Re: Re: for your information only

[Guest guest]

Hi Barbara,

My name is Karyn and i too am in Canada- toronto. Its always nice to see other Canadian's on here. So much reseach etc is always done in the states- often leaving us to feel like we are all alone. Welcome!

Karyn

From: bmatthews242 <bmatthews242@...>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>

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Barbara,

I looked on th SRS list using Chatham, and nothing came up. I'm not familiar with Canada, maybe you could let me know a major city close to you and I could do a further search.

Not knowing a lot of details about ones first surgery is pretty common, afterall we were kids and not in control. In my case, I was a foster child, and my foster Mom( they later adopted me) had to fight to find a funding source so I could have the surgery since Med-i-cal in California wouldn't pay, it wasn't considered a life threatening illness. The Crippled Children organization paid for it. I was supposed to have a uninstrumented fusion in Santa CA, but my doc met another doc at a conference who was doing the surgery with Harrington Rods and bracing, so I was off to see him, and eventually had surgery with him, my doc assisting, at UCSF. I saw that surgeon only for one preop visit, day of surgery, and 6 month check. Neither my Mom( she passed last year) or me could remember his name all these years later. As to levels fused I knew it ended at L3, beyond that, not so much. Nowadays after years of learning, 3 surgeries, and very informative surgeon in Dr. Kumar, and my years here, I really know how to talk the talk. So don't feel bad.

I had my Harrington placed in 1973, at age 14, at UCSF, San Francisco. I had it removed during a decompression/lami surgery in Dec 2000, after having it in 27 years, in Denver CO, with Dr. Anant Kumar and Dr. O'Brien. Since that point I have had two more surgeries, a fusion to the sacrum surgery in jan of 2002, and a total reworking of my entire spine( except for my neck) and fusion extension upward to T1 from T5, removal of my revision hardware, and new Stainless steel hardware placed in Dec of 2002. So all together I have had 4 spinal surgeries. I was 41 when I had my Harrington out. Since my last surgery I'm doing very well, and I'm very thankful.

The after affects and Flatback is fairly well known among the spinal surgeon community, but the SRS docs are usually your best hope of at least finding someone who GETS it. Most doc's that aren't up to the task will hum and haw around, tell you nothing can be done, and to live with it. I got told that by 20 some docs before I got to Dr. Kumar. One idiot even told me the pain was all in my head, my fusions were good, and I had nothing to complain about. In the ten years since my diagnosis and surgery, the amount of doc's that GET this has grown dramatically, even my PCP in Colorado Springs knew of it. You may not have gotten to the right doc, at the right time. Not your fault, theirs.

So for now you are able to control things with chiro, Motrin, exercise, thats all good. Surgery is always a last resort, but for some of us necessary to get us feeling better. For now you know what problems can arise, what to look for, and have time to scope out docs if you need them in the future. I hope for you, that you are able to control it, but if you can't with time, you now know tools to find a good specialist.

Hope that helps!

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>

[Guest guest]

Hi Barbara,

I’m another Canadian, who happens to

run the Scoliosis Association of British Columbia. There is another Chapter in Ontario, run by a friend

of mine, n. If you would like to contact me using the Association e-mail, scoliosisassn.bc@... , I can give

you her address and she might have some further information about Ontario doctors. I know

that there seems to be fewer to choice from in Canada, if you are able to be given

a choice, which will depend on your GP.

Llweyn

BC, Canada

From:

[mailto: ]

On Behalf Of Kirkaldie

Sent: December-30-09 2:57 PM

Subject: Re: [ ]

Re: for your information only

Barbara,

I looked on th SRS list using Chatham, and nothing came up. I'm not

familiar with Canada,

maybe you could let me know a major city close to you and I could do a further

search.

Not knowing a lot of details about ones first surgery is

pretty common, afterall we were kids and not in control. In my case, I was a

foster child, and my foster Mom( they later adopted me) had to fight to find a

funding source so I could have the surgery since Med-i-cal in California wouldn't pay, it wasn't

considered a life threatening illness. The Crippled Children organization paid

for it. I was supposed to have a uninstrumented fusion in Santa CA,

but my doc met another doc at a conference who was doing the surgery with

Harrington Rods and bracing, so I was off to see him, and eventually had

surgery with him, my doc assisting, at UCSF. I saw that surgeon only for one

preop visit, day of surgery, and 6 month check. Neither my Mom( she passed last

year) or me could remember his name all these years later. As to levels fused I

knew it ended at L3, beyond that, not so much. Nowadays after years of

learning, 3 surgeries, and very informative surgeon in Dr. Kumar, and my years

here, I really know how to talk the talk. So don't feel bad.

I had my Harrington placed in 1973, at age 14, at UCSF, San Francisco. I had it

removed during a decompression/lami surgery in Dec 2000, after having it

in 27 years, in Denver

CO, with Dr. Anant Kumar and

Dr. O'Brien. Since that point I have had two more surgeries, a fusion

to the sacrum surgery in jan of 2002, and a total reworking of my entire spine(

except for my neck) and fusion extension upward to T1 from T5, removal of

my revision hardware, and new Stainless steel hardware placed in Dec of

2002. So all together I have had 4 spinal surgeries. I was 41 when I had my

Harrington out. Since my last surgery I'm doing very well, and I'm very

thankful.

The after affects and Flatback is fairly well known among

the spinal surgeon community, but the SRS docs are usually your best hope of at

least finding someone who GETS it. Most doc's that aren't up to the task will

hum and haw around, tell you nothing can be done, and to live with it. I got

told that by 20 some docs before I got to Dr. Kumar. One idiot even told me the

pain was all in my head, my fusions were good, and I had nothing to complain

about. In the ten years since my diagnosis and surgery, the amount of doc's

that GET this has grown dramatically, even my PCP in Colorado Springs knew of it. You may not have

gotten to the right doc, at the right time. Not your fault, theirs.

So for now you are able to control things with chiro,

Motrin, exercise, thats all good. Surgery is always a last resort, but for some

of us necessary to get us feeling better. For now you know what problems can arise,

what to look for, and have time to scope out docs if you need them in the

future. I hope for you, that you are able to control it, but if you can't with

time, you now know tools to find a good specialist.

Hope that helps!

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

>

[Guest guest]

Thanks so much for the info - Much appreciated

From: <linda.racine@...>Subject: [ ] Re: for your information only Received: Wednesday, December 30, 2009, 8:42 PM

Karyn... , who practices in Toronto, trained with Dr. Bridwell, who you may know by now, is very well respected in terms of revision surgery.http://www.tgwhf. ca/mha/surgeons_ lewis.aspRegards,> >> > 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> > > > > ____________ _________ _________ _________ _________ _________ _> Ask a question on any topic and get answers from real people. Go to Answers and share what you know at http://ca.answers.

>

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Val,

In Mina's writting " FlatbackSyndrome.doc" in the Files section, she is refering to Osteotomy included operations. In her words" formerly known as "Salvage surgeries" and more recently as" Scoliosis Revision Surgeries"". She is telling patients to choose wisely their doctor since osteotomies and this surgery should only be done by a very skilled surgeon.

Colorado Springs

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> > > > __________________________________________________________> Ask a question on any topic and get answers from real people. Go to Answers and share what you know at http://ca.answers.>

[Guest guest]

Salvage surgery is the same as revision surgery. Every othro i have seen has called it salvage surgery- when i question Dr McBroom as to why they call it that-his explanation was simple- they go in and try to "salvage" the spine through the mess of the first surgery.

Flatback Syndrome is as a direct result from the Harrington Rod/Spinal Fusion. I actually prefer the term salvage surgery over revision. I feel they really are salvaging whats left of our spine.

Karyn

From: redmarmie <vclark@...>Subject: [ ] Re: for your information only Received: Thursday, December 31, 2009, 5:45 AM

Karyn,What do you mean by salvage surgery? I am unfamiliar with the term. C> > > 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> > > > ____________ _________ _________ _________ _________ _________ _> Ask a question on any topic and get answers from real people. Go to Answers and share what you know at http://ca.answers. >

The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Get it Now for Free!