Anyone have scoliosis and ehlers danlos syndrome?
I'm wondering about how often these diseases run together, which one you were diagnosed with first, and what your symptoms were.
I had my first spinal fusion when I was 15, and then a revision last year when I was 38 that fused me t4-sacrum with iliac screws.
I've been wondering for about 10 years if I could possibly have ehlers danlos syndrome. But a recent surgery complication has really had me looking into it. I don't have the skin symptoms, my skin has always run towards dry. But I have about every other symptom. I first started questioning it when I was late term pregnant with my 11 year old, and developed public symphysis dysfunction. A midwife asked if I had ehlers danlos because of the that and my spine. I kind of looked into then, but I've looked into it more in recent years as my back started getting worse again. Then in April of this year, a year out from my revision surgery, I slightly slipped with my right leg going sideways and it broke one of iliac screws. Just like that. My neurosurgeon has said he believes me sacroiliac joints are more pliable than normal. I aslo have bad knees including instability and osteoarthritis. Only 40 and my left knee grinds so loud my 11 year gets grossed out.
Pic for attention. It's after my last surgery in June 2026 where thet took my ilaic 0screws out. You can see they had to leave part of thr broken bit at my SI joint because they it would cause more problems to try to remove.