9 yr old son just diagnosed with AVM

Support Parents and Care Givers of AVM Patients
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Hi everyone, new user here. My 9 year old son just got diagnosed with AVM over the weekend. Doctors say we are lucky that he came in with with it unruptured. It is 5 cm. They said surgery is not an emergency but they do want us to start planning it.

They found it as my son started having seizures over the weekend for the first time. CT scan and everything else was clean, but the MRI showed the AVM in his frontal left side of his brain.

We initially thought that surgery would entail embolization. That’s it. Then, neurosurgeon came over and he mentioned embolozation in preparation for surgery.

That’s when it became really scary for us. He’s 9 years old, he’s our baby. The seizure is what led us to finding AVM, he is now on medications to prevent any future episodes.

We wanted to reach out to those that have gone through AVM and seek support. Should we run and have our son go through this surgery? What would trigger a rupture? Are there any non-invasive treatment options?

Thank you everyone in advance.

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Hello,

I’m so sorry this has happened to your son. I know it’s scary for you all.

If this helps, our daughter (then 11) was diagnosed just over 2 years ago after suffering a bleed on the brain.

After a 6 month wait for things to settle in her brain and for us to discuss options, she had an embolization followed by surgery. The embolisation was to make the surgery safer. Our other option would have been gamma knife, a good option which is non-invasive, however it can take a couple of years to have an effect. For us, the wait wasn’t worth the risk as her AVM could have bled again at any time. The chances of this happening were pretty low, however after discussing it with her neurosurgeon we all came to the conclusion that surgery was her best option. This was our daughter’s preference.

I’m pretty sure your neurosurgeon will guide you to make the right decision for your son.

Our daughter is now 13 and had the surgery in April 2022. She was back at school by the Autumn and is doing all the things a 13 year old should be doing…and she’s happy.

I hope this helps!

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Hello!
I’m so sorry you are dealing with this. It is so scary. I am a mom whose daughter was diagnosed with a spinal avm just below her brain when she had her first hemorrhage at age 27. We found Stanford Medicine, and they have been able to treat her avm with radiation when all others said it was inoperable. I would highly recommend them as a second opinion……see what they have to say. I could not recommend them more as experts in this realm.

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Thank you for sharing your daughter’s story. How was recovery from surgery? How was she after embolizations?

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Jo,

Welcome to AVM survivors! It’s great you found us, though always imperfect that anyone should come looking.

You’ve got some good replies so far. What I think I’d add at this point is to underline what @Naomi said: your neurosurgeon will guide you into what are the potential options for your son. It is important to have the input of a neurosurgery practice that is familiar with AVMs and the US has world-leading practices. Most of those major practices have a remote second opinion program, so you can submit the reports, scans etc and gain a second opinion on the route that (for example Stanford, Barrow or Mayo) would take for a few hundred $.

We all understand the desire to go for something less invasive but it is much better to be guided by the professionals. Each treatment mode will have its risks and benefits but some modes are not suitable for the particular AVM that your son has, so you do need that guidance.

Like the docs have said so far, while this is a very frightening condition to have, it does not mean you need to rush out and have an operation without that consideration of options and I think also that rationalisation that change is needed. It’s a big shock and I hope, as much as anything, we can help you through the shock.

For the record, I had a much smaller AVM on the outer reaches of my occipital lobe and had just an embolisation. It was, as far as I’m concerned, a perfect way to have brain surgery: it seems, on the face of it to be very minimal. I was in and out of hospital very quickly and back to work in 3 weeks but it took many months for me to feel “normal”.

Where an embolisation is done in anticipation of a craniotomy, I think both the embolisation(s) and the open surgery are often undertaken within days of each other. However, initial recovery from surgery can be very prompt – again just days – it just depends on how well things go. The purpose of the embolisation stage is to reduce bleeding during surgery and improve the overall outcome.

Welcome! It’s really difficult being a parent. Please feel free to ask us anything you want.

Best wishes,

Richard

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Gosh this takes me back to 1990 when my 9 year old daughter collapsed whilst in church practising for school nativity…it was found she had an AVM but they then found it was not operable due to its location. In those days embolization wasn’t a thing.i forgot to mention part of the AVM had ruptured leaving her susceptible to a further bleed .She was left paralysed down one side but they said due to her age they were optimistic she would recover the use of her left side. We were given 3 choices …to do nothing and prey it would never rupture again, operate knowing at best she would be left brain damaged or at worst die or try a new procedure of stereotactic radiosurgery at the Royal Hallamshire Hospital Sheffield under the British pioneer Dr Forster .We opted eventually for the SRS but had to wait nearly 12 months with a risk of the AVM rupturing in the meantime. Today she is a mother of a 16year old son and has recovered 95% the use of her left side so hardly noticeable. Today the techniques are far more advanced and I am sure your son will be well taken care of but I know that awful feeling you are experiencing right now. It’s just terrifying and why my child? and nothing we say will stop you from having those feelings BUT I can truly say we as parents tend to see things from a negative point and can see no positives. I am pleased to see your son is able to have embolization and an operation and am sure he will be fine. Wishing you and your son all the best for the future. Julie.

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The embolisation and surgery were done together. Well, she had the embolisation , then a day to rest, then the surgery.

To be honest, our daughter recovered really well. She had a bit of an odd reaction to the embolization. Her brain was adjusting to the change of blood flow. Surgery recovery was good. She slept loads, as you would expect.

She gradually went back to school. She would occasionally get small episodes of visual disturbances & headaches followed by extreme tiredness. I think the tiredness is normal after such an intense procedure. Her AVM was near to the part of the brain that controls vision so that’s why she had the visual disturbances. The episodes are much less frequent now and they are much shorter.

We encourage our daughter to get enough sleep and drink lots of water - good advice for any teenager!

We had an excellent relationship with her neurosurgeon and this really helped. We all trusted him. Our daughter could ask him anything. I think the relationship with your consultant/neurosurgeon is so important - you have to feel comfortable.

Hope this helps. I know this all must be overwhelming and scary. It’s good for you to know there are others out there who are, and have been, going through this.

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Welcome! I had a bleed in 2016 at 48 years old. At the time my daughter was 12 and my son 10. I recall very clearly seeing them and thinking how lucky we were that it was me with the AVM and not either of them. As a parent I can only imagine the impact upon you, so it is great you found us. The experience here is significant and the input so far is awesome from carers who have been through similar.

I had gamma knife, due to the location being difficult to access. I am also a huge fan of second opinions, and you are fairly close to some of the best, UCLA and Barrows. Mayo will also provide an opinion based on available scans. AS Richard has said.

The decision on route to take is challenging, and the secret is to be at peace with the decision. In my case I had complete trust in my Neurosurgeon and it made it much easier, but also knowing nothing to do with the brain is 100%. My Gamma was successful, AVM obliterated but this January over 6 years later I had a seizure. I am now on Keppra. They think it is probably due to some scarring from either the bleed or Gamma, but not certain.

It is great that no bleed has occurred and you have some time to explore opinions and options. It is also great that there is some options to consider, all positive given the circumstances. We are here for you, and for your son. Take Care, John.

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My son was diagnosed with a left frontal AVM when he was twelve. It was discovered by an MRI after a seizure. We were told that it was highly likely that he would suffer a stroke in the next fifteen years and that any day was as likely as any other.

We got many second opinions, all of which were different. Some said do nothing, others said radiosurgery and finally one recommended brain surgery with embolization. We chose to fly to Phoenix for surgery with Dr. Lawton (Barrow). Fyi - he has written a medical textbook on AVM’s which has lots of information you may find valuable.

My son had the surgery ten months after discovery. He was thirteen at the time. He was unable to speak for three weeks and missed six weeks of school. After five months of speech therapy, two new puppies, lots of ice cream and video games, he was pretty much back to normal. He had straight A’s in school before the surgery and he has straight A’s now. He lost fifteen pounds in the hospital, but gained it back and more during the following six months. He was always a great athlete and is back in great shape now.

We had many blessings along the way and somehow it all worked out. We are still traumatized, but my son is now considered completely cured and fully recovered.

I thoroughly recommend the second opinion program at Barrow Neurological Institute. You send all of your scans and a small fee and hear back from them in a few days with their recommendation. If you choose surgery, go with the surgeon who has done hundreds or thousands of AVM surgeries. In my opinion, your outcome will be directly related to how much relevant experience the surgeon has.

My heart goes out to you and everyone on this forum. This is scary stuff. Blessings to you all.

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Hello. I’m sorry you are here for all the same reasons we are. Its a club none of us ever wanted to join, but its the most supportive club ive found and one that go me.through my darkest days last year when my 9 year old daughters right frontal lobe AVM ruptured and she had to have life saving surgery. We didnt sadly know about the AVM.until it ruptured. Sadly i dont know what causes ruptures. Ive heard its alot to do with raised blood pressure or poor diet. My daughter had neither. She had embolizatiom straight before her craniotomy. The embolization makes it much safer for the neurosurgeon to clip and remove the AVM. My daughter made a full recovery. She had a hair band scar from ear to ear but her hair grew back and no one would ever know what shes been through unless they were told.

I can imagine knowing in advance of surgery is terrifying for you as parents. I will be honest, i didnt have time to think about it with it being an emergency situation.

The good news is they were able to remove the AVM completely. She will have a mri 3 years post rupture and another angiogram 5 years post rupture but dont expect it to grow.back.

These surgeons do remarkably work these days.

Here if you need to ask anything or just need moral.support from someone who has been through it.

My daughter, Millie is now 11 and started high school in september and is doing great.

Sarah x

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I’m so sorry to hear about your son & as a father of a 9 year old son also I can only imagine the shock & horror of this ordeal… please get a few opinions in this case & then determine what is best for you guys as a family!

They say AVM’s are present from birth & mine wasn’t discovered until I was 30 by pure accident, however I had a bleed 1 month later that resulted in surgery to remove it… it was a traumatic experience but I got through it like so many others & live AVM free today with no regrets.

They say stress & anything strenuous could cause a bleed, but if you’re born with them consider I played so many full contact sports & even did martial arts that never caused me any issues in all my years… maybe I was lucky, I don’t know, but I would be mindful of his AVM & seek medical advice.

Please keep strong & keep us posted on his journey… we are here for you if you have any questions… the decision is never easy in these cases but you need to feel comfortable in how you address this matter… God bless!

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Thank you. We are much calmer now. It’s been 3 weeks since the discovery of the AVM. As a parent I just couldn’t imagine my hold having a brain surgery. But this week we spoke with the neurosurgeon and today im speaking with neurology. We’ve been assured that embolization would be needed, 2-3 sessions, uuthose are overnight stays. Then surgery to remove. Neurosurgeon says that the AVM is in a clean position, and not near the area of the brain we’re mobility or speech are. That alone was assuring. Because there is no bleed, they are not rushing us to do surgery, we get to plan it out.

At this point, we haven’t told our son any details of what the procedure would be, let alone that they want to cut open his skull. I don’t want to put that type of stress on him.

Neuro also mentioned that he does not recommend radiation as a form of treatment with kids. That could have long term effects on his growing body. He also told us that there isn’t really anything our son could do to make the AVM rupture, that it’s really “bad luck” if it does.

Thank you for your comforting words and your words from experience everyone. This week I felt like we are going back to a little normalcy and not walking on eggshells not knowing if and what could trigger the AVM to rupture.

I’ll keep you posted on this journey ahead of us.

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Hey, given surgery is an option, I suggest getting the AVM out ASAP. There’s roughly a 4% chance it will bleed each year. Given your kid’s age, the odds that it will never bleed are extremely low. I can explain the math in more detail for you if desired, but to figure the odds of not having a bleed in a given number of years you multiply the odds of not having a bleed in one year (.96) as many times as your chosen horizon. Thus, if he is nine, the odds of not having a bleed by the time he is 21 are 61% (odds of at least one bleed are 39%). By age 30, the odds of not having a bleed are 42% (likelihood of at least one bleed are 58%), by age 45 the likelihood of being safe drops to 23%.

Hopefully your doctors have already explained this to you. Seems like your kid’s AVM is in a non-eloquent place, so side effects of surgery would be minimal. The consequences of a bleed are not minimal. Also - if you haven’t been told this - avoid anything that can thin blood. Advil is an example, also Omega 3 supplements. Again, your doctors probably already told you this. If not - blood thinners do not increase the risk of a bleed, but they make the consequences of a bleed worse.

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This is difficult for any of us to say with certainty and certainly for a non-medical person to say, so I just want to caveat what you’re saying by recognising the desire to say surgery is a way forwards that worked for you or your family. It is that sober, careful understanding of risks and benefits set out by our doctor’s assessment of our situation in “do X” versus “do Y” versus “do nothing” that we all have to listen to and decide.

It is important we don’t give what might appear to be medical advice on here as patients not practitioners.

I completely support your experience and the general statistics you quote. However, I’m keen none of us encourage @jo353 into surgery, her find it was not wholly straightforward (there’s a risk of complications in any surgery) and then sue someone for giving medical advice.

:pray:t3:

Richard

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My daughter was 10 at diagnosis with a right frontal AVM, though hers was asymptomatic (and remains so). My suggestion is to seek out second, third, and even fourth opinions. Many centers with expertise will review scans you’ve already obtained and offer an opinion. Best wishes in your journey, you’re among friends.

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I don’t have any children of my own but I can only imagine how terrifying this must be, especially with a child so young. I really believe he will do great. Kids are very tough and resilient. My heart goes out to you guys. Best of wishes. :heart:

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Hi,

I hope this reply will help ease a little of the worry for you.

I suffered a ruptured AVM in 1976 (!) when I was 7 years old, I had an emergency crainiotomy and the AVM was clipped and left in place. I am now 55.

I remember the severe headache and a few things from being in hospital but I had no realisation of the risk at the time. The operation was successful and there was no ongoing neurological impact at all, I was even back at school without missing a day - somehow I timed it so badly that it was all during my summer holidays :wink:

Of course my parents were aware of some potential scary outcomes and it was a terrible time for my family but all was fine - and this was nearly 50 years ago!

Last year, I had a further haemorrhage, as a further AVM had grown from the original as I became an adult (had probably been there a long time). I was told that this can happen in some cases and is something they would scan for nowadays when a child is over 18 - just wasn’t an option when I was that age.

I had elective surgery in Sept 2024, and am now recovering from my 2nd craniotomy. This time I had the experience as a parent to two 9 year olds. They were worried and asked if the surgery was 100% safe, I avoided that answer a little by telling them I would ask that question in my pre-op. Obviously, no medical professional can say any operation is 100% safe but the answer I got was almost as comforting: “we do a lot of crainotomies, they are a routine operation in neurosurgery” and I relayed that to the kids which provided some reassurance to them and also meant I did not promise something I could not guarantee.

I would not be worried about a crainiotomy versus embolisation or gamma knife, although it seems a lot more intrusive, it is a well practiced operation and it is an immediate and permanent solution.

Just as it was for my parents previously, it was far worse for my wife and siblings this time around than it was for me. Waiting for news on the surgery outcome is awful - even if a crainiotomy these days is pretty low risk.

I hope everything goes welll, and your son recovers quickly.

One difference between the two surgeries is that the new AVM growth this time was clipped and entirely removed, whereas my original AVM was just clipped and left in place. I don’t know but suspect the removal is a better option today.

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Thank you for sharing your experiences.

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Hi. So sorry to hear your story but we can totally understand your feelings. My son is 9 years old and he was diagnosed with AVM just in August, 2024.

On August 12, he kept vomitting at school and we called an ambulance. At first, we had no clues what happened to him but he complained about having a headache and the vomitting wouldn’t stop after few hours when we were in ER. The EM doctor gave him a CT and they thought he might have a tumor in the cerebellum.

Then he had more tests and ended up in PICU that same day. The test showed that he had a rupture and a surgery EVD was performed to release water in his brain. He then stayed in the picu for 2 weeks. After he was more stable, he had another surgery to place a VP shunt in his body.

That was the darkest and scariest two weeks in our life caz we didn’t know what would happen to him. Luckily, after two weeks he was transferred to a regular ward.

The AVM he has is diffuse reticular typed AVM in the cerebellum. The bad news was that it is all over the cerebellum and near the brain stem. That means it’s not operatable. We can’t let him have a craniotomy or embolization. As for cyber knife or gamma knife, the doctors said these were way too risky. So we can’t really do anything. All we can do is wait and observe his condition.

He had a seizure only once when he was in the standard ward on the second day. So he has been on Keppra ever since to avoid any future seizures. Fortunately, he can talk, walk and function well except his balance is influenced a little.

In September, we brought him back home and he got back to usual life. He has been back in school for almost two months.

We know there is a 2 percent chance he is going to have a rupture but there is nothing the doctors can do about it. So we will keep regular hospital visits in the future and hope there’s new tech that can help him. Now we are living our lives to the fullest.

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Sorry to hear about your child & sending prayers to you & the family… God bless!

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