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Old 8th July 2014, 06:34 AM
Steph1975 Steph1975 is offline
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Join Date: Jul 2014
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Red face Very worried!

I was diagnosed with scoliosis at age 8 and surgery at age 9. They placed a Harrighton Rod in my upper back. I was better for several years. Throughout my 3 pregnancies I had to see "specialists" incase of complications. But I did fine..my last child was born in 2003. A few yrs later near my 30's I started to expierance more pain than usual. I never really considered it much pain I'm guessing because I was just use to the aches I'd get. Have been treated by pain management dr's but nothing about it being worse was ever said. So many ppl made me feel like I was just a complainer..thinking I should have no pain. Because they have heard of other success stories. All I know much at this time is my back was fused at T12 which a dr has recently told me that today no dr would ever fuse there. Well now I'm with a new dr that ordered 20 or more X-rays and I finally seen him a wk ago. Oh by the way the other dr's claimed a lot of my pain was arthritis related. Now from the new X-rays the dr is concerned the way my lower spine is curved (which I've always had lower back pain) is possibly worth surgery again but first wants me to get an MRI and a bone density test. He seems to think it may be osteoperiosis. Not blaming my family but techniqually was never completely "released" as a child. And all these yrs I've dealt with this alone like I said everyone thought everything else was wrong but the scoliosis. I've been reading up on it more lately and all the symptoms is ME!! Depression, anxiety, anti social, anger, not a steady relationship..and aches in every place others claim to have. Weakness and very fatigue other symptoms. As I'm about to turn 39 this year, now learning more on this any input I could get would be very grateful!! I am scared the bone density test will show that some of the bones are too thin to ever have surgery an option. Anyone else have these same symptoms? Seems now that I've read up on it and can identify certain areas it hurts almost intolerable at times! But tryn to keep going and wrk to provide for my children! I know I need these tests ASAP but scarooled of dr bills adding to quick. Yes I have insurance and unsure what will have to cost me out of pocket and struggle enough now. Feeling alone as if ppl think I make up pain..any suggestions? Just wanna stay out of a wheel chair as long as possible. So very scared to hear the truth if not too great and only time will tell..scared of all this. Pls help😁
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Old 8th July 2014, 08:47 AM
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tonibunny tonibunny is offline
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Default Re: Very worried!

Hi Steph, welcome to SSO

Fom the date in your username, it sounds as though you are about the same age as I am. I had scoliosis since I was a baby and had my thoracic spine (T1-T12) fused with a Harrington Rod aged 12.

Do you know if you had a single curve or a double curve? If you have a double curve, it is quite common for the unfused lumbar curve to continue to progress if you just have the thoracic one fused. Whatever doctor it was who told you that "no doctor would ever fuse to T12" was talking a lot of rot - surgeons will fuse whichever vertebrae they need to in order to straighten a curve, and plenty of people here are fused at T12 with no problems. In fact, since T12 is pretty much in the middle of your back, it's uncommon to find anyone who has had surgery who doesn't have a fused T12! Those who don't are likely to be the few who have primary lumbar curves with unfused thoracic spines, which doesn't happen often in younger people.

Do you know the degree (size) of your curvatures, both before and after surgery?

I had my thoracic spine fused to fix my upper curve at ten, but they left my lower, lumbar curve untouched for as long as possible in order to allow me to continue to grow (since fused bits of spine can no longer grow). I finally had that curve fused at 18 when it became clear we couldn't leave it unfused for much longer. It sounds as though this is the sort of surgery you should have had a while ago. Scoliosis does predispose us to degenerative changes in the spine due to the uneven loads placed on it, so fusion surgery may help you a lot. In your position I would definitely go for it.

Depression, anger, and social anxiety etc are not symptoms that are specific to scoliosis per se. It is pretty normal that someone with any sort of longterm medical issues and pain would develop these problems though. Again, a lot of members here will relate to how you feel. I hope we can help to support you through this

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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