I am officially four weeks post op from my spinal fusion today! It’s been quite a journey. They fused my skull to my spine (c2) with metal, donated bone, and my own bone marrow to save my life. My surgeons, the hospital staff, and my loved ones have been instrumental in recovery going so well. I was so lucky to have surgeons who were experts in my genetic condition and a hospital staff knowledgeable in it. It was night and day level of care from my previous spine surgery. My mom and boyfriend have been taking care of me for the last month and I am so so grateful to them. With the amount of care I’ve needed, it definitely hasn’t been easy and I’m not always the most patient person with recovery but they’ve done so well.
I get the rest of my stitches out tomorrow and then I can finally wash my hair for the first time in a month. I am so excited to be moving forward.
It’s still a long road to recovery ahead of us and there are ups and downs and roadblocks every day. But in a month so much has changed already. The biggest change is I haven’t stopped breathing since the surgery so it most definitely saved my life. My dystonia (involuntary muscle movement) is also improving which is huge because that was debilitating. Most of the time, I don’t have the headache I was living constantly for almost a year before surgery. Since this surgery recovery is measured in months and years, not weeks, a lot of the benefits won’t be seen for a while yet. I’m hoping it will greatly help my pain and get me back to work. At the very least, it’s going to get me out of bed which is life changing. I start physical therapy in the next couple of weeks and cannot wait to see the benefits of this surgery and get back to being active and having a life again. - - #cci #craniocervicalinstability #ehlersdanlossyndrome #eds #heds #atlantoaxialinstability #aai #spinalfusion #fusion #spinesurgery #aspenvista #selfie #chronicillness #spoonie #recovery #zebra https://www.instagram.com/p/B3FxFuvjIiT/?igshid=1f4bzr4px24mm
