AVM and Pulmonary Embolisms

My sister has had 2 strokes since Dec. After her 2nd stroke and 2 pulmonary embolisms & treatment with blood thinners....She had her 2nd stroke. At that point they found the Cavernoma.They Took her off blood thinners etc. Long story so I'll skip to the end. She again has developed a pulmonary embolism and is back in the hospital. Since she has the AVM (Cavernoma) she really shouldn't be on blood thinners, yet they need to treat the clot. Does anyone have any experience with this type of situation. We are desperate for info as her Dr.'s at this hospital have varying opinions and seem to be a bit stumped. Looking into getting her to Boston/NYC to more specialized Doctors who see more of these situations. I am thinking she needs a team approach....Neurologist,Hematologist and a Pulmonologist? Any insight would be greatly appreciated!!


Abish, I’m glad you’re being an advocate for your sister. I think you are on the right track. Finding doctors who have extensive experience with this type of issue is key. Don’t be afraid to ask questions about the doctor’s experience - you want the experts. You’ll find them in NY & Boston. I wish you and your sister the best!