Hello @azurejasper A wonderful post(even with painful reasonings)....it's beautiful to witness your love for your wife in these words. I am a fellow EDS-er (part of the Zebra family too, if you will!) with similar comorbids. I know this disease is quite difficult and healing from surgeries is a long road. "Normal" is vastly different each day however it does become easier to manage with time, even with the progression. Your wife sounds like an amazing, loving and very strong woman!
Curious, Who is her neurosurgeon surgeon? One of the EDS/Chiari/CCI, etc experienced doctors? Dr B (NY-can give more info if desired) did my CCF for the CCI and leak repairs (had to forgo the decompression once leaks found) ICP bolt insercion and tethered cord release. I was only diagnosed recently too....also took my body crashing to get the diagnosis (and no longer called crazy!). Im so sorry this was your wife's experience as well. Lots of great support groups on Facebook. I would love to start an EDS and it's comorbids support group on here! Once she's on the mend perhaps we could pool our energy to create such a thing! Best of luck in the next surgery. I will keep you both and your children in my heart. One moment at a time.... ❤️. If in need of any medical resources, please let me know and I'll help however possible. Thank you for your courage and vaunerability in writing this post! Thinking of you @girlbeforemirror!
Lots of healing energy coming your way!
❤️-Stephanie Price
Ps If you need any support or information Facebook messenger would be easiest first contact. Or I will get set up with steem chat. Kintoallbeings on Facebook too. :)