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Scoliosis Stories

“My name is Cayla and I was diagnosed with scoliosis at the age of 10. I had to wear a back brace for 24 hours a day in middle school, but I took it off more often than I should have. (Oops 🤷‍♀️) When I was 15 my curvature was not improving so my doctor said it was time for surgery. I had a 70 degree thoracic curve and a 68 degree lumbar curve. After a month post op I went to see my surgeon and my lumbar curve actually got worse so he quickly decided to go back in and correct the lumbar region as well. 2 surgeries later I had 2 rods and 26 screws in my spine! Fast forward to 12 years later and in 2018 I started experiencing severe nerve pain in my legs. Nerve pain so bad it made walking, sitting, and standing for any period of time super difficult. All tests were inconclusive so my same surgeon suggested removing all my hardware. So here we go with surgery number 3! When he removed my hardware he found 2 screws that were compressing my nerves in my lumbar spine. However, when he pulled one of those screws out I leaked out spinal fluid and a few days later developed a spinal fluid headache. After a week of bed rest with no sign of improvement I was sent back to the hospital and they discovered that there was a huge collection of spinal fluid sitting in my back. So guess what? Another surgery was scheduled to stop or fix the leak, but it ended up being unsuccessful. I then had 2 drains placed into my back: a lumbar drain and a subarachnoid drain to drain my spinal fluid and excess fluid. After a month in the hospital and a month of laying flat in a bed without being able to sit up or walk, I was FINALLY able to sit up with no pain! The CSF headache was the hardest thing I had to overcome physically in my scoliosis journey. 4 back surgeries later and I wear this necklace and share my story for anyone else struggling with scoliosis or nerve pain so they know they are NOT alone and they know that I share in their pain!  My scar represents purpose and perseverance and I wear it with pride!” @csarge38

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