KYPHOSCOLIOSIS

hileena111
hileena111 Member Posts: 7,099
edited 7. Oct 2010, 11:39 in Living with Arthritis archive
Hi and help please.....
Does anyone know if there is an organisation that deals with kyphoscoliosis or even back pains....It would be great if there was something like this {Arthritis Care} only for Scoliosis.
Any advice or help welcome
Thanks
Hileena

Comments

  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Hileena,

    try ringing or emailing the AC helplines people - they have info on other organisations that can offer support for specific conditions, and if they don't know they might know someone who would.

    WOnky
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi
    Thanks Wonky I'll try that tomorrow.....meeting a girl from our local Arthritis Care Brance tomorrow morning for coffee.....I see her once a month at meetings but we meet a couple of times in between meetings to have a natter....actually to collect avon order or deliver avon order to her but we are usually in Starbucks for about a couple of hours before we rfemember about Avon LOL So tomorrow afternoon I'll try.
    Just thought I would ask you knowledgable lot first :wink:

    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Have you googled it? Sometimes organisations come up, as well as all the medical stuff. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi DD
    Yep....one of the first things I did was google :lol: but so much came up and so much of it was USA or Canada....Just thought i would ask.

    Love
    Hileena
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hope you do get info on a support group Hileena. :wink::D

    good on you for being so determined to find out more about this condition.... phoning the helpline peeps to see if they know of local groups seems a good idea.

    iris xxxx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Hileena

    Google Scoliosis society and go to the first link, Scoliosis Association (UK). I joined over a year ago, as I have scoliosis of the spine. Unfortunately there is no forum like we have on here. :(

    I am sure that we have both discussed our scoliosis on here a long time ago. Do you remember?

    There is a helpline number which is 02089641166. As I joined I receive the twice yearly magazine called Back Bone which I find interesting reading. In the latest issue on the noticeboard page there was a note suggesting, it is good idea to make sure you are seen by a scoliosis specialist. They are few and far inbetween across the UK and a general orthopaedic surgeon is not really a satisfactory substitute. If you wish to find out if you are seeing the right person call the SAUK's helpline as they hold an uptodate list of all the scoliosis specialists in England, N Ireland, Scotland and Wales and the Republic of Ireland. If you prefer you can email info@sauk.org.uk

    By all means phone the helpline as they may have more information than I am able to give you. If so, please let me know too. :)

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • lululu
    lululu Member Posts: 486
    edited 30. Nov -1, 00:00
    I have just Googled the K word and got a whole list of stuff far too much to list. Hopw you find something useful
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Thanks ...Iris Elna and lulu, :lol:
    Yes I googled it as well and far to much to figure out what was right for me. Especially when they are American /Canadian sites.

    Elna....nope ...dont remember ever discussing this before last week. Thats when it was diagnosed....before that it was OA in lower back or a curved spine and it wasnt doing me any harm so I left it alone :wink:
    Thanks for the info...I'll check that out
    I can always search for the thread and see if anything comes up
    What a miserable day it is here....rain is hitting the ground and bouncing about 6 inches of it :cry:
    Love
    Hileena
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Hileena

    We discussed curved spine and mentioned that when we wore trousers, for example, one trouser leg was a little longer on one leg than the other. Probably no one else notices, it but I do. My leg lengths are the same it is because my spine is curved I am slightly lopsided :roll: Scoliosis (this word was only used last year by a back specialist) was mentioned when I had bad sciatica. He suggested a small op but I declined, had injections instead and the sciatica has not returned since December 09.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Elna
    Sorry forgot to mention.....It was an orthopaedic surgeon that did my hip but he does not take anything to do with backs and has referred me to "back specialist" his words. at a different hospital....Not sure what his exact title is yet...Kbnow his name but thats all....Presumably i'll find out when I eventually get an appointment
    Yes I forgot about the trousers :lol::lol: What a memory!!!
    A typical female thing isnt it.....noticing a slight difference in trouser leg lenghths

    Love
    Hileena
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    delboy wrote:
    Scoliosis-support.org may be what you're looking for.

    Thanks Delboy.....going out so will check that link when i come home

    Love
    Hileena
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    hileena111 wrote:
    Yes I forgot about the trousers :lol::lol: What a memory!!!
    A typical female thing isnt it.....noticing a slight difference in trouser leg lenghthsLove Hileena

    :lol::lol::lol: You are so right, Hileena :roll: :lol: Of course I remembered, :) it is reassuring to know there are a few other lopided peeps around :roll: :roll: :lol:

    Have a good day :)
    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi I have a slight 'bend in my spine, and thats what its called but mine is only very mild, I would'nt have known if the rhuemmy hadn't mentioned it, but when I asked he said mine is only very slight, thank goodness. I hope you find the information you're looking for.

    Love sue
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Hileena

    I can't add anything useful I'm afraid, but hope you do find a good support site. I'm sure there must be one out there in the UK wouldn't you think? Hope the link Del has suggested proves useful.

    Love Tilly xxx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi
    Or when my wonderful son said when he found out theTHR was delayed and that the back had to be treated first...."Well mam we always knew you were bent and twisted" Charming!!! LOL :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Love it! How's the info hunt going? Have you been able to contact the links that elna and del gave you? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Morning again
    I've got the link.....saved it and bit by bit am browsing through it....I've been out alot these past few days so havent managed to get through it all
    Elna did you automatically get the magazine or did you ask for it.

    Love
    Hileena
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    hileena111 wrote:
    Elna did you automatically get the magazine or did you ask for it. Love Hileena

    Hi Hileena,

    I joined to receive the magazine. On joining, I also received the name of the regional secretary to me and some people who I could telephone who also have scoliosis, in my area. I have not used either so far.

    I am pretty sure you are able to use the helpline without joining. There is one way of finding out!

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Thanks for the info Elna

    Love
    Hileena
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Elna
    If yur interested I've found another site if you want a look at it....Scoliosis support and it does have a forum.

    Love
    Hileena
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Hileena,

    Yes, Del put it on your thread. Thanks. I had a quick look at it. I noticed it had a lot of American and Canadian peeps on it. Did not look so easy to navitage as the AC forum. :)

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.