Scoliosis Support Group

Somewhat sounds like me.. how old are you ?
Has your doctor suggested surgery yet ?

I would talk to your doc beacuse it sounds like something should be done.

I'm 17. I have gone to my doc and was referred to specialist 3 years ago (supposed to get treated 16 weeks after being diagnosed, yeah right!). When I was referred my degree was 31 and they said Id have to have a brace but they left it too long. Been on surgery list for two years and still counting. Lack of specialists means appointment times are short so if you ask a question they just say not to worry so they save time in not answering...I just want to know if its bad or not, I have nothing to compare it too.

Thanks for your replies.

If you use to have 31 degree and now have a 73.. then its getting worse and i would ay thats pretty bad. It seems to me that you should find a different specialist seeing how there not treating you. Try looking up different hospitals with different specialists. It maybe too late for a brace and you probably need surgery.. but then again im not a doctor. I'm just remembering when i had a brace it did nothing for me and my curve degree just kept getting worse. I had to get rods put in my back and i would think thats the best thing to do.

It sounds like you have kyphoscoliosis, which is a restrictive respiratory disease. Basically since your spine is making you curve in on yourself your chest can't expand enough to allow you to breath properly. This is definitely something that should probably be corrected with surgery, otherwise as it gets worse the less you'll be able to breathe.

Thank you.
Finally got a letter today saying my next appointment is on the 17th october, hopefully get my last scan results then. If theyre still no closer to treating me then I will try to look for a new specialist but theres not many over here. Knowing them they will say its been too long since my last scan so may send me for yet another one. Yay.

What youve said about kyphoscoliosis makes sense. I will look into it and mention it at the next appointment. Thank you. I think surgery is my only option now, hopefully I can get it sooner rather then later so I can start uni.
Once again, thanks for your replies, will let you know how the 17th goes.

What area of the country are you in? If your insurance covers it, could you travel to another city/state to get a better specialist? Sounds like you need help soon and need to stop wasting time with your current doc.

Don't know if you can afford it or not, but I would definately get some action on this. You have severe kyphoscoliosis and at 90 degrees it cuts off your breathing completely. I had a doctor tell me that years ago. In my area there is the Cleveland Clinic in Cleveland Ohio and the Akron Children's Hospital in Akron, Ohio. They are both great. If nothing else, maybe u could call them and ask them to refer u to someone in your country.

I'm in West Midlands (England). The specialist I'm seeing is already in a different city from me, dont really want to travel much further as the car trip hurts as it is.
90 DEGREES?! One word comes to mind! Really hope it aint got much worse since my last results.
The hospital phoned today asking if I could come in for bending xrays (ouchie) but its too far so wouldnt have got there in time, they said I could go in tomorow instead so up early. At least they can, hopefully, give me the results to those too on saturday.

Thank you so much for your replies, understand how serious it is now

Will keep you posted

Hi DeanneLee,

Kyphoscoliosis is a combination of kyphosis and scoliosis, rather than being a respiratory condition. It's not definite that you have this (unless your consultant had told you that you do?).

However, Kyphosis, Kyphoscoliosis and Scoliosis can all impair respiratory function if the curves get large enough. A 90 degree scoliosis, kyphoscoliosis or kyphosis will NOT cut your breathing off though! I know several people with curves of over 100 degrees who manage well. One is a lady who has a 150 degree curve, she used oxygen because she gets short of breath, but it is not a death sentence. I knew another (younger) lady who had a 150 degree curve and had surgery for this; she now breathes better than ever and does not need oxygen.

I'd recommend that you visit the UK-based scoliosis-support.org forum where there are some very knowledgeable folks who can advise you on how to tackle getting seen by a consultant.

Good luck!