Residual Flow or New PAVM

Types of Avm's Pulmonary AVM, Heart AVMs & HHT
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Hello All,
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.

2 Questions:
(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.

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Heather,

You are in an area that I don’t know about but I hope some people in the @PulmonaryHeartHHT group might be able to help.

Very best wishes,

Richard

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Hello, I totally know how you are feeling. My Dr. doesn’t want to test me at all,
he actually Goggled it right in front of me! Hello thats the same thing I did! (Go figure) and my mother also has PAVM. Iam waiting on a second embolization as we speak you can read my story if like. I really believe that they don’t know about it because its so rare, they say we shouldnt have symptoms but thats reason for the findings.

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I know your post was a few years ago and I hope you’re doing well. I thought I would comment anyway. I have HHT, had multiple cerebral and pulmonary AVMs. My neurosurgeon was Dr Martin at UCLA’s HHT Center of Excellence in 2013. He developed the “bubble” test with another physician. My test was a Grade 5 and he told me my bubble test would be positive for life even after I had 3 large pulmonary AVMs embolized. I do have HHT, so have many other AVMs that are too small to treat. I’m 66 and lead a pretty normal life, considering.
If you have nosebleeds, the likelihood of an HHT diagnosis is high (but by now, you’ve had your genetic testing).

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