All my life, I have always been diagnosed with a mixed low flow malformation of the neck and head, and I have already undergone several angio, MR and sono.The last fourth angio where I had low flow was done 10 years ago.Just a few months ago, I had a detailed MR and sono and I was clearly diagnosed with low flow without clear signs of high flow. Two month ago For the first time I had a series of spontaneous bleedings from the mouth, by chance only a couple of blood came out, nothing serious, and then the radiologist took me urgently for sclerotherapy or embolization according to what he will see on the angio. The angio showed that my lesion is supplied by the palatine ascendes artery branch. So he did an embolization to stop this flow… I assume that this means that I have an AVM. How is this possible that such a change in diagnosis even at the age of 38? Is it possible that these malformations can change over time or is it a diagnosis error? Thanks for the advice, I was desperate
Hi.
I don’t know the reasons why your VM or AVM has seemingly changed but there are a number of us who have an AVM diagnosed at a young age and then a bunch of us who are diagnosed at a much later age (I was about 50 when I was diagnosed). I’m pretty convinced that my AVM was acquired or developed over time as I could hear it (it was flowing into my transverse sinuses which then pass by the ears) and the first i heard of it was in about September 2015 – about age 50. Mine was diagnosed as a dural arteriovenous fistula and the impression I get is that these are as often as not acquired rather than congenital.
Also, untreated AVMs (to my understanding) will change, even those that have a small amount not successfully treated are inclined to grow from that remnant.
So I think it’s quite possible for your situation to be true rather than a misdiagnosis but I’m no doctor.
I hope these thoughts might help
Richard
Thank you for the answer. But my vascular specialist has now assured me that it is not true, that this time I was misdiagnosed and I have low flow for sure… Half a year ago I had a deep MRA where people who supposedly have very good experience in this area confirmed low flow… It calmed me down enough, but even so it is still not clear to me why this lesion has always pulsated… It is not a significant constant pulsation, but it is there and I have always read that low flow malformations never pulsate… It could be the constant rubbing of the large uvula against the tongue when swallowing, eating or snoring, but this pulsation is sometimes also in another part near the ear…Does anyone have experience with low flow malformation pulsation? This pulsation was there even when I had for many years low flow was diagnosed more than once for angiography…