One year on after the stroke and the inevitable crainiotomy

Don’t know what to say really. My darling son Tom was diagnosed as having an AVM in the front lobe left hand side of his brain in 2006. This diagnosis followed many years of Tom struggling with headaches and being treated for childhood migraine. He developed a really nasty headache in November 2005 following a viral infection which never went away… He was sent back to see a peadatrician who ordered a brain scan which revealed the AVM. He was then seen by his surgeon who planned an embolisation of the AVM in July 2007 but the AVM couldn’t wait and it burst June 13th 2007 causing a huge brain heamorrhage. After a week in a coma he had a craniotomy and a total resection of the AVM and clearance of the heamatoma. We are now one year on and Tom is doing incredibly well. We are still traumatised by the whole experience…We are told this is really unusual, the chances of an AVM causing headaches and then bleeding is supposedly rare but it happened to my boy. I wonder how many other teenagers this has happened to…

First of all, I’m happy to hear Tom is doing well in recovery from the crainiotomy. I didn’t suffer from chronic headaches, but I did have one massive headache about one month before my bleed.

I hope your son is doing well in coping emotionally with this. It’s been two years for me and many years for others here and we know how confusing and traumatic it can all be. Stay strong.


I suffered from horrendous migraine throughout my teenage years. I was treated with every medication for migraine in existence, and nothing helped. It was impossible to get rid of the pain once one of these supposedly migraines started. Along with the migraine I got bits of my vision blocking out, and sickness. I wasn’t offered any investigations whatsoever, just a cocktail of painkillers, which I eventually gave up taking and just put up with the headaches. I’ve been told that my AVM could have gone at any time. I’m just lucky to make it to adulthood.

Dear Elaine, I know just how you feel and we are not alone. It can be rare but there are still thousands of people. I was traumatised too, cried a lot, even after my son first craniotomy and full recovery. It is really a trauma to the whole family.
Now he is going to have another craniotomy and I need to be strong again, find some water in an empty glass. I think one year is a small amount of time to feel free from all the trauma, so don´t feel guilty. You just need to face the positive outcome, Tom is avm free and doing so well. I do the same in my son´s case, I know it could be a lot worse. So, thank God. Love to you all.xxxxx

Hello Erica, thank you so much for your words. My darling Tom and your darling Daniel… I am so sorry. I had completely rejected there being anything wrong with Tom once the craniotomy was done, I really believed he was cured and now I have to listen to the surgeons caution and wait and see. the waiting is the worst bit but you just have to do it and you have to be strong. Tom is chillin watching TV sharing a glass of beer with his dad analysing th efootball. it’s momnets like these that keep me steady. Love your boy. Take care. Elaine

Hi Elaine, I also had an AVM in my frontal lobe, left hand side that ruptured in November 2007. Mine just ruptured without any prior headaches or warning so I never knew I had it. I had no idea it was unusual for it to happen like that. But I also had a crainiotomy and an embolization in November and January this year and I have no recurring symptoms or side effects. I am completely fine. It seems rare that I recovered so well after reading everyone else’s stories and you should count yourself lucky. I’m 22 years old so I’m not exactly a teenager but I’m still young. The good news is that this happened to Tom when he was young too so he’ll have the rest of his life to live without any effects. I wish you guys all the luck in the world with his continued recovery.

What brilliant news Hannah. Did you have the embolisations before or after surgery and are you still on medication, am I too nosey!!! I agree that Tom has youth on his side and his recovery has been remarkable just the seizure at easter threw us so now we have to see what happens. You sound sorted…best of luck
Elaine X

Hi Loz,
we only found out that Tom had an AVM because I insisted they investigated his chronic headaches further. Like you he had been on all sorts of medication to no avail. After the bleed etc everyone said it was really unusual for AVMs to cause headaches as most don’t have any symptoms unless they rupture or cause epliepsy but you and I know different…Tom is delighted that his headaches have gone at last I don’t think people take headaches seriously enough and I do wonder how many more folks out there have this condition. As you say you and Tom are lucky to have made it. Thank god for brain surgeons eh …Elaine d

Hey Elaine, I had the embolization in January - 2 months after the surgery. I am still on Dylantin - my doctor wanted me to stay on it at least until October- but that’s fine with me. You’re not too nosey, at least on this site everyone knows what we’ve been through.

My husband had his when he was 8. He’s 32 now, but still sufferes in my opinion from it. He has no short term memory, he still limps on his right side and his right arm will seize up. Occaisionally he makes social faux pas like not wearing shoes to resteraunt etc. He was in a coma for 2 weeks, and his AV M burst. I myself and a epileptic, and I struggle to understand what he’s thinking and trying to understand a way to come to a common ground. I am curious have you had any issues with your son either psychologically or physically this way? I would so appreciate an outside look other than his mothers

i’m really glad that tom has been doing great for a whole year now! it is rare for a bleed…my 2 1/2 month old son had a seizure and so he had some tests done and from that we found out that he had a bleed which led to the discovery for his multiple avms (hundreds)

Hi Libby, I like to pretend that Tom has no after effects and he doesn’t appear to have what your husband has in relation to weakness but physically he does tire easily and he often looks completely washed out. Psychologically i know he is fearful and his short term memory is poor which was difficult for him over his recent school exam period but we just use humour to jolly him along and it helps us too… He does sometimes struggle with trying to find a word or remember a name and I can see him racking his brain looking for what he knows is in there but we all laugh and pass the over the moment, I hope this improves for him. sometimes I put his behaviour down to him being a teenager so I guess we just have to wait to see what emerges. I am just so grateful that we have him.
Best of luck with your man…Elaine

Hi Jaimee, sorry to hear about Nathan and his plight. Tom’s surgeon told us that there were cases when peoples circulatory system of the whole brain was affected by AVMs and I guess Nathan must be one of them. I am sending positive healing thoughts to both of you. Peace and Love