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piglet66
20th February 2007, 12:39 AM
I have had scoliosis since birth. I had a harrington rod fitted at the age of 10 years, I had to have this removed 9 years ago as it became infected.

I have had several sesssions of physiotheraphy since having the rod removed, I went for a couple of sessions recently, and the physiotheraphy said I should see a specialist as he thinks my back is progressing.

I use a nippy ventilator at night for breathing due to my scoliosis. Last time I went for a check up the specialist said he could not do any more. I do feel I should see a specialist to keep an eye on me.

What sort of treatment is available for me, the pain starts on the rib hump and travels up to my head, have had the pain on and off for a few weeks now. Painikillers don't seem to work, I take co-codimal during the day and tyrol at night prescribed by the Dr.

I look forward to any replies.

Many thanks

crkcallie
20th February 2007, 03:20 AM
This pain sounds like it's neck related. I will get headaches on occasion from my neck and everything else being out of alignment. I have to do yoga stretching for the rest of my life in order to correct my spine, because I have a lung disease that prohibits me from getting the surgery done. I would ask the doctor what else can be done, if anything. I recommend yoga for the back pain. :D

Amazed Jean
20th February 2007, 06:38 AM
piglet, Welcoome to SSO. I haven't had any surgeries or braces (Not recommended) however I fight the headache and neck pain constantly. Since going on 2 litres of Oxygen full time I feel much better. Then I started on a Bipap machine at night (in addition to 02) and my headaches are almost completely gone! My neck is a killer because my upper curve is so dramatic that I no longer have a neck. I really try to not stress it. If I get a twinge in my neck, I stop whatever I'm doing and try to relax. Different pain killers and muscle relaxants work sometimes. Sometimes a hot shower helps but nothing works every time. My favorite "cure" currently involves a neck massage, Margarita, and a nap with Bipap and O2 on of course. Good luck and welcome again!

titch
20th February 2007, 09:16 AM
Hello again! I'm sorry it's something like this that's brought you back, but even so welcome back :-)

Unfortunately, curves can sometimes progress after a rod has been removed, but there can also be plenty of other reasons for increased pain. I'd really suggest that you should ask your GP for referral to a pain clinic - a good clinic will have many different suggestions to make and will offer more than just painkillers, but also will be well positioned to give good ideas on what is best to take and in what combination. Some clinics offer alternative therapies as well, such as acupuncture, so I'd think it's worth a try.

Massage is something I find very effective for muscular pain, so could be worth considering if you can find a way to get it done too :-)

Could I ask roughly where you live? I'm guessing UK as you mentioned your GP in your previous message. If so, some places with well renowned specialists are the Royal National Orthopaedic Hospital at Stanmore in London, the Nuffield Orthopaedic Centre in Oxford and Queens Medical Centre in Nottingham. All of them take on some extremely complex cases, so would hopefully be able to help you, or alternatively if your specialist is based at one of these hospitals, perhaps you could see someone at another for a second opinion.

I do think that you should get a check up in any case, and be monitored periodically, especially as sometimes it's more a case of meaning that the risk outweighs the benefits rather than nothing can be done - and that's something that can change if you develop new pain, or have progression, so that the risk becomes worthwhile again. I hope that doesn't sound too grim, as it's really not how I mean it! Just that things can change, and medicine advances all the time - heck, sometimes something as simple as having new monitoring equipment available, so that the anaesthetist can do their job more effectively could be enough to make all the difference between a surgery being safe or not, so I'm sure you're right to pursue getting checked out again, and at least you'll know where you stand then, regardless of the outcome.

GillyG
20th February 2007, 05:22 PM
Hi there,

I would definitely second Titch's advice about getting your GP to refer you back to a scoliosis specialist. If nothing else they could take some up-to-date x-rays to check if there really has been any progression, although I must admit I find this concept rather worrying since I thought once the spine had fully fused it would be stable. :???:
Unless perhaps a curve has begun to develop above or below the fusion, do you know what levels were covered by the original Harrington rod surgery? Also - just being curious here - how did the rod become infected after such a long time?

Hope you can get your problem seen to soon.

Gilly x

sins
20th February 2007, 06:26 PM
I have little else to add, but definitely get referred to a specialist, not just any local orthopaedic surgeon but a specialist in one of the major centres who may have the know-how and experience to deal with complicated cases.
It's possible it may be somethiong as predictable as disc degeneration.I'm 39 with a rodless fusion and have battled the effects of cervical disc degenaration for some years now.
Even if no plans are made for more surgery,keeping a check on progression is important for the long term.
Welcome back to sso.
Sins