We had our third opinion recently with Dr.Edwards of Stanford and he said Jaxson is growing well and the AVF doesn't present any symptoms. Therefore the time frame for any diagnostic testing has been lax because he is to be doing well i.e growing, motor skills developing etc... Two AVM specialists say to wait until he is older (1 1/2 to 3yrs old) to do any invasive diagnostic testing (angiogram) because of the amount of radiation could be damaging to him. The doctor which we had recently seen (Dr.Edwards) consulted with Dr.Dodd? and Dr.Dodd says to get a "high tech MRI" and also thee angiogram next week! The Dad and I both feel we should wait until Jaxson is older because of what the other doctors (Dr.Spetzler and Dr.Kumpe) said. Any advice for us?
Hi Dionne,
My daughter (now almost 13) was also treated by Dr. Edwards and Dr. Dodd almost 2 years ago. They are both very conservative and wouldn't recommend anything that would hurt your child. If they feel it is in his best interest to do some diagnostics testing now, I'd go with their recommendation. I don't know the other Drs. but my experience with the 2 of them was nothing but positive. I would talk to both Dr. Edwards and Dr. Dodd and explain your concerns and see what they have to say. They are both very direct and honest and will talk to you about your concerns.
Good luck!
Laura (mom to Taylor...almost AVM free :-)
Thank you Taylor:) We left a message for both Dr.Dodd and Dr.Spetzler. We are hesitant to do the angiogram due to two different doctors saying Jaxson is too little for it. It's a tricky decision as to when to start diagnostic testing and/or procedure because there isn't any bleeds, symptoms and also that he is 10months old. I will update on what they say. I appreciate your reply especially because you've been to Dr.Dodd as I haven't consulted with him before.
At the very least I would do the MRI since there is no radiation involved and it is much less invasive than an angiogram. If you have a good interventional radiologist, (we had Dr. William Bank at Washington Hospital Center in Washington, DC. He is widely recognize as one of the best in the country), then I would proceed with the angiogram. I would want to know exactly what is going on and the best way is with an angiogram. In the end you have to do what you think is best for your little one. Best of luck.
I think 1 1/2 to 3 is reasonable if Jaxson remains asymptomatic, Dionne. It is very difficult to do an angiogram with tiny vessels, and the later you can wait for general anesthesia, the better. (See http://www.cnn.com/2012/02/02/health/anesthesia-infants-adhd , for example). You should speak to the doctor you choose about what signs to look for that might indicate a need to speed up your timetable.
My son's doctor recently said that peripheral AVFs generally respond much better to embolization than AVMs do, so that is good news for you, too.
I agree with Margo that the MRI could be helpful, or a CTA.
Hi Dancermom! That is exactly what Dr.Spetzler and Dr.Kumpe said about an angiogram. The only signs that we said to look for is bulging of veins in the head or neck and loss of mobility. I hope to hear from Dr.Dodd soon as to why he wants to do one now. When we consulted with Dr.Spetzler and his team, they had mentioned it would either be surgery or embolization by the looks of it but wouldn't know exactly until the diagnostic testing.
My daughter had her very large spinal AVM embolized successfully in two parts. Angiograms can be done on surprisingly small vessels. Like I said a very high quality MRI at the very least should be helpful to determine what the next step should be. What diagnostic test has he already had?
Thank you Margo :) I guess at Stanford they have better MR imagery than here and will probably at least want to do that soon.
Actually, this discussion raised a question for me, Dionne. How could Dr. Kumpe be so sure it was an AVF (or 2) rather than an AVM if no angiogram has been done yet?
That's awesome Margo! We only hope to have a completely successful procedure. The tests we have had done was a CTA of the chest and neck at 4weeks old and an MRI of the neck and head at 5months old.
Great question dancermom. None of the doctors are for sure but they all call it an AVF. They don't know the extent so that's why they all say they would need further testing to be certain. Barrow and Dr.Edwards said it is a para vertebral fistula.
Dionne,
Please what was the outcome? Who did you use for angiogram or surgery? We just found out my 9 year old has either and avm or avf to determine. I sent records to Dr smith in Boston, Dr Spetzler in Phoenix, Massgeneral and here at Miami Children’s. Looking at everyone’s experiences and trying to make decisions