Confused and impatient :/

Symptoms & Treatment
1

Hello everyone,

I haven't posted in quite some time as I *thought* everything was great. We were told that our son's AVM/AVF was obliterated following a single embolization using coils in July of 2010. Great news right?

Well he started to deteriorate a bit about 6 months post embo. We took him in and they immediately did a CT and EEG. The CT seemed relatively normal with just a slight bit of swelling to the left lobe which our NS thought was attributed to his increase in age (he had the Embo at 9mos of age). The EEG however came back abnormal. We were never given the info on what the abnormality was just that it was abnormal. We found out there was a new lesion showing on the EEG (this by pulling the report ourselves) as his initial EEG prior to Embo was "normal". We scheduled his MRI/MRA for July of last year. Everything as we were told was "great" nothing new to worry about. Mothers intuition kicked in and we decided to switch his care to another hospital. I just got his reports this weekend and I'm shocked and confused to see that not only is it not obliterated, the newest report says "occluded" vs "obliterated" but that there is a residual nidus with low flow that appeared on the July 2011 MRI/MRA that we were never told of. It's a bit smaller than the "original" but I guess I'm wondering if anyone has any experience with anything like this?

Our NS is in surgery all day today so we won't hear anything until tomorrow. I dropped off his CD today for them to compare the ventricular mri that was taken last week to his previous from July of last year. I'm just very anxious.

Thanks!

2

I'm so sorry you are going though this. It's very difficult for a parent to be facing another round of treatments for an AVM you thought you were done with. There was a discussion about the recurrence of brain AVMs back in January: http://www.avmsurvivors.org/forum/topics/do-they-grow-back?commentId=1543517%3AComment%3A251100 I have read enough stories of recurrence on this website to believe that recurrence is more common than most doctors know, especially in children.
You may want to join the subgroup "Parents of AVM" to talk about this: http://www.avmsurvivors.org/group/parentsofavm. Best wishes for your son's health and happiness!

3

Hi EKAZMom. I am so sorry about your young son. Unfortunately, it has happened here before. These are some links you might find interesting…
http://www.avmsurvivors.org/forum/topics/little-bit-of-avm-left-did-this-happen-to-you?commentId=1543517%3AComment%3A459103
And http://www.avmsurvivors.org/forum/topics/reoccurance-of-avm?commentId=1543517%3AComment%3A242964
You may wish to contact Tina White. Her 9 year old daughter has had 3 craniotomies done…
http://www.avmsurvivors.org/profile/TinaWhite
I will be praying for you!

4

Thank you guys so much. I appreciate the prayers and the links to find more info. I've spent the last few days scouring medical journals and this forum just looking for information. I'm hoping for a call today with news one way or another. Thanks again!

5

Ok now I'm even more confused quite honestly even angrier! I have never felt that my son received proper care, I keep reading that everyone has repeat angios to confirm obliteration etc. He NEVER had more than one angio and that was for embo. Ugh Ugh Ugh! We were never given "options" just told this has to be done now. There wasn't time for a 2nd opinion and quite honestly we were scared out of our minds that we would loose our son. Grrrr. Thanks again for the links! Very informative!

6

I know just how you feel -- I've been there, too. I hope this website will help you find the best possible doctor for your son. We are rooting for you!