My daughter was diagnosed initially with a Spinal AVM (C1-C2). She was 8 at the time - one year ago. We can feel it which is how we discovered it, to her she always thought this was “normal” none of the doctors had ever seen one as they said it was very rare and usually occurs (is found) in adults. In fact, it took awhile to find it…we started out at the cardiologist because her feeder goes in to her carotid. As you can imagine she had many many tests. She was scheduled for the surgery which included the removal of her skull, but they wanted the Spinal Angiogram prior to find the exact location. After a long day, they came out ecstatic because in all the imaging (many many MRI’s, New Top of the line imagining and Cat Scans) they now realized it was just a hair outside the Dura and they now were calling it a Spinal AVF. At this point, my daughter who is a tremendous dancer and tumbler had been on full restriction at dance, school…everything for their fear of the hemorrhage was able to go back to everything and surgery was no longer needed, that we would just watch for symptoms and have a yearly test to watch for growth. They wanted one a few months later to check-up and yearly thereafter. That image was April/May and she checked out just fine. They are hoping to do more of the embolization later down the road but want to get as far as they can because it is so rare to find them in a child and the area in the space to work is so small…the longer they can get her the more growth in that area to work and they stated technology always gets better (glue , coils…)
Now the past few weeks I am a little nervous…she has stated she feels her “neck” where the feeder runs the most so you can feel a bruit is getting bigger to her and she can hear it more and she says her heart is “popping” and several times a day she gets pain or such (again like popping) in her arm (not her left the side of her bruit thank goodness) and her back as well. Has anyone had something similar to this or had a child diagnosed? It is so hard to have them go through this and not panic. We have done very well and I do not worry much, but this makes me a little concerned…
She has two neorosurgeons (a pediatric and one who can from Barrow - we are with University Hospital in Ohio - her neurosurgeon from Barrow is also a radiologist) whom I have called and waiting to hear back to see their thoughts and if we need to do anything, but just curious if anyone else has dealt with this like us? Also, her carotid they said was not a concern now but already beating at roughly 125 in that area only due to the situation (when we first started seeing the cardiologist before finding the diagnosis) and it should be 100 or less…
Also, I know at times she does get concerned or scared…she is 9 now and will turn 10 next month…she has been very brave through everything (all of her tests require general anesthesia as well because they always run at least an hour) - if anyone has had this with a child…any ideas to help her as she continues?
My son who is 18 now has a spinal avm T-11 to L-4. We found it when it ruptured. I understand how you feel. He was 12 and played football and all that stopped! He has problems no one can explain like hot flashes migraines and he also has partial paralysis in is right leg from it. He is in constant pain. They went in his spinal cord and corterize some of the bad areas, and over the last couple of years he had angiograms where they coiled other areas. He is on disability. I can try to answer any questions you have! He doesn’t complain about heart popping but has had issues with it racing and dr told me it is working overtime because of the avm. It does not happen a lot but enough to scare me. We have a vein specialist now who deals with him, now that he is an adult.
Learning relaxation techniques and then the addition of anti-anxiety medication has helped my 8yo son deal with his condition when his anxiety made him feel sick all the time. Praying for your little one.