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 .
Hi Mary,
Itâs been 9 months since we last shared updates. I was wondering how your son is doing now. My son is attending school but I let him start school an hour late almost every day. Sometimes he felt dizzy in the morning if he didnât sleep well the previous night or we took a trip the day before.
We start to find his patterns and try to reduce his uncomfort as possible as we can. Sometimes, itâs very hard for him to know his limit and he also didnât tell us that he felt dizzy sometimes. The scary thing happend just in April when he started vomitting again at school. We took him to the ER and my son had an MRI and other tests. Luckily this time he didnât have a rupture and his vomitting stopped. So he was sent home that day. We were relieved that his VP shunt might have helped him reduce his intracranial pressure. We could only guess that his tiredness triggered his increased intracranial pressure becuase we just had a 3-day trip before that incident occured. The doctor couldnât tell us what trigger that either. So we are learning along the way and hopefully scary moments like this will happen less and less.
The other issue is that his AVM might have influenced his brain caz he was diagnosed with ADHD. He also has some emotion issues and behavioral problems as well. Sometimes he couldnât control his temper. It seems itâs hard for him to control himself as well. Some days, he is quite okay but other days he has to cope with his personal issues. We are helping him deal with that. I was wondering whether your child has attention or emotion problems if you donât mind my asking.
Angela
I hope you and your son are well.
So glad to hear the episode in April wasnt another bleed. Was the vomiting down to the vertigo?
My son is doing great at moment thankfully.
He had some side effects to SRS in December so about 7 weeks post treatment. Some vomiting and mainly vertigo. ED didnât feel the need to scan him. He was prescribed steriods for 2 weeks and they seemed to do the trick.
He is back playing contact sports since January and is so happy to be back to it.
Emotion wise he can be moody and argumentative sometimes but im not sure if thats teenage years or AVM!
Otherwise heâs doing great.
We have clinic with Neurosurgeon this week to discuss 6 months post treatment MRI he had last week. I will update on here as have been meaning to for a while.
So did your son still not have any treatment in the last 9 months apart from shunt?
Have you thought anymore about treatment options?
I look forward to your reply.
M
Hi Mary,
We are doing well thanks. Actually, there was one vomiting in Februray. It was again after a 10 day trip abroad and a 3 day trip shortly after. He didnât feel uncomfortable, still energetic, but on the last day, he felt dizzy. He said he felt like vomitting and around 30 mins he vomitted few times and he felt better. That time wasnât that scary. We suspected it was due to something he ate because he said he had a stomache but at the same time he felt dizzy that morning.
In April, we believe it was due to vertigo but again, it was after a trip. That time, his vomitting wouldnât stop in the whole morning, so we were worried caz it was like his first rupture, so similar. He was sent to the ER and the doc gave him some medicine to reduce the intracranial pressure, and the vomitting stopped in the afternoon.
From time to time, when he gets up in the morning, he complains about dizzniess or headache. We will let him rest a while and see if it improves. If he feels better, then the whole day goes smoothly.
Therefore, we think he needs to have enough rest. He always feels excited when we took him out so I guess itâs different from his daily routine and he didnât have enough sleep. My son doesnât like to sleep too much but he needs the sleep.
Apart from VP shunt, he has been on Keppra for 9 months because he had a seizure after he had his first rupture. But no, he still canât have any other treatments so we just go back to the doctor periodically for MRI, CT or other necessary tests. We are still waiting for the suitable time or new technology.
Sounds like hes been having a tough time of it poor thing. So scary to have been vomiting for that long in April. Such a relief that it wasnât another rupture. The vertigo is awful.
Do you mind me asking if your flew by plane for your trips? Were hopefully heading on first trip abroad since AVM rupture/diagnosis in a few weeks. It will be around 3 hour flight. Iâm very nervous about it but doctors said he can fly no problem.
Hi Mary,
Vertigo is awful but itâs also a sign to remind me of him feeling unwell. If he tells us, we will definitely let him take a rest. If he is not his usual self, we will take him to the hospital.
We had waited for 5 months until we flew abroad for our long trip. We were worried about the same thing as you did. So we consulted the doctors first and see if itâs safe for us to do that. Some doctors said they were not sure, others said it was safe. One doctor mentioned if something happended, the VP shunt could help save his life but if anything unusual happened, just send him to ER. The doctor believed air travel is rather safe.
Luckily, my son didnât feel any uncomfort on the 3-hour flight there and around 4-hour flight back. The other trips took, including car, coach, bus, train, high speed rail etc, were all fine. We just need to make sure our trip is relaxing. We donât get up too early or come back to the hotel too late.