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View Full Version : looking for advice in uk "inc photos of my sc & p.e."



kze357
03-24-2005, 04:27 PM
I have had visible scoliosis since I was about 8 years of age, at the start I had no idea what it was and my family did not seem to bother due to the fact I was not I’ll. Once I had started my teens I then began to get more self aware plus the teasing had started at school and also my chest had started to form a dent (I also have “Pectus Excavatum”.) This brought an end to my swimming/sports and to the enjoyment of summer, I also got so badly teased at school that I decided to hide myself away from my parents and say nothing. I have just turned 30 years of age and not one single hour goes by without me thinking about it and it is now causing me pain in my right shoulder blade. I never knew this was so common until the other day, and now I think I can see a light at the end of the tunnel and I’m not alone in the world.
If anyone has any advice at all on what I should do then please get in contact.
I have also in-closed a couple of photos, all replies and advice will be very welcome.

traci
03-24-2005, 04:44 PM
Im 36 yrs old and have scoliosis. When I viewed your pics of your back it was like looking at my own back. I have an appt for the a scoliosis specialist on Apr 1. Im so excited. Im hoping they offer me some relief in the form of a brace. I know they do them for children, I hope they also have them for adults. Like you I experience the pain in the right part of back. Good luck in finding your answers. Please let me know how you are doing.
Regards
Traci :)

LindaRacine
03-24-2005, 05:06 PM
Traci...

While you'll fine some internet sites that make great claims, bracing will absolutely not work for an adult. While you're in the brace, your curves will temporarily be reduced, but when the brace is removed, the curves will return to their original degrees (or worse). Bracing can help in terms of reducing pain in some, but it's usually not a good option for adults (except for the elderly) because reliance on the brace can cause your muscles to atrophy, which could actually result in an increase in curvature and/or pain.

--Linda

Teleah
08-09-2005, 09:20 AM
oh my that was like looking in the mirror!!!! seriously im excactly the same as you but im 15 nearlly 16 on friday :(

Alison
08-09-2005, 11:32 AM
My very strong belief is that it comes a lot down to attitude, and developing a sense of strength within yourself. And that if you do not let it beat you, then you will control it, not let it control you.

You might ask, why can I say this, and that's not true, how can she say this,when she's had surgery....she doesn't know what it's like.

Unfortunately I do, looking at those pictures is like looking at myself in the mirror. Despite fusion, rods and all, I still have two curves which are roughly 65 degrees at the top thoracic and just under 60 degrees for the lower thoracic. They were only able to do a holding fusion due to the stiffness, and lack of movement in the curve. So all the rods do are 'hold the curve' . Which means I now still have a prominent rib hump, rib protusion on the front, rotation of the spine, a very painful shoulder blade on the rib hump side and 'creases' of skin on one side of the spine.

I was clinically depressed for a long time (partially caused by the scoliosis, the hospital politics I learnt and the fact it was a holding fusion); and it took me a long time to learnt to accept my body, accept my appearance, and that this was me.

I also have an absolutely magic physiotherapist (physical therapist) as well as a deep tissue massage therapist. They are the men who control the soreness and stiffness in my back, and who after my fusion, rebuilt me.

To the person who started this thread, I think the first thing you need to do is to get x-rays; no matter how hard it is to show someone. Once x-rays have been done, you'll have a greater awareness of what you're 'dealing with'. Your next step would be to be referred to a Orthapaedic surgeon who has expeience in Adult Scoliosis. Whom you could then go over your options with you. The road/decison for surgery (if that's the recommended option) is much about how it affects the person psychologically as well as what is physically there (the curves etc). The psychological effect is almost more important.

I'd also suggest find a physiotherapist whom you are comfortable with to work on the muscles supporting your spine as well as the pain you have.

Life is for living, there's so much to experience out there

Alison