View Full Version : Hi everyone! I'm new to this forum
7th May 2006, 08:33 PM
I have just found this site and found it fascinating as I look at some of the photos and x-rays and feel like I'm looking in a mirror. It is a most peculiar - and welcome - experience after living for 40 years just thinking I was a sloucher and a hunchback. Somehow I got this far in life without any medical intervention and it is only now, thanks to the net, that I realise what I've got and also that, even at my age, there is still hope for exercise and possibly bracing or surgery to help it.
7th May 2006, 08:36 PM
Hi there LongTallSally, welcome to SSO! :welcome2: :D
I'm glad you've found us! Please tell us more about yourself, and we'll hopefully be able to help you work out how to get treatment if you need it. Where abouts in the world do you live?
7th May 2006, 09:04 PM
Hi and welcome :hammer: :hammer: (i realise now it is a hammer and not a little flag being waved)
With a bit of luck, considering you didn't know you had a problem for 40 years (what a blissfull state to be in) and you have managed all that time without any treatment, you might manage the next 40 without intervention as well. Or are you getting problems??
7th May 2006, 10:36 PM
Hi Sally and welcome!
My word, looking through that galllery must have been a strange feeling.
40 isn't too old for treatment, you just need to make sure that you find a surgeon who deals with adults. certainly contact your GP and ask for a referral to an orthopaedic surgeon who deals with scoliosis and have a full assessment done by them.
In the meantime, feel free to post, we're a very friendly and open group and look forward to hearing more from you.
7th May 2006, 10:40 PM
Hello :welcome: to the site
I'm mark and managed to make i to 35 without surgery. Although thats not through want of trying. Where all a little wonky and slightly mad so you should find the site interesting if not a little crazy from time to time. I hope you enjoy your stay and i look forward to reading your story.
9th May 2006, 09:05 PM
Thanks for your welcomes and for your encouragement. I certainly will seek professional advice about my back - mostly kyphosis rather than scoliosis - soon. I kind of just got busy growing up and living and it was only when the internet and Google came along in the last five years or so that I began my journey towards maybe getting something done about my back. I live in London and hope that that's a good place to get treatment if it decided anything can be done. I've certainly got a very nice GP, albeit a very busy one.
I haven't been in agony, but I see now that when I get pain in one of my hips and a really bad ache in the small of my back (whenever I'm standing still for any length of time), that this isn't just a case of general unfitness, but a direct result of having a bit of a lopsided pelvis and lordosis. I'm doing yoga now and, even though it's only been a couple of months, it's given me a great awareness of my problem and I've definitely started to sort out the lordosis. I can stand in a queue now without being in pain and having to lean against a wall. I still have a very kyphotic profile - my neck juts out forwards and harder to straighten out than my hump which definitely seems to be slightly responding to my self-administered programme of stretching exercises, over the counter orthotics and hours of me lying down with a yoga block or phone directory strategically placed under the epicentre of the hump.
Anyway, enough about me for now. Ciao
Thing is, I always thought treatment for a twisted spine was worse than the condition. Put it down to youthful squeamishness, less sophisticated surgical techniques and general fear and sense of helplessness. Also, when I was a teenager, and the perfect age to have surgery, the thought of having to co-operate with treatment which I thought would be invasive and scarey made me just say 'no thanks' every time my poor parents tried to discuss the subject.
10th May 2006, 11:03 AM
For what it's worth, I agree that a surgery in the 1980's would have been "primitive" compared to current techniques.Having it done now would yield better results and a very short hospital stay.
I guess if you're in London, Stanmore is the place to go.
10th May 2006, 05:04 PM
Hi there! :welcome2: Glad you've found us!
Looking forward to chatting to you lots! :wave:
10th May 2006, 08:32 PM
Hey :welcome2: Great to meet u.....hope u stick around and post a bit more!
11th May 2006, 08:13 PM
Welcome to SSO :niceone:
11th May 2006, 10:25 PM
Well I've just got back from my first visit to an osteopath. Turns out I've got kyphosis and lordosis. Osteopath wants me to go once or twice a week for the next year to learn exercises which will at least stop things getting worse. She advocates exercise - particularly Pilates - rather than surgery, in my case. She has got a room kitted out with Pilates equipment which she will work on with me and says we should aim to bring some flexibility to my frozen vertebrae.
Second appointment is on Saturday.
Off for a long soak!
12th May 2006, 08:25 AM
Hi Sally have you had a look in the Kyphosis Forum they may be some information in there that may be able to help you
Have you been to see a specialist orthopedic consultant who deals with Kyphosis? Where abouts in the world are you, if your in England then there are a couple of excellent spinal centres who would would be able to tell you the degree of curvature and advice you on the appropriate course of action.
Hope you find the exercises useful
12th May 2006, 06:55 PM
Hopefully the osteopath will be able to help with pain and discomfort. As long as it feels good, or the results feel good, then definitely worth doing as long as you can afford to do it. I would absolutely still recommend getting to see a proper scoliosis/kyphosis surgeon though, to have the curve(s) measured and monitored, so that you know where it all is in terms of what an orthopaedic surgeon would consider.
Meanwhile, :welcome2: :D
12th May 2006, 09:24 PM
Just been to a Pilates class in the local church hall. I thought it was very useful - and extremely affordable. The teacher believes that lots of targetted practice can really help and should be tried before going to see a surgeon. She seemed very sensible. I'm not under any illusions though and guess I will end up hacing to go to see a doctor to get more advice.
Off for another long soak.
PS I live in London.
2nd June 2006, 05:27 PM
Just to say hello, and that I have been pretty much in the same boat. I was diagnosed back in 1986, my parents were offered surgery for me but turned it down. I'm so glad they did as Sins says the chances of paralysis back then were far greater, and I know I would not have been disciplined enough to look after myself properly.
Anyhow, at 33 I have just had surgery, I really felt the time has gone, the aches and pains were becoming greater as well as the curve as well. I am 6 weeks post op and it is the best thing I ever did.
I am hoping to return to Pilates later this year, but will discuss with the teacher what i need to avoid now I have a rod in my back.
Good luck with your appointments.
2nd June 2006, 09:57 PM
Welcome to the site. I did not have the surgery and I am 55years old and have lousey lung capacity and large curves. I am on full time oxygen and wear a Bipap mask at night. I wish I had done something like 10 years ago but played ostrich and raised my child and pretended all was well. I depended on my general family doctor to give me good advice and didn't get it. Now I blame myself. Keep track of your medical records etc. Keep on the internet and do research. YOU are the most important person to your health! Welcome aboard,Jean
20th July 2006, 11:00 PM
I am 40 years old and have had scoliosis since birth. I had a Harrington rod fitted at the age of 11 at Stanmore. I also have ehlers danlos.
I have been having a lot of back pain in mylumbar spine and am having physiohterapy on the bottom part of my spine, the physiotherapist thinks it is caused by muscle pain where the rod ends, as no support there. I am going to to Oxford Nuffield Hospital on 10 August.
I was supposed to have a spinal injection at my local hospital but they didn't seem to know what to do or where to find the pain.
It'll be good to hear from anyone. My partner also has scoliosis.
20th July 2006, 11:14 PM
Hi there Graham,
Nice to see you back! I'm really sorry to hear that you're having so much pain. I had a Harrington rod put in when I was ten at Stanmore, and mine appears to be causing problems too :(
I'm glad you haven't got to wait too long until your appointment at the Nuffield Hospital. With any luck they'll be able to do the injection for you there - you really need to have it done by someone who knows what they are doing!
By the way, I think I know your partner, Lizzie? She uses an MSN group that doesn't see much activity so I've invited her here before. It'd be nice to see her if she fancies talking to more people :-)
21st July 2006, 08:49 AM
Hello Graham, its nice to see another bloke. Where an endangered species on this website :-D
Sorry to read your suffering from so much pain. I hope your appointment goes well
21st July 2006, 12:58 PM
Hi Graham and welcome back.
Good to hear you've sorted an appointment.You're not the first person who's had a local hospital where they've been unsure as to how to aproach your spinal injection.
Basically seeking expert medical opinions from somewhere like Nuffield is the best option, no point wasting time with hospitals who don't have the expertise to deal with fused spines or trying to cope in silence.
I'm 39, and have a fused spine since 1983.
Hopefully you can improve your pain levels and quality of life.
Feel free to join in any discussions or start a topic at will.
looking forward to hearing more from you.
21st July 2006, 07:35 PM
Hi Graham i read about you in the SAUK magazine.
i had my fusion in 1981 i no longer have Harrington Rod. I hope things go well for you.
23rd July 2006, 07:41 PM
I'm glad to hear that you've got an appointment coming up nice and soon. I'm one of those who had a local hospital that just didn't seem to be offering satisfactory treatment - they wanted to give me a general anaesthetic to do an epidural injection!
I got the injection done by the hospital where I'm seen for my scoliosis instead, and it was a quick, easy procedure that I'd be happy to repeat if it proves necessary.
When you do see your new surgeon, a couple of questions to make sure of asking would be where you're fused (for example, I'm fused T3-L4), and if it's down into your lumbar region, whether there is any chance that the rod may be causing some of your problems, as in some cases a Harrington rod going low down into the lumbar region may cause some people to develop problems in the longer term, so it would be worth knowing where you stand with that - by no means all people get the problems even if they have a very long rod of course, but best to ask.
Again, welcome back :-)
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