As you know I have the “luck” of having an AVM in my right foot, and more in both my eyes.
I originally asked to get the genetic test for HHT, but that wasn’t possible by my hospital in London at the moment. So the eye specialists down south (who as watching over the eye avms) referred me locally to the lung team.
After speaking to a very lovely consultant I am now going to get my lungs checked for more AVMs. A call yesterday to the booking team actually resulted in an appointment being available this afternoon.
So that is where things stand at the moment. I am now waiting for my scan (and frankly very anxious that I might have more and what that would mean).
I will update everyone once I have results - but if there is anyone who can share their experiences of lung avms I would really appreciate it.
For future reference - if anyone else is going to have a CT lung angiogram - when they inject the dye it will feel like you have wet yourself. You haven’t. Just as a heads up (because that had me panicking for five mins till my scan was done).
Hopefully I will get an all clear, but at least this bit is now over and done with.
It’s not just with lung CT. It has the same effect on me and mine have mostly been head scans. But as the dye goes in it’s like ‘…ooppss’ but on the other side all was OK. The radiologist had pre-warned me of the effect, thankfully.
Thank you! I am hoping to get the results at the latest on Thursday when I go to see my main consultant (London), but I am hoping that as they didn’t rush to contact me I am all clear. I will let everyone know when I get a result!
Excellent! So are you still just a foot-and-eye AVMer? Did you have a genetics test? I’m hoping you’re sorted with knowing everything and no option left for more surprises to come along
Yes (for the moment, at least), those are the only AVMs spotted.
Annoyingly my consultant can’t do genetic testing at the moment - so I don’t know if I risk having any more anywhere else. I just got to keep my fingers crossed (and hope they can check at some point for me and my family).
My lungs are all clear - no AVMS!
I just got to keep my fingers crossed (and hope they can check at some point for me and my family).