Hello!! My almost 3 yr old son was just diagnosed yesterday with AVM in the brain. I don’t know anything about AVM and honestly sometimes the internet can be a scary place when looking up diagnosis. I’m hoping being in this group I can get a better understanding of what is going on, what treatments others have had if any and, well, really anything. It’s very scary to me and I really don’t know where to turn. His doctor is pushing for him to have surgery. Has anyone else had surgery and how successful do you think it is? Thank you all for your support in this matter.
Sonya,
Hi. Welcome to the site.
There are lots of people here who have had different types of surgery or intervention and of almost every age.
Tell us a little more about how it is that you’ve come to know he has an AVM: has it just been found “accidentally” as a result of a scan for something else, or is he having headaches, or what? It will help people who’ve had similar experiences share with you.
It is a very strange, unusual thing to have an AVM and “discovery” is a scary time. I hope that we can help you a little. For myself, I found discovery quite a rollercoaster but even though I’ve not had any intervention yet, I’ve calmed down about it a lot. Time can be a bit of a healer, too.
Very best wishes,
Richard
I took him to the doctor for a check up at the beginning of December because I was starting a new job and wanted to make sure his shots were caught up prior to us loosing the insurance from that job. The doctor was concerned about the size of his head. She ordered a CT scan and after receiving those results she ordered a MRI and a venogram. He had those tests on Friday and yesterday is when she called to give me the results.
Hi Sonya,
Welcome to the site, I hope you find it helpful. I certainly did, I didnt have a clue what AVM was, and youre right , it can be scary reading all the internet bumf on it. The site has really helped me understand AVM and the support is amazing! I cant really comment on your sons AVM as mine is in my lung and im still awaiting an appointment with a specialist, i too am in the early days of this journey. Talk to people on here and gain the support you need. Take care. Mandy
There are some brilliant doctors out there and you have to trust their judgement. If you feel uneasy there’s always a second opinion. I had embolization surgery with 12 coils inserted in my brain a year ago and today I have almost fully recovered. I’m an old lady - 66 years old when I had surgery. I would think your son has youth and resilience on his side. Mine went undetected for so long it bled; you don’t want to wait that long. Making a decision is the hard part; doing nothing may not be an option.
Welcome, nice to have you,. You have come to the right place : ). I was born with an AVM that wasn’t discovered till first seizure at 23, surgery at 24, I’m now 53 in March, so I can be done, your fortunate to find it early, I always had headache problems growing up, come to find out, those weren’t headaches, in my case I was told from birth I had a 2% chance a year of aneurism, so I was right about 50/50 at the time, 100% chance at 50 years old, so I opted for removal,. Not sure of your situation but we are all here for you!! Positive,good thoughts and wishes to you and your boy, be strong
Hi Sonya. I found out that I had an AVM at 14 and am 43 now. Some things may have been explained to you by now. But AVM’s are abnormalities - mainly affecting the nervous system but can be in other places. They involve arteries and veins that have fused together to create a web-like system of blood vessels. If the walls of these vessels become thin the AVM can rupture causing bleeding. In the brain, for example, this can be fairly serious. The problem is that no one knows whether theirs is going to bleed or not. Many sufferers opt for treatment. But there are members of this site who have not, usually because the thought is scary and it is also impossible to predict the outcome of treatment. I fall into the second category. I am not a candidate for surgery due to my AVM’s position and don’t have any ill effects from my AVM in everyday life. So rightly or wrongly I am going to take my chances. If one day I have a bleed I’ll deal with that at the time. Good luck to you and your son.
Hi Sonya
You are very scared, and you are like all of us at the beginning. Whether it is you or your child, there are reasons to be afraid. It is pretty rare, and many have never heard of AVM. I was 8 years old when mine was found. Now that was in 1959, and no one knew about them then except some neuro people. Mine was found because I had symptoms (headache, black spots in my vision, noise in my ear. They did brain surgery then, not knowing what they were looking for, but they knew about where the mess was. The dr found the AVM, took it out and took more brain cells because they thought it was cancer then. I am just lucky to be alive and now 66 years old. I lost vision and have never driven, but I see from the right side of my right eye, am very smart, was a paralegal for many years. How old is your child? Where in the brain is the AVM, if you know? I’d be happy to help you with anything if you need help. I can’t make the fear go away, but maybe I can help you with it.
beans
Sonya - what city are you located in? You must get a second opinion, preferably from a top research hospital that specializes in this kind of surgery. Do NOT rush into anything. You need at least two opinions based on the MRI and cerebral angiogram, if you have done that procedure.
Hi Sonya,
You have to give us more information here. No doubt the internet is scary (and you should consider not frequenting here if you want to maintain sanity) and no doubt we are not doctors, but we all have our experiences. This problem is pretty rare but in general goes undetected for years. The longer the AVM remains untreated the more likely it is to rupture over time, as AVMs are malformations of the arteries and veins, there are usually smaller arteries that transition into veins in order to make sure the pressure isn’t enough to make them burst, but with AVMs there are no small transitions. It’s why lots of people find out they have AVMs during a stroke or hemorrhage (it rupturing). Your son is very lucky to have found it at such a time (the doctor who had conducted my embolizations also works with children and has had to deal with them rupturing at such young ages :(, and like another poster says he is young. He has youth and resilience and I’m convinced should all go well he will not take long to recover from a surgery. In older people you have to worry about much longer recovery times. I was 19 when I was diagnosed, and I had resection in November. Everything went perfectly fine and I’ve gone back to college. I had a lot of headaches at first but 3 weeks later AVM recovery was mostly in the past, no doubt your son will recover faster 
But in July I started having a lot of chronic pain that couldn’t be fixed with medicines, so leading up until the final surgery I was in a lot of pain. Resection is considered the golden standard and it’s best to have that done at some point. However you haven’t mentioned where the AVM is and how deep it is, but I’m going to assume it’s on the surface or the surgeon wouldn’t have recommended resection. You would need to talk to your doctor about the options, doctors here know what they’re doing, have confidence in that. Whether it’s best to wait until he’s a couple years older and chance it or if the surgery should happen soon is a talk not with us but with a doctor and your gut! It’s definitely not a quick process like an appendectomy. Most likely the AVM will get embolized in multiple stages before it is finally resected. Embolization reduces blood flow to the AVM (which does not hurt the rest of the brain, remember an AVM is unnecessary!) which thereby reduces risk (and for me it helped reduce my headaches). Overall for me the process took half a year, from diagnosis to resection, so even if you do decide to wait, there is quite a lot of steps to even before the AVM gets resected and that can be all the time you need.
Hello, Sonya. My wife and I are in a similar situation. Our son was born with a large head and the dr recommended a CT scan. They said he was fine and did not find anything, but I had my doubts. My mother and uncle died of aneurysms so it has always been in the back of my mind. In September my 14 y/or niece died of an aneurysm and I had had enough. My wife and I took all three of our kids in for MRA brain scans and they found a 2cm AVM in my 9 yr old son’s left temporal lobe. Initially our local dr recommended radiation. My wife and I researched ALL options and settled on surgery - with a different dr out-of-state. Our son’s surgery is in less than two weeks. We are terrified, but all you can do is do your best and place your trust in God (my choice) or fate or whatever you believe in. Good luck!
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Sonya,
Thank goodness you found this site, already!
I DID get my very large AVM in my brain fixed pretty well, in 1990, by Dr. Robert Spetzler/St Joseph Hospital/Barrowlogical (sp?) Neurological Institute/Phoenix, Arizona. I bet the knowledge of how to fix these AVM, NOW, is so better than it was when I had to get it done way back when. Dr. Spetzler told me afterwords of how much he LEARNED by fixing MY AVM, because it was HUGE! Altogether, I suffered 2 strokes during 7 brain surgeries. It was a tough road to recover, but 2 things helped me immensely: Strength From WITHIN and the Spiritual Beings From Above, I feel anything IS possible. This is my gorgeous ‘2nd Life’, I always call it!!
If your son DOES get the surgery, drill it into his head that try to NEVER GIVE UP while recovering, and FIGHT, FIGHT and FIGHT. Good luck to you all, and May God Be With You!
Lisa A. Stuckel