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AVM Survivors Network

AVM Intraparenchymal hemorrhage with intraventuclar extension

Hi all, had a hemorrhage March 11th 2018 and was in hospital for 8 days they diagnosed it as Intraparenchymal hemorrhage with intraventuclar extension and thought I had AVM. I recovered really quickly which shocked the doctors and I got out quickly I then had to wait some time before they arranged an angiogram for me. I had an angiogram on 12th June 2018 and they cant find anything related to AVM, even though they were pretty sure that is what it was now I am even more confused could they have missed it? I now have another angiogram in 4 months time to look again and been banned from driving for a year as my sight is not 100% but I am back at work and doing light exercise, any advice is appreciated, I am scared to get back to normal to soon just incase they have missed the AVM and I end up bursting it again if it is their. Has anyone else experience this with regards of them not finding it the first time? Should I try and get a 2nd angiogram from a different hospital if possible?

Finlay

Welcome! It’s great that you found us and I hope we might answer some of your questions… to note, we are a patient community not doctors so this is more about sharing our stories and support than being able to help you towards a diagnosis.

I’ve read up on the terms you use about your bleed / stroke. From what I can tell, they just indicate the very broad places from which you’ve had a bleed, rather than indicating a cause. From what I’ve read just now, the cause could be an AVM or could be something else.

What I can share with you is that all of us have been through this sort of shock and have to come to terms with a narrow escape or what feels like Time’s sickle poised to strike at any moment. We can be with you on that, definitely!

I think I’ve seen stories here of people having issues and the root cause not being found for ages. Usually, I think, when an AVM is an underlying cause but not actually effecting a stroke. I would guess that part of the issue could be that a bleed really makes a mess and whether it is difficult to see the cause in amongst the damage, I don’t know. Certainly, AVMs get missed.

I have to say an intraparietal haemorrhage with intraventricular extension sounds quite dangerous so I would err on the side of caution and get a second opinion, yes.

However, do your best not to worry. Do as your doc tells you re recovery, keep your mind busy – find a hobby you can do that stops you thinking in idle time – and if you get any deterioration, especially if in any way significant, go straight back to the doc. If significant, go straight to A&E.

I’ve got a wristband with my medical details on, which helped me to feel a bit protected and stop thinking about my AVM so much. It meant that if someone found me at work, in the street or wherever, being confused, lying in an ungainly heap on the floor or otherwise, they might find my wristband and dial 999.

Hope these are useful thoughts. Best wishes,

Richard

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Hi Richard,

Thanks for your help on this I spoke to the consultant and I can go back to exercise such as fitness classes but need to stop if I feel anything. I am not allowed to play football or lift heavy weights just now, also something I should have mentioned 2 days before I collapsed and went into hospital I had the football hit very hard against my head that they stopped the game to see if I was ok & then I had the haemorrhage 2 days later on the Saturday. When I told the surgeons they laughed it off saying this is very unlikely to have caused it. Now though they are not ruling it out now and investigating it as an option as they cant explain what happened. I need to go back for another angiogram in 4 months, also if anyone is getting an angiogram soon I thought I would add my experience of it, its basically like being at the dentist couple of seconds pain from the Jag you receive then thats it regarding pain.

It all makes sense. As an AVM patient, certainly with an untreated AVM and risk of a bleed, heavy exercise is a no no. Equally, “impact” is a likely cause of a bleed, especially if you have some weakness – e.g. an AVM – at or near the impact point.

How you feeling about it? Are you ok? You sound calm enough but with only written words to go by, it is difficult to tell.

Best wishes

Richard

Just got some weird and wonderful news they can’t find anything my head has completely healed after the haemorrhage, 1 theory the surgeon has that my avm has been completely destroyed when it burst and its gone and they will get me in for another angiogram and MRI in 4 months just to be 100% safe. But I’m allowed back at everything and all my restrictions have now been lifted. Still might be banned from driving as my eyesight is not driving standard still but will check again in 6 months. Has anyone else has this result regarding it bursting completely if that was the cause.

Just another follow up now had 2 angiogram 3 mri and 1 mra and they can’t find anything so hopefully it’s been self obliteration. Got another mri in 6 months but the hospital said probably a waste of time for another angiogram

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Just another update, everything is going good had a seizure at football In March. This was the 3rd time I got weird smells but the only time I had a seizure after the weird smells. Was in seizure for about 3 minutes then out of it for 30 minutes. Woke up in ambulance and was fine and got out hospital after 5 hours as everything was ok.

After followup appointments

  • been told to lay off caffeine

  • If I get the weird smells stop what I am currently doing if doing a sport etc.

  • No heavy weight lifting

  • Careful with alcohol consumption

So just an update just in case anyone finds this information useful, I am back playing football, running and cut out the weight lifting.

It’s a useful thing to have some kind of warning or aura before onset. It’ll be good if smelling the weird smells and taking time out does stave off the seizure.

I hope it works! Good share!

Richard