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Scoliosis - Introduce yourself and meet others
Spine Health | Last Active: 2 days ago | Replies (443)Comment receiving replies
Hi Kate,
My name is Kristen. I am a 52 yr old living with an S shaped curve from adolescence. It is progressively getting worse, also recently diagnosed with osteoporosis in my spine. It has been suggested by the spine surgeon that I will probably have surgery within 5 years, although I currently don’t take anything for pain. An endocrinologist suggested taking Prolia for bone health, then switching to Forteo before my surgery to build up bone, then continue it for 3-6 months after surgery. I am hoping to not have surgery, but don’t know what happen in the future with severity of curve and pain.
I would love to hear from people who have had the surgery and what their experience is afterward.
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Hi Kristen, I am a 57 year old female also living with an S shaped curve from adolescence (although not discovered until I was an adult). I have maintained an active lifestyle, although the pain is progressing. Five years ago I would have said "I can live with this". I still can, but not if the pain continues to progress at this rate. I am only taking Aleve for the pain and don't want to advance beyond that.
I've also been diagnosed with osteoporosis in my spine and I'm being told I should have the surgery sooner than later or I run the risk of no longer being a candidate. I am currently taking Tymlos (similar to Forteo) to strengthen my bones before a long fusion (T2 to S1). I originally was planning the surgery for September 2021, but my bone density after 4 months of Tymlos was still too low. They now want me on the Tymlos for one year prior and one year after the surgery (now planning for April 2022).
Given the progression, my greatest fear is that my bone density will not get to where it needs to be for the surgery. Close behind this fear, is what if it does and I have the surgery and what my life will be like after that. I haven't been able to find anyone with a long fusion close to my age that had an active lifestyle.
I feel conflicted because I fear both not being able to have the surgery as much as having the surgery and experiencing a significant change in my lifestyle.
I know that I'm not being responsive to your inquiry to find someone that has had the surgery. I wish you luck and would be interested in hearing more about your journey.