I posted recently that I just joined this group I was diagnosed with dural AVM and aneurysm. I have hyper mobile joints and have had a lot of things that support some type of ehlers danlos (hernia repaired x 2, preterm labor with unknown cause x2, jaw dislocation, easy bruising and pale skin)… I have a geneticist appointment in January 2026 but my cerebral angiogram scheduled for 11/21/25… if I have some type of vascular EDS it seems like an angiogram is dangerous. Does anyone have any thoughts? Should I push off the angiogram and await my genetic appointment? Thanks so much!
Personally I would have that discussion with my care provider, and assess any identified risks to inform my decision. Sorry for the “stock” answer, but I base a lot of what I have done on carefully assessing the pros and cons. I have led a career of assessing risk and taking the required action, and sometimes inaction, to come to my decision. Easy to say, much tougher to do particularly in unclear health matters. Trust you care providers, and be at peace with your decision. One factor for fo in my personal health is I would accept a little more risk to know more detail, as not knowing sometimes impacted my health ie// mental health, in ways that I could avoid.
Hope this helps, but it is a personal decision based on all you know at the time. Take Care, John.
Have you gotten a diagnosis or screening? I was finally diagnosed with hypermobile EDS last year. I think it’s worth knowing. I’ve not had genetic testing as I fit the hypermobile category, though she did also mention possible classic or classic like (I forget which!)
Anyway, I hope you’ve moved forwards and been able to make some real headway health wise