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I was diagnosed when I was 15, too late for me to brace. I had a lot of muscle pain and did chiropractic and PT but remained stable for many years. I also have SI joint dysfunction so it took a bit to realize I had 2 herniated discs out of the blue at 31 at L4-S1. My S curve was 39° with a cervicothoracic compensation curve at 17°.
I had 2 microdiscectomy surgeries a couple years apart but when degenerative disc disease and facet arthritis and new bulging discs kept me from doing anything I cared about it was time to try the fusion. I'd tried every possibility available to me, injections, meds, therapy, accupuncture, neurofeedback, tens, etc.
I was terrified but my only other choice was to keep playing jenga with my back or fuse. I created a bucket list when I scheduled the surgery of things I enjoyed that if things went wrong I would miss. Dancing, hiking, walking my dog, going to concerts, etc. The only one I couldn't do was hike but I managed to accomplish the others even if it was only 2 minutes of dancing because the pain stopped me. It helped me pass the days leading up to the surgery positively and with hope rather than awaiting something fearful. I also did a lot of research and ordered everything I could possibly need and packed items easy to dress in and set up house (nested). I missed some things that were unexpected but I had a lot of support. I even turned my enormous brace into a warrior costume so I'd bring a little joy to myself and others on the floor who were also struggling. I had funny shirts made and dressed up for st patricks day while I was in the hospital.
I don't remember the first night at all but apparently it was hard trying to control my pain, I won't lie ..it was excruciating and there were days I'd mostly sleep and cry with pain, muscle spasms and feeling so stiff but staff was super helpful and I had ZERO shame at this point. Just survive was all I thought and the in house OT was very helpful. The nurses kept saying how it was great I still had a sense of humor while I was there. It's important even just for a moment to laugh or have something to look forward to enjoying.
The first few weeks home I was in a lot of pain but found that getting up actually helped even though it was painful and exhausting but every day got a little better as I got my bearings and worked with home health. It seemed overnight that I was preferring to be up and doing my own things best I could with restrictions but still needed help.
I'm almost 3 months out now and it feels like the worst is a distant memory. I have a screw in each of my si joints as an anchor which still hurt but I'm taking care of myself and taking quick car trips daily. My muscles are finally settling in after decades of contraction on the left side and rarely bother me, except when I'm too active. I still have numbness and nerve pain in my right thigh from positioning during surgery (5 hours and ahead of schedule!) but we hope it will go away. Usually does according to other journeys I've read and my docs.
I still have tools I need to wipe, since I can't twist or reach down there much, and a grabber I carry on my back like a sword. I'm working from home as well. I have days that are hard but most of the time I'm doing ok. Soon I'll be able to take care of my dog and start outpatient PT. I still have plenty of challenges but nothing like I thought. I thought I'd still be bed bound or worse at this stage but I'm happy with my progress so far.
Fear is healthy and it's ok to be scared, this surgery is very tough but you soon realize how tough you are too. Everyone heals differently and has challenges but in a community like this we can overcome anything together. Stay positive when you can and let it out when you can't. Get creative and let people help you! Also eating healthy and lots of water is really key cuz constipation, bloat, illness, etc is not a struggle to be added on when your muscles hurt and you're tired and sore.
Sorry for the length but for many of us the journey's anything but short. Success stories are so hard to find online but believe me they exist, people just aren't sharing them as often.