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maryluno
23rd March 2007, 09:14 PM
My name is Mary - from Toronto
i underwent surgery to correct scoliosis in 1973 as a teenager at Toronto's Hospital for Sick Children - 56% S curvature .
I'm in my mid 40's now still living in Toronto and experiencing dreadful pain & numbness in my lower back and legs. Because of my past history and the Harrington rods still embbeded in my back its been difficult to find any treatment or relief from the pain. Massage doesn't work.
Does anyone know of practitioners in the Toronto area that can help me deal with my problems ?
Is anyone else out there experiencing or has anyone experienced these types of symptoms and problems years after their surgery treatment?
Any ideas or suggestions?
Mary

GillyG
23rd March 2007, 09:24 PM
Hiya :wave:

Harrington rods have been superceded now by segmental instrumentation as they can sometimes cause problems in later years, particularly those placed in the lumbar spine.
It would probably be a good idea to see an orthopaedic spinal specialist and get some up-to-date x-rays done. It may be that your original rod can be replaced with the newer kind.

Hope to hear more from you.

Gilly xx

tonibunny
23rd March 2007, 09:27 PM
Hi Mary, welcome to SSO! :welcome2:

With the level of pain you describe, you certainly need to see a specialist who is experienced in adult scoliosis problems. Do you know which vertebrae you have fused? It sounds as though something is irritating the nerves in your lower back; this could be caused by disc degeneration at the bottom of the fusion (the discs bulge and press on nerves) or even by the rod itself.

You are by no means alone in the problems you describe - although there are many people who have never had problems with them, the old Harrington Rods have proved to become quite problematic in some cases, especially where the fusion extends very low into the lumbar spine. Titch, who runs this site, has more experience in this area than I do, and I know she'll be along soon to give you advice herself.

Meanwhile, I'll find out the names of some good specialists in Toronto.

Again, welcome! :-)

Toni xx

maryluno
23rd March 2007, 09:31 PM
thank u both for responding so quickly - i'll be checking the site regularly for any helpful info that yu may have and to helpothers anyway i can
ttyl :niceone:

Amazed Jean
23rd March 2007, 09:55 PM
Welcome to SSO. Sorry about your pain. I think you really need to see a scoliosis specialist. Every case is unique but there are bound to be others here that can help more than I can. My now semi-famous mantra here is to -Keep a notebook of questions etc. Write down when it really hurts and where. Take the notebook with to see the specialist - its easier to remember if you can write stuff down. Also I think everyone should get copies or photos of your xrays and any tests they run. Keep us up to date too. Everyone here is very caring.I

titch
23rd March 2007, 11:51 PM
Hiya,

I agree with others above that you really need to find an adult scoliosis specialist to get a review of your spine. You can find a list of Scoliosis Research Society members here: http://www.srs.org/locator/locator.asp

I'm not familiar with the names of many Canadian specialists that deal with adult scoliosis, however that should provide you a place to start. There are also a few Canadian members on the Yahoo group Flatback_Revised - a very helpful and supportive group that is specific to the kinds of long term problems some people have experienced following Harrington rods placed into the lumbar spine - who can tell you what doctors they have been seeing :-)

Broadly speaking, it sounds like you've got nerve problems going on as toni has said, which can be from disc degeneration or bony narrowing of the spinal canal called stenosis. The good news is that this can often be treated by injection, called epidural steroid injection - which uses localised steroids to soothe the nerves and reduce symptoms. I've developed stenosis myself, which causes nerve issues in my legs, and had an ESI last May. While it wasn't a miracle cure, it certainly helped things and a lot of the neurological symptoms (such as crawling muscles in my thigh) have been gone for months as a result.

It could well also be worth trying to get a referral to a pain clinic - something I have come to realise is that often I don't think I'm in pain as such, just that it's discomfort so I battle on through it, but actually it is a form of pain - sometimes it doesn't exactly hurt precisely because the nerves are not working right, but a painkiller often helps things to settle. Even if it is not a cure or long term solution, some relief is still a marvellous thing!

I'm sorry for the circumstances that have brought you here, but nevertheless :welcome2: I hope we can help and support you :-)

maryluno
24th March 2007, 03:47 AM
thank you for your help, i will try to find the right doctor for my problem i hope there is no when else experiencing the same pain i am, i think the numbness is worse than the pain because i can't walk, i used to work out alot and spent alot of time walking everywhere i can, now thathas stopped, if there is anyone who wants to share their story with me stay in touch

sins
24th March 2007, 12:27 PM
Hi mary,
If I recall Dr Marcel Dvorak would be the most experienced adult scoliosis specialist in Canada.I know we have his contact details around somewhere.I think he did the first flatback revision in canada if my memory is still intact!!!
Sins

titch
24th March 2007, 07:52 PM
I'm thinking he was the surgeon who did revision for a woman named Carol on the old Salvaged Sisters Delphiforum? She was a nurse as I recall - the trouble is these days unless you're a paid up Delphiforums member things like the search facilities are limited, so trying to go back 3 or 4 years is very difficult.

He was also Jenn's surgeon wasn't he? Can't for the life of me remember where he's based though.

tonibunny
24th March 2007, 08:02 PM
I can get hold of Jenn and ask her, as I'm still in touch with her :-)

sins
25th March 2007, 01:48 PM
Dvorak was in Vancouver general hospital if that's any help.
Sins