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View Full Version : Congenital Kyphoscoliosis - Anyone Else Have Experience?



javaboy
05-15-2005, 10:32 PM
Hi all,
complete newbie to the forum - pleasure to have found you all!
In short...
28yo guy from Perth, Australia w/ congenital kyphoscoliosis that wasn't fully diagnosed until a couple of years ago. Anterior fusion T9-T11 with a 43 degree kyphosis and around 20 degree scoliosis.
I've basically had a decade of chronic neck pain (transferred up the spine) and migraines, and have spent the last year heading down the track of remedial physiotherapy.
I have had pretty much zero upper body strength, so they've had me doing strengthening on my shoulders and back in an attempt to get things to hold up and hoping that my discs don't give out 20yrs or so down the track.
Things are going relatively OK, but I'm interested to know of anyone else who's had a similar experience.
Anyone know how well strengthening works in the long term?
And how long it takes for things to start working? ;)

Thanks all,
Martin

Mary Lou
05-16-2005, 05:28 AM
Hi Martin.

When was your surgery? Were you in a lot of pain before surgery? The reason I ask is that here in the US, your numbers are really low for surgery! My 13 y.o. daughter had surgery for her Kyphoscoliosis five months ago and her Kyphosis was about 72* before surgery and her Scoliosis was about 46* before surgery. She was fused from T3-L2.

Mary Lou

javaboy
05-16-2005, 07:58 PM
Hi Mary Lou!
Yeah, you're right, my numbers are too low for surgery, so I've never had it.
Believe it or not, my curve wasn't formally detected until I was almost 27, by which stage it was pretty late to be considering surgery for a relatively small curve. So they decided it looked stable enough and left it, opting to send me off to physio instead. Pilates ahoy. :D

I'm pretty much left with a body acting similar to someone who's gone through a successful surgery, from what I understand of it.
My main problem has been that as I've grown, my back muscles have ended up being unable to compensate for the curve - they've simply been too weak and stretched too much. That's left me with some fantastic migraines and neck pain, which I'm still trying to shake.
I believe surgery is an option down the track if things get really bad (particularly if the disks either side of the fusion blow out, which I've been told to expect in my fifties if I sit back and do nothing), but the thought really doesn't entice me if there are other options.

You'll have to tell me how your daughter goes and what her curve manages to reduce to! As much as I haven't hit a point where I need surgery, like I imagine most people on here (or their children) have, it's nice to at least be able to talk to people who go through the same things on a daily basis. I guess I'm just lucky to not have it as pronounced as some.

Thanks!
Martin

monkeyboymark
06-17-2005, 11:46 AM
Hi, Javaboy, i'm 35, and I have just been diagnost with congenital kyphosis, ( I think thats the term ;) ), All my life I have suffered crippling back pain, and all my doctor sed was, take some asprin, and stay off your feet for a couple of days, well I was off my feet for about 4weeks :mad: ,. I am currently going thrue all the rigmarol of testing etc to see how bad it is, but what I realy need is pain control, i'm currently getting a tense machine in the hope of controling the pain, I, like you, allso get the most vile form of head pain, well, i'm sure you all can imagine how bad it gets.

I'm just not sure were to go from here, I am unable to work becose the spinal pain, it just becomes horendus, no 1 should feel such agony for so long, and not have a single doctor have you checked out, its only becose of nerve damage, that I had to see a pain specialist, and he, 4 days ago, has told me what it is, and why I suffer so much, by what I can tell, some have mild pain, others can be crippled with it. I'll keep you all posted on what happens next, and I hope you all can find some sort of peace, god knows, we deserve it :) :)

Barbs
06-17-2005, 12:45 PM
Hi las

Never had any pain at all up til 2 n a half years ago but have 'mild rotational scoliosis' in lumbar region. They wanted to put a rod in my back when I was 15 and I legged it (still could then). Have been talking to a lady in the UK scoliosis association who has pain same as mine. Mines the other end to yours ie.lower back and hip. But she says with the pain you can get injections into the joints but make sure you see a scoliosis expert. I would think that exercises should be prescribed under the guidance of a scoliosis expert also. I am trying to get hold of a yoga video, dvd called 'yoga for scoliosis' by Elsie Browning Miller but am finding it difficult to get hold of in UK but she has scoliosis and has adapted the exercises to help and I have read lots of people are getting great benefit from it. Also pilates can help but you need to make sure you get hold of a really good practioner who will look at your body individually.

Good luck

monkeyboymark
06-20-2005, 08:16 PM
I have just picked up the tens machine today, and its, erm, intresting, I thing its takeing the edge of the pain, i'm now just waiting to see a some thereapist regarding changes that I have been told that I must make to my life, hmmm not sure I like that sound of that. :eek: , but at least finally the problem is getting sorted out, :D :D :D

javaboy
06-21-2005, 02:34 AM
Hi Mark,
thanks for sharing your story - it's a relief to know that I am not the only person on the planet with such a fruitcake of a spine, one that is not even classically scoliotic! :)
I'd have to say that your case sounds a fair bit worse than mine - I am probably lucky in that it has been detected a fair few years earlier. But I can definately sympathise with many of the things you describe.
The nasty, nasty head and neck pain - oh, the days I have lost, curled up and holding my head and/or neck! And the nerve problems as well... while I don't think mine have quite curled up and died just yet, they definately give me all sorts of trouble. Especially migraine symptoms, like the nausea, the throbbing head pain, the 'not quite on the planet'/'brain fog' feeling where you're just two steps behind everyone for the day, the sensitivity to light... boy, I could go on... :D
I still manage to work, but I do lose days to the pain and the nervous defects. I guess I am fortunate to only have it intermittently, and still have the odd good day in between.
I can also sympathise with 'just being told to take an aspirin'... the first hint of everything was the headaches, which were first blamed as sinus headaches, and then migraines, so I was told to take tablets with pseudoephedrine in them, and later on migraine meds that put me to sleep for 24hrs at a time. It took an x-ray many years later to connect the dots.

The TENS machine sounds fantastic... my wife's grandpa has one due to a degenerative spine, so I know all sorts about them. I imagine it must be helping you an absolute heap!

A couple of questions...
- Do you know the degrees of your curvature? I found them handy to know in the end, even if it was just a figure. Helps to know what you're dealing with, I think.
- Do you have an absolute lack of upper body strength? As a teenager I can remember straight-out baulking at certain situations because deep-down I knew that I just couldn't lift a feather above my shoulders. I imagine it has probably come due to the non-diagnosis, and I've found physical therapy wonderful for this.

And an update for generally everyone while I'm here:
As I keep my physical therapy up for longer, the better I am getting. I've just had three consecutive virtually pain-free days for the first time since just about ever. I think I can get used to it! :D
Now up to a morning routine of 20 pelvic floor stretches, 20 shoulder rolls in each direction and 35 girly push-ups (push-ups on your knees, as recommended normally to pregnant women). Finding it wonderful - I actually have shoulder muscles all of a sudden! :D

Thanks!
Martin