British Snoring & Sleep Apnoea Association

I have scoliosis, have been using nippy 1 ventilator for 15 years, I am 45. I was changed to a nippy 3+ in March this year, Papworth are now saying that I probably need oxygen, I am rather upset about this, I was fine with my other ventilator for all those years without any oxygen, the Dr who I had never seen before said that my back had got worse, no proof of this, I have been going about every 2 months recently, oxygen was not mentioned when I asked why my oxygen had gone down! I am really annoyed too, I go back in September, oxygen would be such a pain as I go away a lot and go out and about too, I don't want to be housebound, its bad enough using the nippy without having oxygen as well, the Dr said I would need to use it 15 hours a day! My blood gases were about 69, they sent me home without even trying me on oxygen, I did say I didn't want it. I thought they could have tried it on me though if I really needed it!

Welcome to the forum Pigsty, and I'm sorry to hear that things have got worse for you recently. Unfortunately you don't mention if you have been diagnosed with OSA on top of your scoliosis. Your condition seems too specialised for me to comment on and I don't understand enough about it to be helpful. You might consider posting it here - http://www.scoliosis.org/forum/index.php - and I hope that you will find the solution to your problem very soon. Kind regards.

Greetings Sir
I don't have scoliosis but a curved neck means i too have NIPPY (3+ in my case).
I also go to Papworth and have have my fights with them actually.
How did things go and how did it work out?
Maybe a little more info if you feel like sharing,

Kind regards

john (andavane)