! I may start doing

some stretching before I get out of bed each morning to see if that helps

alleviate the pain and stiffness during the day. And I will look into purchasing

a mirror foam mattress, too!

I've just recently purchased an AeroPilates Performer with Rebounder so my New

Years resolution is to keep active while I'm at home!

Sheila

> >

> > 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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