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LEELEE85
06-30-2006, 01:19 AM
Hi,

I have congenital scoliosis but wasn't diagnosed until i was 14 1/2 yrs old the reason being i never had any pain and i also never had x-rays done before.

But sister actually picked it up when she was going down my spine and felt it wasn't straight also because in my thoracic- chest part is my worst curve which was around 50 degrees when i was 15 yrs old, i have some verterbras on top of each other if that makes sense. Also in my letter from him he said some verterbras were made up of multiple bits and pieces. You can't feel the spaces between the verterbras its like there's around 5 joint together has anyone heard of that before?

My specialist said that i was fully grown so my spine wouldn't progress anymore. I also have a second curve in the lumbar part which is 40 - 50 degrees. If they were gonig to operate he said they would only fuse my top curve some how does this sound normal?

Sorry for such a long post but i really want more info on people who know stuff on congenital or scoliosis it self.

Thanks

javaboy
06-30-2006, 01:57 AM
Yup, that's pretty much what I have too. I've only got three joined together, and they're in the middle of my back, so in a different place to you, by the sounds. But they're certainly fused together. It wasn't found until I was 27!
I'm fairly sure that my angle is 42-43 degs, which is just under the borderline for surgery. If yours is above 45, they might still suggest surgery anyway, but they'd probably give you the choice.

Your main problem as you get older (like me!) is going to be that your muscles will be unbalanced. They're not built to curve in the same way your spine does, so they react by tightening and swelling, and sometimes trapping nerves. I've had to do a heap of physical therapy and swimming, and only now am I starting to lose some of the pain, two years on. My tip would be to get your back strong and keep it strong - stay fit! :D

LEELEE85
06-30-2006, 04:20 AM
Well im 21 yrs old now and i don't get sore backs at all if i do its because im sitting with a bad posture or im standing for too long.

It was 50 degrees 6 yrs ago and he didn't want to do surgery back then cos he said i'd stopped growing and told me too come back in three years. Which i never went back cos i don't feel pain. But im going to see him at the end of july so i can just get a check up then i won't have to worry every day thinking if its progressed or not even though he said it wouldn't progress.

Do you get regular check ups? Javaboy?

Carmell
06-30-2006, 12:31 PM
Hi LeeLee,

My Braydon (11yrs old) has congenital scoliosis. With congenital malformations, they (a good scoliosis doc) would want to keep an eye on you to make sure the vertebrae that are malformed do not cause problems (ie, scoliosis, kyphosis, etc).

Having congenital malformations also means you are at a higher risk of having malformations of the kidneys and possibly heart (if mild, no treatment is necessary). You also have a higher risk of having a spinal cord anomaly (again, if mild, no treatment necessary).

My point is that you are now 21yrs old. If you have good insurance and need peace of mind, find a scoliosis specialist (preferrably one who has extensive experience with congenital malformations) and have a full evaluation/examination. You may be helping yourself down the road by making sure everything is in working order today.

Braydon's spine issues are his biggest medical hurdle. My worst fear is that I (the parent) will not be able to give him the best medical care now, and that he'll have chronic problems (including pain) as an adult. Not my idea of fun. My experience is skewed because of severe congenital malformations. If I were your parent and had these experiences, I would be making sure you are doing as fine on the inside as you are on the outside.

Good luck!

LEELEE85
06-30-2006, 10:53 PM
Hi Carmell,

I've had the MRI's and i have two kidneys everything is in order regarding the inside of my body. I got that done 5 yrs ago. Will i need to get another MRI when i go to my specialist in july?

Also how do yow know if you have kyphosis and what is it?

Thanks :)

javaboy
07-03-2006, 01:25 AM
Hi LeeLee,
Man, that sounds dead on like me... I too get pain when sitting in the wrong position for too long, or when standing too long. Even now, after 1.5 years of physical therapy, I went shopping with my wife a few weeks ago, spent an hour in a store with nothing to lean on, and was a wreck a few hours later, simply because I had to stand for too long. :mad:

I'm 29 now, so I've well and truly stopped growing. They were pretty happy that things were going to stay stable after my original X-rays a couple of years ago. As the pain hadn't resolved, I had an MRI this year, and it pretty much confirmed that nothing was going to be moving and that the pain was all muscular. So I won't really need checkups from here unless I blow a disc out, and I'll sure know when that happens. Thankfully, my fusion appears to be very rigid, and isn't likely to do anything evil. My only worry is that I've never had my organs checked out for linked malformations, but all seems to be OK on that front, so I'm not too concerned by it.

I have kyphoscoliosis, which is a combination of scoliosis and kyphosis. To sum it up really simply:
Scoliosis is where your spine curves left and/or right.
Kyphosis is where your spine curves forward and gives you a humpback (think of Quasimoto in 'The Hunchback of Notre Dame', and you have the idea!)
Lordosis is where your spine curves backwards. That's another kettle of fish entirely. :D
Just google 'kyphosis' and 'lordosis', and you'll usually get some pretty diagrams and good explanations of the differences.

I have about twice as much kyphosis as I do scoliosis... the way my vertebrae are fused makes my spine hunch and lean to the right, so the hunch is described as kyphosis, while the lean to the right is a scoliosis. Hope all that doesn't confuse you too much!

You really shouldn't need another MRI or anything like that. By 21, the bones aren't really growing or moving anywhere unless there's real stability issues, and judging by the doc's lack of concern, I'd say there's nothing to worry about there. Your pain is more than likely coming from your muscles instead, but it's probably best to get a specialist or a neuro to confirm that for you!

LEELEE85
07-03-2006, 01:44 AM
Thanks Javaboy.
Yeah i think its more muscle pain then anything, usually when i bend to the side its like my ribs are a little sore but then again it could be muscle pain.
I was fully grown by 15 yrs old so my specialist didn't think there would be any progression fingers crossed!!!!!!
I think the reason for my back starting to get sore is because the lack of exercise i've been doing, i use to swim for 10 yrs then stopped around 4 yrs ago. I'm now joining pilates!!! Any good????
And i go to the gym 3 times a week, thinking of going back to swimming as my chiro said its the best thing.
Thanks for your posts its really made me feel a little better. :)

javaboy
07-05-2006, 12:26 AM
Hi LeeLee,
I'm doing both pilates and swimming at the moment.
The pilates was excellent at first, but the strengthening seemed to stop after a while. It seems that it was simply because I didn't have the strength in my upper back to get any further benefit - it's a long story!
Anyway, I added swimming on the advice of my neuro, and the combination of the two is much, much better. For me, anyway. Most of my problems are high up in my neck and shoulders, and pilates starts down the bottom with your pelvic floor, so it took a while! ;)
I've also been walking as much as possible, as well as playing basketball once a week (I'm too much of an addict to not play!), but I've found that they can only do so much for my fitness while my muscles remain unbalanced. The swimming and pilates do far, far more for my fitness than anything else I try.
A few others on this forum also swear by yoga as an alternative to pilates, so if pilates doesn't work, it'd be worth a shot. :)

jemjem
09-26-2006, 06:46 AM
Hi there,

I was diagnosed with Scoliosis when I was 20, after being misdiagnosed and treated for 5 years prior to that. It took another seven and a half years for me to finally have my first surgery, which was Decompression and Discectomy, to try and free my trapped nerves, which didn't work. I had Major Spinal Reconstruction six months later, in June 2003, and have two titanium rods and 13 screws, all the way into my coccyx. I was in a Body Brace for six months after the operation. Then had the Cross Connectors removed two years ago as one of them moved out of place. My spine is now fully fused, and due to the discomfort of the metal work, I am currently waiting to have them removed. But, I ended up with a damaged Radial nerve in my left hand during my last surgery, and I'm left handed, which makes it worse. I live in London UK, and had my surgery at the Royal National Orthopaedic Hospital, in Stanmore.
I had a 43 degree curve, two sets of problems in my spine, as two vertebrae were fused together with my nerve trapped, and the base was damaged, and VERY bad case of sciatica, which almost crippled me. No exercise helped, it just made it worse, 50 an hour with Chiropractors which gave pain relief for half an hour or so then back to hell again. If possible, get in touch with the RNOH hospital, and see if someone can help you.. I wish you all the best, and please feel free to contact me if you need more info. I do feel for you all, as I have been there....and still dealing with it, as the pain does not go away 100%, as they tell you before the surgery. But it was worth it, as I now have a better quality of life than I did up to three and a half years ago, and would advise anyone to persevere until something is done as Scoliosis, and especially nerve pain, is the worst pain for anyone to have to cope with.