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Bill Johnson, Dunmore, Pa.

Norma,

Sounds like you have more experience regarding these than I, but I have
experienced the same frustration.  And I abhor kids with problems I cannot
solve.  I do not abhor the kids, just the problems.  I also hate myself for
not being able to find something that might help them.

Did you investigate for venous reflux in veins near the malformation?
Feeding veins become "arterialized" with thickened walls and valvular
incompetence.  But I presume this takes some time, and if no areas of
increased velocity are detected, I am not sure these changes are detectable,
either, even though clinical changes are obvious.

Carol Vandenberg's message is helpful, I think, giving insight to why we seem
unable to contribute solutions.  These AVM's are not like traumatic ones, or
congenital ones that present in adulthood.  Traumatic AVM's are very dynamic,
hard to miss if you look for them or stumble upon them.  But the little guys
are usually not macro-vascular.  As our technology continues to advance,
perhaps we can gain the necessary insight.  There are still limits to our
technology, and these are still "unusual" cases for all of us.  Any insight
out there?

Until someone tells me how and what I should do, I continue like you to be
frustrated.  Until then, how old were your patients?  And do you have any
insight, or does anyone have, regarding "normal" flow parameters in 10 year
olds or 10 day olds?  Not our usual clientele, but does our criteria fit a
fifteen year old with a possible arterial problem?  I wonder.

Many years ago, I was asked to write an article regarding AVM's of the head
and neck for the Bruit (now JVT).  We had one patient with a documented AVM
and abnormal flow in the ipsilateral ICA. This was before we could image the
carotid arteries, and we did not diagnosis it, but the abnormal flow we found
lead to the correct diagnostic procedure.  I suggested in that article that
we needed to establish a registry of unusual cases.  Congenital AVM's might
be a good subject for that database.

The capability to do this is greater now than then.  The issues are just as
critical to all of us as to our patients, more so, since there expectations
are higher now?

What do we do?  Who can help?  Who will?  Good question.

Peace and understanding.

Bill