Quantcast

AVM Survivors Network

Residual AVM micro-bleed? Or do AVMs grow back? Or just nothing to worry about?

#1

Hi, I was given the all-clear after an angiogram about 8/9 years ago after previously having had 2 gamma knife surgeries. Yesterday, though, I had a sudden uncomfortable head pressure, nausea, and out-of-it feeling that was similar to how I felt when I was 12 when I had my brain haemorrhages, but less intense. Today I also have a similar kind of neck discomfort and still a bit of pressure and pain in/around my head, and still don’t feel completely ‘with it’. However, I have not had anywhere near the extreme pain or discomfort I had before. I am able to walk around, work, do all my everyday (low intensity) activities.

Is it possible that this is just a residual effect of what is no longer really an issue? Like, maybe it’s a bit of extra blood pressure where the AVM used to be, or could it be some kind of non-serious micro-bleed from the vestiges of the AVM?

Or is it possible that the AVM has grown back and this is a tiny bleed in what could end up being a massive rupture? Or could this all just be in my head (so to speak)?

Either way I’m really not sure what I should do. A&E seems a bit extreme because of the minimal symptoms (I’ve had migraines and even headaches that were much worse than this, though the fact that this has continued into day 2 is concerning). My GP has no available appointments it seems - they always seem fully booked. I know this is going to fade away after a while, I guess I’m mainly just concerned that maybe it could be an AVM-related issue that might return with greater intensity at some point.

At this point I feel like waiting for an appointment with a GP just to mention that this happened, but I imagine by that point they might not be able to detect whether or not anything did happen (should they wish to scan it).

Does anyone have any advice or relevant experience for a situation like this? Or knowledge about vestigial effects or the potential for cerebral AVMs to return? (I was 19/20 when I was given the all clear, currently 28).

Mike

#2

Mike,

I think it could be any of these things. I think it is reasonable to consider it potentially serious. The only people who have the equipment and expertise to look at it are A&E though I get why you feel it might be an over-reaction.

I would seek a doctor’s view on what has happened promptly, so don’t be put off by the GPs receptionist, ask for an appointment today. If necessary, consider an out of hours appointment. If you were to talk to 111 I am sure they would send you for an out of hours appointment.

If at any point you get a serious degradation, go straight to A&E.

A&E deal with stroke-like symptoms all the time and (certainly when not busy) I am sure will happily check out that you dont have anything untoward going on.

Stay safe,

Richard

#3

Hi Mike, As much as we would love to help you we are not medical experts and can’t really give medical advice but only offer our experience with AVM’s… I recommend seeing another Doctor or going straight to ER if your concerned.

It may be beneficial to contact the Doctors who assisted you with your original gamma all those years ago etc but I can definitely relate to your concerns… please seek medical attention immediately as mentioned & please keep us posted on your journey.

I wish we had medical experts here to give advice however no one can really do so online without really examining face to face… wishing you all the best & sending prayers your way buddy… God bless!

#4

Thank you both for the advice, I phoned 111 and now have an appointment shortly. It’s kind of scary seeking medical help alone, sometimes it takes someone on the internet for that push :slight_smile:

#5

It’s just worth getting a proper medical opinion. Completely understand.

#6

Thinking of you Mike and glad to hear you’ll have an appointment soon!

Best wishes and do let us know how you get on,

Corrine

#7

So I was referred for an overnight CT scan, which found no bleed, and then I had a lumbar puncture for a full guarantee. All good! The relief is palpable. I’m back home now but have to recover from the lumbar puncture back/head pain (never had one of those before, after-effects not too pleasant!).

Thanks, everyone :slight_smile:
Mike

#8

Well done! We blokes are famous for putting medical stuff off to the last minute. Its not the right thing to do. I’m guessing they seemed very happy to get you checked out.

Its great to know they found nothing and that you really feel relieved. Well done.

Richard

#9

I was diagnosed with a left occipital lobe AVM after suffering a hemorrhagic stroke 5 months ago which resulted in a small blind spot in my right field of vision. About 3 weeks ago I woke up with a splitting headache and had some minor alterations to my right field of vision. They symptoms were no where near as bad when I had my stroke so I didn’t go to the ER. However, I experienced very similar post stroke symptoms for several days (extreme fatigue, mentally foggy, continual dull headaches, grasping at words, etc.). So I emailed my neuro doctor and they responded same day and scheduled me for a CT Angiogram to see if I had another bleed. The results were no new bleeding. So I am still baffled at what caused similar symptoms to a stoke. A friend of mine had 2 craniotomies to remove a tumor and she will experience symptoms of tumor regrowth even though there is no tumor. Her doctor said the brain remembers the trauma and creates similar symptoms from time to time. Not sure this helps at all other than I can relate.

#10

Very true, Richard, I normally wait far too long to see the doc!

AprilY that sounds super stressful! I had a similar experience the day after the angiogram that verified my AVM had been resolved in 2010, in that I had my first ever (and worst ever) migraine - and not knowing what a migraine was, I majorly panicked (I had a giant aura that obscured a lot of my vision, and head pain that seriously rivalled the brain haemorrhage). Eventually it went away and I worked out what it was (I saw A&E and they said it was a mini-stroke? And sent me home??? Very odd). Felt a bit like sod’s law that the procedure that verified I was ‘cured’ then caused me to have months of periodic migraines, hehe.

Although the symptoms you had seem like they’d be more worryingly serious, especially after a stroke. The idea of your brain creating similar trauma symptoms does sound kind of terrifying, I sort of hope that’s not too common. And I hope you are doing much better nowadays! Your friend sounds like she’s had it rough too! Thanks for your story :slight_smile: Good to know I’m not alone with these things.

#11

Mike,

I’ve had headaches for years prior to finding an AVM and they were to do with my neck, which makes them possibly linked. But when I had an angiogram, I had migraine auras for the first time ever. No headache, just the aura, which in my case was either a scintillating scotoma or a negative scotoma. The scotomas lasted for a few weeks after the embolization (and its angiogram) and for a little while after the re-scan angiogram.

So I think your migraine and aura could just be a reaction to the contrast material used in the procedure.

If you follow my pattern, you might have them repeat for a while. Quite remarkable to have such effects when you’ve grown up not used to such things. If you keep getting them, definitely ask the doc about them but otherwise migraine (in itself) is usually harmless.

Hope this helps a bit.

Richard

#12

My experience with auras (which initially I described only as “visual effects”):

and

and finally