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Comment by Dionne on February 1, 2013 at 5:09pm

Hello Eileen. Yes Dr.Kumpe is a very knowledgable and wonderful doctor. He is an Interventional Radiologist and Vascular Radiologist in Aurora,CO... Great guy. At this point, we aren't sure which plan to take....

Moderator Comment by eileen on January 28, 2013 at 10:18am

Wow! I am very impressed with this doctor's detailed description and advice. this is not at all my area of expertise; but this doctor knows his stuff and knows how to communicate with parents. I don't know him at all; this is just my impression. I assume he is from a facility that has large practice in this field. You may very well have reasons to not go with his plan; I don't pretend to know @ that. But his detailed note is impressive.

Comment by Dionne on January 23, 2013 at 6:36pm

Hello Dancermom. How are you and your son doing? Dr.Kumpe went over both location and reercussions with use of the coil. Here is a part of one of our emails. "...to use coils, which should not have any probability of disturbing arterial supply away from the point where the coils are deployed.Jaxson has a fistula (direct connection between artery and vein) in the low right neck outside the spinal canal, probably supplied by either the thyro- or costocervical trunk, which has venous drainage beginning outside the spinal canal which then drains into veins the spinal canal surrounding the spinal cord. He does not have a spinal AVM......"

He did say it isn't a spinal avm and he also believes it to be a avf. One thing that confuses me is that it drains into the veins surrounding the spinal cord. What are your thoughts?

Moderator Comment by dancermom on January 23, 2013 at 1:02pm

Here is some reading, Dionne: http://www.avmsurvivors.org/main/search/search?q=coils
The success/failure of coils in a different type of AVM (brain/facial/etc.) won't necessarily predict what will happen in this case.

Did you get more specific information about the location of the AVF? Is it in muscle, bone, etc.? Has Dr. Kumpe addressed the issue of possible recanalization (AVM progessing around the coil)?