My 14 year old daughter had her AVM removed for the 2nd time from her thigh. It wasn't diagnosed as an AVM until the 2nd operation, and they ended up locating the pathology from the first lump removal to discover it was an AVM with lymph nodes (?). It had bled and was a typical AVM but I guess the Dr hadn't seen one before.
The most recent surgery was 5 months ago and she enjoyed 4 months pain free (apart from the big scar) and has now been hit with high levels of pain again. She is also saying her head hurts.
The head thing hasn't been happening for a long time, just a week or so, - but she knows her extreme thigh pain well and certainly she can feel a lump growing again and knows the symptoms. It's back. She will see her surgeon again in a month but there is obviously no point doing surgery again. After 2 removals it appears it is pretty determined to grow back.
I guess I'm asking if anyone knows if they can spread elsewhere after surgery - if it were to be aggravated could it spread to her brain? I'm also wondering if anyone has experienced them growing back so quickly - and if so, what should/can she do?
The pain is quite strong - comes and goes - causes her to wake up at night - she can't climb stairs very easily or sit in a chair for long, she's always experiencing a level of pain.
Any similar experiences with possible options would be great.
Hi Gretta, AVM's do not spread and normally AVM's are formed as the body is forming in the Womb, But a person can have multiple AVM's in various areas. Please consult with your doctors on the above issues. It takes a long time for the head to heal after surgery, I had 2 and know that even after years you still get phantom pains and I suffer from headaches each day. For me when I don't get enough sleep or are stressed then this makes the pain worse. So I would suggest making an appointment with your daughters doctors and consult with them as they are the people that know her history :), Thanks and I hope everything works out fine.
Thanks very much for your reply. I really appreciate it.
Her AVM is in her leg, in her hamstring.
We have an appointment with her Dr in a month, but I'm hoping people on this site might know some hints about the buggers returning.
Good luck with yours.
I have to agree with Martin ive never heard of any coming back in different areas...i suggest wait and see the doctor and let us know how you go...God bless!
Gretta, you and your daughter must be so frustrated. Exretemity AVMs are so difficult to treat and more times than not, grow back with a vengence. Like the others have said, AVMs do not spread but it is possible to have more than one. It's highly unlikely unless there is another underlying condition, like HHT, which can lead to multiple AVMs. Discuss your concerns with your daughter's doctors. I wish her the best going forward.
I really appreciate the reply.
All the best.
Thank you for your message.
It's a relief to hear they don't spread. I looked up HHT and my daughter really doesn't match the symptoms mentioned there however I will still ask the Dr.
All the best,
Thanks Gretta, Its a pleasure to be able to help here :) , My journey is at its end and I'm AVM Free and 2 brain surgeries, Tough to deal with mentally more than physically for me. But having an AVM has taught me to worry less about the little things and enjoy what I have rather than chase what I don't have :) , I hope that your daughter is not too young at the moment that she doesn't take some good in the future from this experience and learns that as Forrest Gump said " Life is like a box of chocolates !" you really never know with life and just have to play the cards your dealt with :) , Might be a rubbish deck but just play the best you can. Take care again and thanks, Keep us in formed if you can.
Hi Gretta. I wish you and your daughter all the very best. Hope you manage to get it sorted. I would echo what others have said here. In my somewhat limited knowledge I don't think they can spread. However it is possible to be born with more than one (even if they don't show up until later in life) and they can also regrow once removed unless the whole thing is definitely out. If not the remaining bit can just recruit more vessels. Good luck.
Hi Thanks for replying Lulu,
Glad to hear they don't spread from everyone.
Now just to tackle the one that grows back...