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