I am a French mother of 2 living in UK. I was diagnosed last July with a giant pelvic AVM. I have not been told how big, I noticed a lot of you give size in centimetres, just that some of my veins are as big as my aorta and I have a lot of “malformaties”. Words such as massive/giant/ never seen etc were also used and were quite alarming at first. On the bright side, I now have a reason as to why I am permanently looking seven months pregnant. That’s actually two positive right there: no need to waste time on diets and when people give up their seats on trains and buses, I don’t refuse
I have been very lucky that I have never had a bleed, abnormal bleeding yes but no rupture as such. Apparently it is actually a miracle that I gave birth to two children without haemorrhaging! I must have a guardian angel. Nevertheless, I am quite worried as what would happen if I did. My vascular surgeon was trying not to be too alarmist when discussing emergency surgical intervention and he said that I am at medium risk of bleeding for now. Indeed, there’s no treatment for me, not even embolisation for multiple reasons. At the moment, my vascular surgeon was contacting other experts across UK and looking for experimental treatments. So it is a lot of wait and see and hope for the best, which is easier said than done at times.
In terms of symptoms, my heart is enlarged due to the AVM but pumping well, so all good, but my legs can be very painful. Pains are worse during my cycles, I had a procedure 4 years ago to treat menorrhagia, so they are currently using Zoladex to put me in menopause (I am 46 soon 47).
More and more, I also struggle going upstairs / uphill and get spasms / cramps due to issues with my blood circulation ( a lot of my blood is redirected in my pelvis by the AVM so it does not make its way to the legs hence the enlarged heart which has to pump more). However, some days I am great and could be running all around the school ( I am a teacher), no problem.
I have found that making sure I sleep enough (sorry kids books won’t be marked this week) and put my legs up at the end of day (sorry hubby and kids but you’re in charge), helps a lot. Another positive there! ) When I am in pain, I also massage my legs with lavender oil and it is incredible how it helps.
Anyway I would love to hear from anybody in a similar position ( I am made to feel very “unique” and therefore very alone at the hospital). Your experience, treatment, symptoms, signs to watch out for, anything that helps, any nuggets of wisdom or just hello would be appreciated.