I hope some PAVMers will share their experience. I had a PAVM found in a CT scan 8 months ago. It has been now been embolized and I had been told by my Pulmonary Specialist that he fully expected to never see me again and to resume life as usual. I went in for a 6 month check-up which included a CT, ECG and Bubble Study. The Bubble Study came back positive with a medium flow on beat 4. The Pulmonary Specialist said he thinks that the flow is residual and that there is nothing to worry about. He said we will repeat the scan in a year and if there is no change then we will do follow-ups every 3-5 years. This annoyed me, as he is not an expert in AVM’s, so I made an appointment at an HHT clinic. They are now waiting for my medical records so that the Intravenous Radiologist at the HHT clinic can review all of the reports and scans.
(1) Should I think about genetic testing to fully rule out HHT? From what I understand, insurance does not cover this. Does anyone know how much this costs?
(2) Has anyone in this group experienced residual blood flow after embolism of their PAVM? Or would you think it is more likely that I have another PAVM? I read that if done correctly, only 5% of patients experience residual blood flow after embolization.
Thank you as always for sharing your stories and suggestions.