My 7 daughter had a cerebellar AVM that was discovered when it bled on 6-2-11 (she was 6 at the time).
She had a craniotomy to remove the 2 cm AVM on 6-29-11.
She had a post craniotomy angiogram perioperatively which showed they got the whole thing!
She had her first MRI follow up last week- I just got the call that the MRI looked great.
Next step- angiogram for 1 year follow up.
Here are my questions:
1.Should I get an HHT test for my daughter- she has a history of nose bleeds as does her sister- never uncontrollable, but definitely a real thing. Her older sister also got even more nose bleeds- enough to take her to an ENT- she had prominent blood vesssels to explain them....I know that HHT is more often associated with lung AVM, but any one with brain AVMs know about this.
2. Also- trying to figure out if I should have my older daughter aged 9 (once I am done with the one year follow up ...) get an MRI of the brain as well. I understand as a clinician myself that sometimes when you do imaging that you can find things that may or may not be significant that you weren't looking for ... and then you go on a wild goose chase with all the associated panic...I would not risk putting her through sedation, but if she could do it without sedation I am just not sure. The risk of her having an AVM is incredibly small, but if she did and had a bleed I would never forgive myself...but if we went on one of those wild goose chases and I put her unduly through hell I would never forgive myself in a different way.
ONe thought I had was to get the HHT blood test on my 7 year old and if that was truly truly negative than the risk of my older one having an AVM would be even less....
ideas...thoughts.....my head is spinning a bit.
Thank you in advance for taking the time to help me.