AVM on Brain

Hi My son has an AVM on his brain, diagnosed on the 13th Feb this year. He has had a little bit of bleeding and was in hospital until the 23rd Feb. They gave him an Angiogram when he first went in and now (almost ten days later) they have decided to leave him for six weeks and then do another angiogram. It is too deep to do surgery, they have said.
Feeling very frustrated. Has anyone else had this experience of just leaving it!

We recommend get several opinions, Softraen, before determining the best course of treatment. The UK group can give you some doctor recommendations.

Hi Softraen,

I agree with Dancermom. I don't know how old your son is but, no matter what - I would most definitely get another opinion. Find a dr. or a group of drs. that specialize in AVMs.
They may want to wait for another angio to give the brain time to heal and let the swelling go down - if there is any. That's just my guess on it. I had a small bleed many years ago and the excess blood was still there for a short period of time, so I was told.

Does he have any problems from the bleed? Such as a continuous headache, balance problems, things like that? Or.... Has he recovered well from it? I pray he has.

Tell him not to overexert himself and NOT to do anything that raises his blood pressure or his heart rate. Also - don't do anything that puts the head below the heart level for any length of time. Such as certain kind of exercises. Avoid all blood thinners too, like aspirin. Oh, and not much caffeine either.

If it is too deep for surgery, as they say. Then radiation is the next option.

I hope this helps you and your son,

Ben

My son is 12. He initially had headaches but they have pretty much gone. He has lost a bit of his periferal vision. Did you recover fully or do you still have issues.? Sorry to ask, the doctor is being evasive about the long term effects. Are you able to live a normal life now doing sport, schooling etc
thanks

Softraen, I totally agree with the information sent by both Dancermom and Ben. Do some research and find the best AVM neurosurgeon in your area. As dancermom said, join the UK sub-group and ask them who treated them.

As for side effects after a bleed, every case is different. My hope is that your son won't have long term issues. Time will tell.. It takes much longer for your brain to heal, for example, then the healing time it takes for a broken leg.

Please know we all are here to support you!

I only had a small bleed with no permanent side effects. That was, oh my,...8 years ago(?).

I am now disabled with multiple symptoms. A couple of the drs I saw ( I saw 9 total) think it's from the G.K. I had in 2007. My problems didn't present themselves till 2 1/2 years later. But, that was me. Not everyone has problems from the G.K. There are many, many people who go on to live a normal healthy life.

If it helps - My neurosurgeon told me he had a patient who had an AVM that took up most of his brain. No dr from all over the country (USA), would touch him. They said it was too big for any kind of treatment. It did NOT give him any problems and he lived into his 70's when he passed away from a heart attack.

Ben

I forgot to mention - I still have two small AVMs left.

Originally it measured 5 cm. I was offered another G.K but, I decided not to do it again. At least not yet (smiles).

His bleed is pretty recent. There is a very good chance his vision will improve. It takes longer for the brain to heal in comparison to any other part of our body.
It's hard for a 12 year old boy to take it easy but, that's what I would suggest for him. For now, anyway. Try to teach him to be aware of his body and how he is feeling. Especially if he's been active in any way.... For example: If he feels a headache coming on, then it's time to stop what he's doing (if he's being active)and rest. If he's feeling any pressure in his head (I get that alot) - it's time to rest. These are just some examples but, I'm sure you get the idea of what I'm trying to say.