Comment

Moderator Comment by dancermom on Friday

You just have to see this wonderful video of little Nikki:

https://www.facebook.com/photo.php?v=10151416473682677

Isn't she a darling?

Moderator Comment by dancermom on Thursday

You might also want to investigate Asia, particularly Japan, Korea, and India; many research articles about facial AVMs are written in those countries.

Moderator Comment by dancermom on Thursday

Hi, Karasik, I'm afraid no one on the site has yet reported having a facial AVM cured in Europe. I suggest you look up Soteris, Adam Lapinski, and Patricia Leal using the search box; they are Europeans with facial avms, and may have advice for you.

Comment by DeeDee on Wednesday

Hi Eileen, STA was referring to the superficial temporal artery as from what I have read most scalp avm's usually come from that artery or the occipital. I am just very happy there is no brain connection as we are all too aware of the consequences of that.

Dancermom, I did specifically ask if they are still calling it an avm and he said yes. I should know more in a few months. My mri is not til the end of June & then I have to wait to get back in to see the neurosurgeon.

Thanks for all your input everyone, greatly appreciated.
DeeDee

Moderator Comment by eileen on Tuesday

DeeDee; Simpler sounds better to me, so I agree that this sounds like good news. STA? I have to ask what that is; this part of the body is not my specialty. Best wishes on your journey. I hope it is the good news that we think it is. MY VM is very complicated and tangled. Really impossible to treat; just to manage pain. If this were extra-cranial, the repercussions would be huge.

Comment by DeeDee on Tuesday

Met with my GP & he confirmed that I had a TIA after cerebral angiogram. He said it was related to the dye. I don't see the neurosurgon until I have my MRI for my neck. I did find out that my extracranial avm is coming from the meningeal artery and has only one draining vessel. I take that as good news. The nidus is about 2.5cm I believe. GP not sure what the neurosurgeon will want to do. I was surprised because I thought it was coming from the STA!!!! At this point I don't think I want anybody touching it but I don't know for sure. I am still researching this artery.

DeeDee

Moderator Comment by dancermom on May 5, 2013 at 10:24pm

To our UK members with arm or leg AVMs: a member of the Klippel-Trenaunay group on FB recommends Dr. George Hamilton at the Royal Free Hospital in London as being very knowledgeable. If you have been having difficulty getting proper treatment, please give him a try.

Comment by tommyt69 on May 5, 2013 at 12:48pm

Dancer sometimes the valves in the veins can feel large and somewhat hard. Hopefully that is all it is.

Moderator Comment by dancermom on May 5, 2013 at 12:46pm

Yes, his veins have changed this year due to the partnering/lifting. There is one dancer in the program whose veins are so prominent it actually worries me.

Moderator Comment by eileen on May 5, 2013 at 12:34pm

Has anyone but me noticed that arm veins of dancers are more visible? Perhaps b/c they use their arms to hold weight as much as we use our legs which naturally have more strenghth to help blood to heart to heart, against gravity.

perhaps all sports that require upper body strength.

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