Hello everyone,
thanks for the support on this forum. I’m writing from Italy.
I write on behalf of my mum, 60 year old woman; after seeing a bump on the right leg (1,5 years ago) my mom had an MRI scan with contrast liquid. The outcome of the MRI is an AVM inside the leg muscle.
She reperformed another MRI after 7/8 month with the same outcome of the previous.
Recently she had an ultrasound scan (basically after 1.5 year after the finding) and it showed that increased in size of about 1 cm.
I have few questions:
Is it the MRI with liquid contrast a gold standard for diagnose AVM?
Is it possible to have found out the existence of an AVM at 60 years old? Apparently my mom says she never noticed before.
Regarding the MRI with contrast - I couldn’t say 100% that this is the gold standard, but from my experience, it is something they use a lot in the UK to monitor them (at least for me). When they perform embolisation in the UK, they seem to do an angiogram as well. So my best guess here would be that it is pretty much up there as one of the better methods to diagnose.
Regarding the AVM only being identified at 60 years old - from what reading I have done, you can have AVMs your whole life and never have an issue. Often they are found when doing a scan for something else, so this isn’t surprising.
Regarding whether it will grow - I honestly don’t know. This is a question for an AVM specialist, sorry!
Hope this helps a little.
Can I just add - that the community here is really great and very supportive, so don’t ever worry about asking any questions that come to mind. They are all super cool!
My AVM (pelvic) was diagnosed at 46 and I believe it is not uncommon for people to have their AVM diagnosed in their 40s, 50s and beyond. It is not usually discovered unless it poses problems so asymptomatic people may live their life without ever being diagnosed.
As a general rule here, in UK, they will go by symptoms rather than growth, and they will not do anything to it unless it causes problems. I think the exception to that might be for brain AVMs, due to the risks associated with a bleed. However, if caught in time, there are some effective treatments for our brain AVM friends. AVMs anywhere else are generally less risky and less scary but much messier to deal with. My take, by the way.
Symptoms vary but pain is enemy number 1. I would say for leg AVMs to also watch out for ulcers and difficulty walking. I am sure people on here will be able to help you further. There is an extremity AVM member group on Facebook that you can join too .
If your mom is monitored and does not have symptoms, apart from the lump, it is one of the better situations to be in and I pray that it continues.
Hi there and sorry for the troubles you’re having. To go along with what’s already been discussed I was told that generally, the MRI with contrast is utilized to detect the presence of an AVM. Then, a follow-up angiogram either from the wrist or the groin is utilized to target and treat the AVM either from embolization, gamma knife or other. As always, check with your treatment team for your specific situation but I wish you all the best as they decide the best treatment option for you.
Hi Stefano, I have literally no clue as to your questions. (What a big help I am!) I’m really only throwing my two cents in because your mum and I are about the same age so I can relate to her situation on an emotional level.
I’m sure she’s experiencing fear due to the uncertainty and also frustration. The usual questions: “Why me?” “Why now” and if she’s super religious she might even wonder, “What did I do to deserve this?” Those are all common so she shouldn’t feel weird.
At the same time it could be a long process, that’s just reality. The worst case scenario sucks. But on the good side she should be able to maintain a great quality of life, especially if she gets to see her beloved son (you) and know that he cares. Welcome and best wishes for your mum, Greg
