My question is regarding brain avm’s, and how they present. Our daughters doctor’s are thinking (very strongly) that she may have an AVM in her brain now as well, and we are being sent for a brain MRI (not until December 1). My question is…do those with brain avm’s have any visiable signs on the outside that indicate an AVM underneath?
As we have now recently noticed (as my daughter is just starting to sit up) that on the back of her head, where her neck connects with her head - there is a bump there…and on the skin its a lot of red dots, similar to the large port wine stain on her thigh…but much smaller and multiple dots all around the area of this bump.
I’m so sorry to hear about your daughter and certainly can understand your concern :(((!!! I just discovered I had a brain AVM back in FEB and had not one visible sign for 46 years. I hope and pray for many blessings for your daughter and you.
Michele so sorry to hear about your AVM. I too was unaware of 2 cranial AVMs which I have, until they presented themselves with sudden severe pain in July of 2009. Unfortunately I didn’t seek treatment for 5 days, and the doctors were unaware if it had bleed or not.
I am a 44 year old married male with 2 small children. My wife and I have done considerable research on AVMs,their effects, and possible treatments. The first two doctors we spoke with informed us that one AVM splitting my left frontal, and temporal lobes scored a 5 no the Spetzler/Martin scale, and thus inoperable.
They could do nothing for me. Our search continued until a neurosurgeon at OHSU believed he could remove them. After a second angigram, he decided that it was too risky, and we were referred to radiology to Gamma knife. More later we have another doctors appointment to go to.
Thanks, and wishing all the best to you and yours.
Michelle and Jeff
Some people do have symptoms, but some do not. I had an avm in June, and I had no symptoms. Nobody would have ever known about it, but it bled, and I missed my whole summer before starting high school. I hope you’re daughter is okay. You’re blessed to have found it this early. I’ll be praying for you.
I have a cerebral AVM. It wasn’t diagnosed until this past April (I am 43). My only symptoms have been headaches–increasing in intensity & frequency as I’ve gotten older. I don’t have anything visible. I was adopted at a month old & my mom tried to scrub my birthmark off my foot because I was very filthy & she thought the birthmark was more dirt (It is a cluster of light brown freckles on top of my left foot.) I’m sure she would have noticed anything on my head that was out of the ordinary.