So my doctor’s have told me that no matter how much we treat my AVM it will continue to grow. As of my last surgery they said we have about 60% of it treated. They said that after I have 2 maybe 3 more big treatments we could probably take a break for a few years. If we get the majority or all of it treated, how will it keep growing? Will it just spread to other parts of my body or something?
The impression I get is that if you get your AVM somewhere between 100% and 101% then it doesn’t generally regrow. But if you miss even a tiny bit of it, it will continue to enlarge from whatever residue there is.
So if your AVM is difficult to treat 100% then it becomes something of an ongoing story. And I also get the feeling that because the vessels involved in the pelvic area are really rather large, actually successfully blocking all that’s needed is unlikely to be achieved.
But I don’t know: I’m not a doctor. I’m just giving you my gut feel from reading posts from here over the last few years.
It doesn’t matter where your AVM is: if you don’t get it at least 100% then that bit of residue is the seed for future expansion. Setting it back significantly is as good a plan as there is sometimes.
These are my thoughts. Hope they help
One can continue dreaming I suppose is there no medication or treatment that can inhibit growth ?
I’m not a doctor but I’ve not read of anything [yet]. It is definitely a problem that a number of us have: you are not alone.
I’ve had a internal iliac avm. Found while I had a uti 12 years ago.
Had 2 embolizations in 2012. It seemed to settle down for a few years. At that time it was 2.2x5 cm. Did annual ct until 2015 when had other health issues. 2021 had another ct and it became more symptomatic and grown to 3x10 cm. My symptoms had gotten increasingly worse the past year.
Keep in mind everyone is completely different. I will probably have more embolizations. But it will only help temporarily. An avm cannot be cured. Hopefully some people will have little or no symptoms.
Stay positive and find a good doctor. Hope this helps.
All the best……
Trials / research pioneered by Royal free London hospital in conjunction with UCL.
Currently used with facial /extremeties patient.
Slowly being talked about / taken up (?) in other UK hospitals
Can’t imagine it to ever be useful with brain/spinal or other avms where blocking cellular regeneration/growth would be an issue.
As mentioned here already by others I was also told if an AVM cannot be removed 100% then it will likely regrow… as technology advances who knows what the future holds for AVM treatment as I’ve experienced much advanced treatment in under 10 years, which is mine blowing… God bless!