Im so sorry to hear of your sons AVM diagnosis.
My 13 year old son was diagnosed with AVM in his cerebellum this year also.
He had a bleed in March 2024. He become unwell after playing football, headaches, vomiting and dizziness. Symptoms had been there for few weeks definitely but not as bad as that day . He was in hospital for a week. He has been very well since with no symptoms.
Neurosurgeon felt AVM needed to be treated as his lifetime risk of a rebleed get higher the older he gets.
Surgery is also too risky as it is near brainstem also. Soundâs very similar to your son.
He had SRS treatment ,similar to gamaknife almost 3 weeks ago now. It was very straightforward procedure and no side effects so far. Now we wait for obliteration. It may take up to 3 years but so long as he is well in the meantime thatâs all we can hope for.
He is hoping to get back playing sports but we wonât know for few weeks yet after follow up appointment.
I was like you at first so nervous for him to be left alone but as you can imagine a teenage boy doesnt want his mum everywhere with him! He just lives a pretty normal life now apart from no contact sports. Weâve been keeping an extra eye on him since procedure but all is good so far.
Message me anytime if you want to chat.
Best wishes
Mary
Hi Mary,
Iâm sorry to hear that your son was diagnosed with an AVM in his cerebellum. You must have been terrified and frightened just like we were first notified of our sonâs AVM. My son is back to school after his first rupture and things have been pretty normal now even though we know he might face a second rupture but no one can tell us when. We were advised to simply keep an eye on him. So we are doing it now.
I am glad to hear your son had no side effects after he received SRS treatment. When our son was at the hospital,we were first told that his coniditon might be able to receive SRS treatment because the other two methods, craniotomy and emolization, were simply too risky for him.
Unfortunately, with more evaluation and discussion with the doctors, we were advised not to try any intrusive treatments because he is still too young, 9 years old. One neruosurgeon said we should wait at least 4 or 5 years when he is reaching puberty which is just like your sonâs age.
Hearing that, we then had some ideas about whatâs not workable but we still went to a different doctor at a different medical center for second opinion. The doctor we saw is also very experienced and has been dealing with more than 1000 cases of AVM, simply told us to wait. He said our sonâs AVM is too large, is all over the place and near the brain stem so he thinks the best way is to simply let it be now. He looked at the angiogram of my sonâs AVM and told us even though my sonâs AVM is diffuse, he thought it can function well so he told us to have regular hospital visits to monitor it.
Thanks for sharing your sonâs story with us. I am grateful for that.
It is terrifying living with the risk of another bleed but as you said nobody can tell us when it may happen again so we just have to keep going and count our blessings every day.
It is amazing how resiliant kids are and how they can adapt and cope with stuff that seems so scary to us.
You just have to trust the doctors that waiting for a few years is the best option. Also your son will be older and able to understand better and decide which treatment route he would prefer.
I hope your are all doing as good as you can be.
I wish you and your son all the best .