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Happy day today at 6 months post intracerebral bleed :))


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Had the results of my angio and MR scan today they can find no vascular abnormaility and the hydrocephalus is not returning yay!!!!!!!!

However there is still blood there 6 months on and they are going to re scan me in 12 months to check for a cavernoma?

Has anyone ever heard of this?

My neuro said I am making a remarkable recovery as the size of the bleed was very big....:shock: I am now back at work 12 hours per week and feeling much better akthough still dizzy and tired!

Just wanted to share as I usually only post when I am worried and today feel happy :lol:

Jo XX

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This is wonderful news. I know after my third angiogram I felt relieved. I am at 9 months and still have dizziness. Hate it.

I had to look up canvernoma as I've never heard of it before.

So glad your spirits are up and the doctors are impressed as well. Keep up the good work!

I

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Hi Jo

That's great news! Like you I had an intracerebral bleed of no known cause (yet!). I'm only 2 months in, but the doctors suspect mine was also caused by a cavernoma (sometimes also caused a cavernous angioma).

My understanding is that it's a deformed blood vessel, usually something you were born with that has just been a ticking time bomb. I did some research a while ago and read something that said they are actually more common than we realise, it's just in many people they go completely undetected as nothing ever happens with them, but that in some people they just spontaneously burst. Generally I think if your MRIs come back clear (once all the blood has cleared) then it probably means you've had a cavernoma and it's now completely disappeared. I think in some cases they do still persist and then they can make a decision to either leave it alone or do some surgery on it. I imagine your neurologist will explain it all if/when it comes to that, but I'd recommend having a quick look at the Cavernoma Alliance's website (I found lots of information on there):

http://www.cavernoma.org.uk

I hope the blood clears away for you soon - my neuro told me that all the blood irritating the nerve endings is what causes my headaches etc, so if you still have blood there I imagine that's why you're still a bit dizzy and tired? I'm due another MRI at my 3 month check-up when they're hoping all of my blood will have cleared, but they have warned me that in some cases the blood takes longer to dissipate. I'm anxiously awaiting the phone call to call me in for MRI as I've been told until they can see what was underneath all my blood they can't 100% rule out something more sinister like a tumour (I also absolutely hate having to have MRIs as I can't stand the noise or being inside the scanner!).

If you don't mind me asking, where was your original bleed and how large was it?

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Hiya

Well it was a cerebellum bleed and quite a big one too!!!

Don't be surprised if there is still blood there at 3 months, apparently it takes up to a year :(

I also acquired hydrocephalus, which I think has caused the most harm, but I am delighted that my ventricles are normal!!

Keep in touch as I think we have lots in common!!!

Jo x

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Jo

I'm really hoping the blood had cleared for me at my 3months, but only because when I was taken ill in the US (I ended up there as had bleed on holiday in the Caribbean) they told me I would have a follow-up MRI after 6weeks when they hoped it had cleared! My neurologist in the UK then said that the 3month mark is normal as it usually takes at least that long for it to all clear. He did say in some cases it takes longer (even years!) but he was hopeful that most of the blood would have cleared at 3months.

I thankfully didn't have hydrocephalus (at least I've never been told that I did!) and my bleed was about 3cm and in the left occipital lobe (so it's affected my vision).

What tests did you have initially? In the US I had CTs, MRIs, angiogram, then they also checked my heart using a transoesophageal echo and had numerous blood tests as well as an oncologist checking my skin all over to rule out skin cancer as a possible cause! They found nothing - absolutely everything was normal and I didn't have any of the risk factors (e.g., no family history, no smoking/drugs/excessive drinking and I'm only 27yrs old). Back in the UK my neurologist agreeded the US doctors had tested everything thoroughly so he told me to go away and come back in 3-4months! Now just trying to rest lots (still have headache and fatigue, as well as vision loss).

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