Hi everyone! My son, Ashton has 4 large AVM's deep within the brain. He has a lot of visible drainage veins on his face. His Vascular specialist said that he is his only patient with these and that is is rare. Just wondering if anyone else has anything like this. I feel bad for him because it really makes him look different and other children often inquire. He's as cute as a button and a huge blessing. I just feel bad for him and hate that other children say things when he has already been through so much in his life.
Hi Betsy,
I have them on the outside of my nose (left nostril) and for years thought that it was the fact that I had a birthmark on my nose, covered the whole of my nose but has faded as I’ve got older (I’m 41), and it was pointed out to me at my meeting with the ophthalmologist (I have an eye problem) that there were veins on my nose, in my naivety I said that it was because of my birthmark and I need cosmetic laser surgery to fix it, no, I was told, it’s part of the AVM. I was gobsmacked.
I get a lot of people, kids and adults alike looking and people often say I have ink on my nose because they are black/purplish and are more pronounced on some days more than others. Of course children are very naive about differences in other children, but as Ashton gets older, with your marvellous support, he’ll learn to deal with kids and adults alike.
Yes, he is an absolute cutey and such a blessing, I have a 6-year-old boy and treasure him every day.
my son got the same. When he was 18 he wanted to treat it. He had laser treatment 3X. Just last month the MRI is suggesting large veins in his brain. His MRI, when he was 13 was normal. Now they are suspecting AVM in the mid-brain. I am very worried.
Hi Betsy, My son got a very similar vein on the mid-line of the forehead like your son.
He got a plastic surgery on it 3 years ago. It was a laser surgery.
The doctor said that was a mistake. But his MRI was normal at age 13 and we thought the vein is only outside. Now it is showing it goes inside his skull, next to his nose.
I don't have pictures, because we always airbrushed his pictures, that it won't show. The reason he wanted the laser surgery because he was always bullied at school, even from some teachers.
We are not sure about the AVMs yet, the recent MRI suspected one, seeing another neurosurgeon on Wednesday.
Hi Betsy. I'm new to this site. My son, Connor, 5, has multiple avm's in the dura. He has undergone 15 embolizations within the last year and a half and he is doing ok. He does have some drainage veins on the front of his face and the side. Only 1 is really noticable. The others are noticable only when he's laying down and they are bulging. He has a terrible time sleeping and the neuro said that it's because his veins can't drain properly when laying down. We try to prop him up, but he always slides down.
Hi, I have a similar issue, not as severe though. I have lots of redness which covers my entire nose and its actually formed a bump on the top and along the sides of my nose. I also have a massive scar on the right side due to a previous surgery where I ended up having an infection. I know personally what your son is going through and I can say it wasn't easy. As kids, they inquire, as they get older kids tend to get meaner. But this is where you can make a huge difference in his life. Make sure that the school knows and have a good friend with him in all of his classes. My best friend helped get me through my middle school years and when I was younger too. Be a pillar of strength. Allow him to feel bad, but then tell him about all the wonderful things he is too. Always try to find ways to boost his confidence and help him understand that he isn't all that different regardless of what people say. I had it rough because my nose is so disfigured, but I had help and I am thankful for it. I am now 27, still disfigured, engaged to a wonderful man, currently a middle school teacher!, and thrilled with my life at the moment. If I had the chance to look like everyone else I would take it in a heartbeat, but that doesn't mean I am not a happy person. Through the strength of my friends and my family..them constantly being by my side, I can say that I am quite happy to be where I am and he will be too.
He is 7 now and his veins appear to slowly be getting worse and yes others do say stuff about them but it does not bother him yet. He is in a general education school but does have an aid with him all day which I am thankful for so she is able to address any issues that arise. Fortunately, we have an amazing support system and he has lots of "friends" that go to his school. Each year they are very proactive by sending a note home to the parents of students in his class, I speak to the parents at back to school night and they are encouraged to discuss Ashton with them and answer any questions. Once the initial "he is different" passes they are all really good with him!! I am sooo glad that you are doing so well and we try our best to encourage him always and focus on his strengths. Thank you for your input!!!