Intracerebral haemorrhage

Hey,

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?

Sarah

Sarah,

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.

Best wishes,

Richard

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Hi Richard

Thanks for your reply. I hopr you are keeping well. :slight_smile:

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.

Sarah x

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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.

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Hi Sarah,
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!
Jonny

Hello Jonny.

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?

Kind regards

Sarah :sunny:

Hi Sarah,

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.
Cheers
Jonny

Hi Jonny,

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.

Sarah

Hi Sarah! Just wanted to jump in as I’ve been away from this community for a bit. I’m so sorry you’ve had to experience this with your daughter. I hope she’s healing as well as can be. I had a similar situation to Jonny, I had an AVM rupture in my occipital lobe. This was almost 2 years ago, I was 36, so not a child! But, I also will have regular scans to watch for regrowth. The hopefully reassuring news is, AVMs in the brain are slow growing. With regular monitoring we can know right away should they reappear, but as Jonny says, that’s not necessarily all that common. I’m actually part of a long term study to learn a bit more about that aspect and can say with confidence, there are some amazing neuroscientists and researchers working on AVMs, stroke and associated situations.

Just like your daughter, my AVM caused intracerebral hemorrhage (ICH). I underwent an angiogram to search out the AVM and then a craniotomy to remove the blood clot and resection the AVM. I had a second surgery three months later because the blood clot was hiding some of the initial AVM. I want to tell you that while recovery isn’t always a straight line, things do get better in their own way. What admirable strength you have as a mom and your daughter has as a survivor! I hope your daughter’s recent angiogram went ok and you have positive results.
Take good care, Savanna

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Savanna, thank you so much for responding to my post. I really appreciate it and your words are encouraging.

How are you doing after your rupture and treatment? I have heard its very rare for AVM’s to grow back in those aged over 25. I will keep my fingers crossed that yours remains obliterated and you have no further scares.

My daughter has her angiogram on 16 November, first one due on 19 october got cancelled. I am hoping in all hope for good news.

Thanks again for your kind words.

I wish you all the best too.

Sarah x

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Hi Sarah,

Happy New Year! I caught up on the great news belatedly; I’m so glad to hear your kiddo’s angiogram was clear. I think other survivors can probably relate, but others’ good news really has such a positive impact on us :slight_smile: I’m really glad you can move forward with this weight lifted. Thanks for asking about me! My AVM was successfully resectioned/obliterated after 2 surgeries, which I’m so grateful for. So yes, my care team feels it’s pretty unlikely for any new AVMs to form since I’m in my 30s. I’ll still have a 5yr MRIs just to be safe. Recovery from a rupture/stroke is certainly up and down. I’ve just passed the 2 year mark and I feel strong and improving. There are losses (memory and some executive function, focus) that are hard to accept, but I also have so many functions unaffected and for that I’m grateful.

Very best wishes to you and your family and thanks for sharing that really exciting and great update with us all!
Savanna

Savanna, thank you so much for your lovely message. Happy New Year to you and your family too. Im so pleased to hear you are doing well and getting stronger every day.

Wouldnt it be nice to put this all behind us. Funnily enough, im back at the hospital tomorrow to discuss in full her angiogram. I need to write some questions down. I think her keppra medication may also be discussed. I only had a brief chat with the neurosurgeon on his way home so it will be nice to get some more detailed info tomorrow to confirm its gone. I am very nervous about reoccurence though but the suegeon advised they’ve never had reoccurence at their hospital.

Lets hope for a great 2023. Sending best wishes to you.

Love

Millie’s mum sarah :heart: xx

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