Re: Not One Answer?
As an admin here, I am so sorry we have failed you. We get a lot of posts here and although we try to do our best, it is difficult to reply to everyone. I'm terribly, terribly sorry that your posts dropped down the forum and got missed without any replies. As Maddy has said, we are a volunteer support site that grew out of a small group of friends several years ago, and the admins/staff themselves are nearly all people who are dealing with longterm severe health issues of their own. I myself have been having treatment for Stage 4 cancer for the past four years and am currently into my fifth chemo regime, so I get very tired and am often not as on-the-ball as I would like to be. I have no experience of what you had experienced and I live in the UK, so I was hoping that someone who could relate to your situation would chime in with practical support for you; unfortunately your post slipped by and I failed to reply, but i genuinely do feel sad for you for all that you have been through. all I can offer is moral support and sympathy that you are having such a horrible time. I did reply to an earlier thread of yours, when you first posted. About half of our membership is based in the UK and Ireland, with the rest coming from other countries around the world, so with differing healthcare systems it may well be that others have felt they can't offer practical advice either, and so don't post.
Again, I am so sorry. Please keep posting, you are very welcome here and we will do our best to help you as much as I am able. Thank you for speaking out and letting us know that we could do better.
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.