u/FarConsideration2663

Hi - haven't had HHT testing, mostly because everything is constantly going to shit, so it seems like less of a priority than fixing the AVMs.

2000- chemo, no radiation, bone marrow transplant from brother

2011-large spinal AVM embolized that ate through c5

2014- small left lung AVM

2025- 4 brain AVMs

2026- 1 brain AVM; four months later my symptoms are spiking and I feel a new one growing

Question: I can't find how many embolizations a person can realistically live with? There's no research I can find that says someone who has two or three embolized a year can live ballpark x years. Does anyone here have 576 embolizations and is living a more or less normal existence??