Does an AVM rupture always cause intracerebral haemorrhage (ICH) My daughter had this following her AVM rupture. Shes made a great recovery, with no defecit, but I have read that those that have had a ICH have a shorter life expectancy as in they barely make it past 5 years?
I think a good proportion of those of us who’ve had a rupture will have had that intracerebrally. My understanding is that it means that the bleed is into the space of the brain tissue, rather than, for example, into the meningeal space.
Have you looked at a general article? The reason I’m asking is because such a bleed occurs much more in older people, more often in men and so on. So, in an article I’ve just read, the prognosis is really quite poor but I think the reason why the figures in the article I’ve just read are so bad are because it is weighted towards the majority of cases – i.e. adults over 50 or 60. What I’m less clear on is how the shape of the “survival curve” changes depending on the age of the patient: I’m quite sure that the more elderly one is, the less good the prognosis is.
So I guess I’m asking whether you’re worrying about statistics that overwhelmingly will relate to much older people or whether you have found something that is relevant to someone of Millie’s age.
Thanks for your reply. I hopr you are keeping well.
I received a copy today of a letter that the neurologist had sent to my doctor’s re problem and treatment for my daughter.
They said her AVM was right frontal lobe with ICH being secondary source to the AVM. So knowing very little about ICH, I did the bad thing of turning to google and asking about ICH. i wish i hadnt because all the pages were reporting about life being shortened after having one etc. I think maybe they have took findings from age specific categories as there was no mention of children, it was all very generic.
Thanks for taking the time to read and reply. I appreciate it.
That’s what I thought!
I don’t think the stats will be reflective of Millie’s case because she’s the other end of the age scale from the greater proportion of “average” patients, so talk to the doctor or nurse about it if you’re concerned rather than relying on Dr Google.
The one “worry” I’ve got is whether ICH refers to intracerebral haemorrhage or intracranial hypertension. But generally it is much better to ask the doctor what this stuff means (because some things on reports are not things to worry about) rather than try to work stuff out yourself.
Just adding to Dick’s comments, ICH can be caused by various things including aneurysm, trauma and AVM among others. Of these causes there is a lower death rate associated with AVM than (for example) aneurysm. My neurosurgeon has said that an AVM bleed is often best described as a ‘leak’ because the vessels are generally under low pressure as compared to an aneurysm rupture where there is arterial pressure and worse outcomes on average. She has survived her AVM bleed, and the danger from this particular bleeding episode has largely passed. There is a risk of future bleeding but this is generally quoted as roughly 3% per year annual risk. Her life expectancy is not affected by the bleed she has already suffered but there is some ongoing risk in having the AVM. There are treatments which you no doubt have read all about which can help to reduce or eliminate this risk for many.
Best of luck!
Thanks for your message. Its relieved some of my worries. My daughters AVM was in her right frontal lobe, but she underwent three life saving opetations, drain, embolization and craniotomy to remove the AVM. We go back at some point in October for her to have an angiogram which will be her first follow up one since rupture in July. I am quite anxious about it as ive heard of regrowth particularly in children. Also angiograms do have their own risks. Just praying all will be ok.
How are you doing? I hope all is ok with you?
It’s fantastic that your daughter’s AVM has been removed. From what I have read, re growth can happen but is relatively rare, so fingers crossed for you! If her AVM has gone for good, and she has no serious morbidity from the bleed then I would say there is no impact on life expectancy whatsoever. What a relief it must be to have this behind you all!
I’m fine thanks, I have a large AVM in my right occipital which bled once with only mild effect. Had gamma knife three years ago and now waiting for it to react. Life is good and I don’t worry about it too much.
All the best, it would be great to hear the results of her next angio. On angio risk there is a small risk of stroke etc but I believe it’s very low, definitely worth checking this. Personally I will leave mine as late as possible when/if the MRI shows obliteration so that I can minimise the chance of having to have another.
I will keep you posted on how we get on with our first post op angiogram. Please also keep us posted with your treatment. Ive heard of such successfully outcomes with Gamma knife etc.
Its great to speak with those that are in similar situation, although it would have been much nicer under more positive circumstances.
It seems you have a great outlook on life and i believe positivity is key.