New to site, possible diagnosis of a pulmonary AVM, and still confused and overwhelmed

A year ago I was 60, having total knee replacement surgery for the second time in two years (both times on the same knee), and after the surgery I had a pulmonary embolism. The PE resolved, but I’ve had low blood oxygen saturation levels since then. I’ve gone through a year’s worth of pulmonary & cardiac testing, and every test has been negative. Good news because some ugly diseases were eliminated, bad news because not having a diagnosis has been very difficult. Random episodes of low oxygen, don’t know when they’ll happen, so I have to carry a heavy O2 machine around with me, which makes walking even more difficult (see above: bad knees).

My most recent doc, a specialist in pulmonary hypertension, just told me that she thinks that I have an AVM in my lungs that is causing the inadequately oxygenated blood - but the AVM hasn’t yet been seen in multiple scans. I’m trying to find a new doctor, someone with experience with AVMs, who will be able to determine the cause of my oxygen problems. I’m in Detroit but willing to travel, so if you know of a good pulmonologist who knows how to deal with AVMs, in Detroit or elsewhere, please let me know.


Welcome to the site. I can’t offer much in respect to advice based on my experience. There is a lot of varied experiences here from all over, so hopefully someone will chime in. I have an AVM in the left temporal lobe of my brain that has been treated by gamma knife, so quite different than yours but no less troublesome for sure. I love to see the reference to Lake Huron, I lived in London Ontario for 3 years and my family an I had a seasonal camp site on Huron at Ipperwash, it is incredible! Again welcome, and I hope your diagnosis process makes some headway soon. Take Care, John.

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Thanks for the words of encouragement. And I think I know just where you’re talking about - near the Pinery? Beautiful area.

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Yes one left turn before the Pinery coming from the south. It is so beautiful. We plan to go again and see all our campground friends, have been back once in the last 5 years since we moved.

Hello, my name is Robin. I have a or some PAVMs for 4 years now. The problem is that the doctors haven’t been able to see it/them. They know they are there from the low O2 sats and high pulse. Recently I had a heart catheritazation while riding an incumbent bicycle at UCDavis by Dr. Whitcomb, a Cardio-Pulmonary-Radiologist. He confirmed the issue is in my lungs and my heart is still fine.
My question is this: is there a CT and/or MRA that I can do while exercising or use the adrenaline (?) drug to make my heart act as though I am exercising?
I feel if they could see it/them, then they could possibly treat it/them.
Thank you for your input, advice and encouragement,
Robin Hoffman

Hi Robin - I’m fairly new to the site, haven’t fully figured out how it works, and just realized you sent this to me, rather then posting it on a general page. I will get better at this!

I think you’re farther along the road than I am. I haven’t had all the testing that you have - I haven’t done the heart cath while exercising, only while still. (But I’m going to check into that!) I think I’m basically in the same position - they see evidence of a PAVM, but they can’t find it.

Unfortunately I don’t have an answer to your question. I wish I did! I know how frustrating this is, to not get a final answer, and I’ve only been going through it for a year now - after 4 years you must be beating your head against the wall. Sending my best and hoping for definitive answers and treatment for you.

Thank you, Cherie, Godspeed to you on your journey as well.
I guess I don’t quite understand how to post, but oh well.
It is nice to see another who is dealing with stuff. Thank you! :kissing_heart: