I have had an AVM in my left foot for about 13 years now, but only recently have begun finding numerous others throughout my body. In the past few months I have found one in my occipital lobe, lumbar spine, left middle finger, and ankle. Has anyone else had them show up much later than their initial one? Or does anyone know of any conditions that would be associated with multiple vascular malformations? My entire body just feels exhausted all the time, and its something I am not sure I know how to handle anymore
The only thing I know of with multiples is HHT, Hereditary Haemorrhagic Telangiectasia. I get the impression that AVMs that present a real danger need sorting but whether you’d try to sort out every one I don’t know.
We do have members here with HHT in the @PulmonaryHeartHHT group. I created that specific grouping because from reading various stories here, multiple AVMs and pulmonary, heart and perhaps gastrointestinal AVMs seemed more linked to HHT. Since then, many of our HHT members that I’ve seen posting have reported brain AVMs as part of their multiplicity.
There are other conditions which bring AVMs with them. I’ll have a look and see which those are and whether they seem relevant. The others I can think of are:
- Klippel Trelaunay syndrome. I think the main identifier for this is an enlarged limb, so may be relevant to you.
- Wyburn Mason syndrome. As far as I know, this is much more head-related than limb-related and we have 2-3 Wyburn Mason members here.
Hope this helps,
The other AVM-related conditions I’ve heard of (but couldn’t bring to mind) are:
- Parkes Weber syndrome.
- Sturge Weber syndrome.
There may well be other syndromes that bring AVMs. These are just the ones I’ve heard of.
Hope these things help.
I don’t think I quite fit the category but in the 40 years that I’ve been wandering this desert, I’ve had to deal with my AVM 4 specific times - and each of them was because it had grown, evolved, changed and was to the point of the risks being outweighed by the rewards of treating it. 1978, 1986, 2009 and then this year. And I have to keep reminding myself that what I’m dealing with in terms of as I like to call them, “aftershocks” are significantly better than a brain bleed.
Don’t know if that helps at all…
Thanks Richard! That does actually help immensely. Just having some names, and things to look for. My doctor is still stumped, and the frustration is building.
Id have a look into Klippel Trelaunay and Parkes Weber as they both involve limbs.