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Kyndee Marie
- Female
- Carrollton, AL
- United States
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Kyndee Marie's Discussions
Adult Bracing
1 Reply
Started this discussion. Last reply by Kathryn Davis Sep 5.
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They (the medical profession) don't agree with bracing in Australia, even for kids, let alone adults, but it seems there are alot of adults who have braces that are @ least helping keep the pain @ bay. What sort of a brace have you got? Anything h...
Profile Information
- Do you have scoliosis?
- Yes
- Age:
- 21-30
- Sex:
- Female
Introduction
I am 29 and I wear a brace for scoliosis and kyphosis support, treatment and pain management. Its against convention I know and its by choice, my choice since I refuse surgery. I am here to talk and make friends with others similar to myself in interests and conditions.
Comment Wall (9 comments)
- At 5:38pm on November 9, 2009,
clare winstanley said…
- Hey,
im 20 iv had scoliosis all my life...
i had to wear a brace when i was a kid... i cant remember much about it, it really hurt me though so they had to take it off....
i had my operations when i was 12. to have the rods inserted and ribs took out etc, my spine still isnt straight infact its hardly changed at all. my nerves went in one of my feet so i could've ended up paralysed if they carried on straightenin my spine out anymore, i had a operation early this year because one of the rods had snapped... i get hell of alot of pain and painkillers really dont help... what do you do to ease your pain?? x x
- At 11:44pm on August 10, 2009,
remote chill said…
- I grew up with kyphoscoliosis that was diagnosed when i was in 6th grade, and I wore a Milwaukee brace from 8th grade until I had surgery two weeks before my 18th birthday. They took bone fragments from my femur and hip to fuse my lower spine and used distraction rods for my upper curve. I had complications after surgery, and honestly my recovery was worse than the surgery itself. I was bed bound for almost 3 months and after a year I still wasn't fully recovered.
I had my rod taken out about 3 years ago after giving birth to my second daughter and got some pain relief, if temporary. Right now I'm wearing a brace and I'm noticing that it helps with the pain from my kyphosis, but as soon as it's off my posture isn't as good and I sometimes have horrible pain, especially if I'm standing for longer periods.
Has anyone had experience with having surgery *after* having surgery to remove the implementation?
- At 5:59pm on August 6, 2009,
Kathryn Davis said…
- Hi Kyndee, I suppose surgeons only make $ from cutting us up, which is prob why they dont like the idea of bracing (it might put them out of a job!). To me a brace for adults seems to some make sense, esp if it's helped you get off the meds. I'm on ridiculous amounts of Oxycontin, Valium (for muscle spasms), sleeping tablets & anti-inflammatories etc just so I can get in & out of bed. The Dept of Health won't increase my meds, yet they dont offer any alternatives (other then surgery). Although I think I'm very lucky to live in Aust as we have Medicare which pays for Dr's appts, surgery (I'm on a 6 month waiting list) & a fantastic PBS system where the government buys the meds from the drug companies & subsidies them to the public. Because I'm on a disability pension I only pay around $5-$6 per script until I've bought approx A$280 of meds then it's all free. I dont know how you guys in the States manage financially (even with insurance). The down side here is that the government decides how much pain you're in (or not) & as I mentioned I cant find a Dr who believes in bracing, even in the private system. I dont want to have surgery, it seems archaic & brutal, although I have put it off for 10 yrs, & in that time I've gone from having a sore back to being basically immobile. I'm starting to feel like having my spinal cord severed & being a paraplegic would offer a better quality of life-I dont really mean that but the pain can get so bad that silly irrational thoughts start to make sense. I dont want to have the surgery & then find that in 5-10 yrs (which is prob to long to wait) there's a more affective, less-invasive method available. That's what happened to me with my heart. I have a genetic heart condition called Hypertrophic Obstructive Cardiomyopathy (HOCM), & had open heart surgery when I was 17. A yr or 2 later they developed a way of 'fixing' HOCM patients with keyhole surgery (although waiting was not an option for me). I think I'll let my GP know that a brace might @ least help me lower my meds, then he might push the so-called experts to investigate the option.
Love Kathryn.
- At 3:32pm on August 5, 2009,
Kathryn Davis said…
- Hi Kyndee, I've uploaded some very unflatering photos of my back, I'll upload some xrays asap. I saw my surgeon today. My cob angle is now 60 degrees. Surgery has been the only option offered to me. They don't tend to even offer kids braces in Aus-they 'd rather cut you up. Thanks for your comments, I've been feeling like the only adult in the world with untreated scoliosis until I found this site.
- At 1:19pm on August 4, 2009,
Kathryn Davis said…
- Hi Kyndee. I am 31 yrs old & have also avoided surgery. When I was 19 the surgeons wanted to fuse 7 of my veribrae. I'm off to see the surgeon again tomorrow. I have been told they want to fuse 13 vertibrae now, although I now have bone spurs on L3,4 & 5. The last surgeon I saw said they couldn't do the surgery because of the spurs (which according to her are the major cause of my pain, & have nothing to do with my scoliosis (I find this hard to believe)). I am on 600 mg of Oxycontin for the pain which controls my life (both the pain & the meds). I am in Australia, & because of our low population there is very little specific treatment for scoliosis. Have you heard or come across the Scroth treatment/method (scoliosis specific physio/exercises, originating in Germany) or any Scoliosis Inpatient rehabs (SIR)? I can pass on more specific details of my scoliosis (I basically have a corkscrew for a spine) & Xrays etc after my appt tomorrow. Has the brace helped? Has it prevented further curvature? I wouldn't wish this affliction on anyone, however it is nice to realise there are others that can empathise. Good luck, be in touch, Kathryn.
- At 8:01pm on August 2, 2009,
gayle said… - The pics of your back i can relate to . I mean my back isn't identical to yours but it's not straight . Do you have any kids or do you worry if you did it would pass to them. I have a son and he doesn't have it thank God . His biological father has a very straight back and he takes after him not me.
- At 3:41am on July 16, 2009,
gayle said…
- O I dont really tilt forward mainly side ways a bit.
- At 6:40pm on July 14, 2009,
gayle said…
- What is kyphosis? Would i know if i have it?
- At 7:11pm on July 12, 2009,
gayle said…
- Hi I'm Gail I have a 24 degree lower back curve. What degree curve do you have?
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