Hi everyone
Thanks for being added to the group
I just want to firstly say how fantastic it is to find a site that’s so informative and helpful and comforting thank you
My own story is I was diagnosed at the age of 56 with a right occipital lobe davf in March this year and was treated by embolisation in April and have just had my 6 month angiogram and been given the news it’s all clear which is great
I still have a small AVM but have been advised to leave it be
My question is does anyone suffer from headrushes …. When I get up from a couch or sit up quickly the blood seems to rush around my head for a few seconds
It’s a bit disconcerting but my neurosurgeon doesn’t think I need worry about it……but I do
Anyone else have this experience
I have them when I get up and my left side will go tingly and numb for about 5 to 10 seconds
It’s great you found us, there is certainly a lot of experience in our group! I can’t say I experienced what you describe. I have got light headed a few times but usually due to hydration issues, which I am paying much better attention to. My blood pressure is consistent and I know drops in BP can cause light headedness when standing quickly. Might it be related to BP, maybe due to AVM? Just a thought. Take Care, John.
Everytime I move. On a couple of occasions others around me have had to grab me so as not to fall over. Sometimes I need to brace myself against a wall or furniture, just until the dizzies stop.
A Bit?? I find it VERY disconcerting, almost disorientating. Like I loose my orientation with things around me. An example, the phone rung. I jumped up to get it, got dizzy, but I was already in motion and collided with the coffee table, ending up in a pile on the floor with a tennis ball sized welt on the side of my skull. The table had been there for years/decades, I knew it was there. But my depth perception suddenly vanished
Mine neither. Their response was “Well, don’t stand up too quick then…” That’s not an answer.
JD’s point about BP is well worth investigating. I have a bit of a dicky ticker (heart) anyway, so this was an easy option to be pointed out as the cause, but I had the heart issues prior to surgery. I didn’t have the dizziness before surgery though. The cardiologist gave me a heart monitor, but upon review, he told me ‘It’s not your heart…’.
I have to be very aware. I now stand then give myself a few seconds. Sometimes I can move OK, sometimes I need a few seconds more, sometimes its just easier/safer just to sit back down. But I’ve learnt I don’t just get up and move like I used to. That’s not safe. I need that adjustment time. It’s safer for the furniture (and me 
).
Merl from the Modsupport Team
Thanks Matt at least it’s good to know you’re not the only one
I regularly check my blood pressure and it’s never low so I guess it’s a feature of the embolisation
How do you cope I’m just getting up slowly
Thanks John for the advice
I thought it could be blood pressure but if anything my BP is slightly high so could be it drops when I’ve been sitting for a while I will check thank you
Thanks Merl I think we may have had the same neurosurgeon as he said exactly the same thing ……maybe they all go to the same school of medicine as they don’t have a great deal of empathy in my limited experience
Anyhow I think you’re right I should check my BP although it’s generally higher so maybe it drops at certain times … I will check it out
Thank you
@Paulofcfc when I mentioned it to my neurosurgeon he thought it might be related to the AVM but didn’t really say much. I told my family doctor about it and I’m going in for blood work and a EKG next week to rule out heart issues since it had chemotherapy as a child.
And definitely am taking it slowly getting up certainly don’t want to be fighting with the coffee table… you take it easy
Best of luck Matt hope you get on ok
Sounds like you’re at least getting to see the doctors and they can then check out your heart properly
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I had a DAVF embolised back in April 2017. My head felt weird for a very long time. If describe mine as “weird” or a bit “dizzy” but weird fits best. My doctor was convinced there was nothing visible that needed further work and that having embolisation (or, I assume open surgery) closes off the alternate route for the blood really quickly and that I needed to just get used to the new pressures – high pressure where it hasn’t had high pressure for quite some time, and low pressure in all the right places, too.
I felt weird for at least a year to 18 months after the embo. The best solution I found was to take the doctor’s advice that it was just something to get used to and not worry about it.
If it does anything serious, treat it seriously but if it seems benign, try to accept it as a “getting used to” to do.
Hope this helps,
Richard
Hi Richard many thanks that was very helpful and am feeling more reassured from yours and everyone else’s comments thank you
I think I’m still very anxious as everything has happened so quickly and am still getting used to my new normal self
Interestingly I see you had a Davf in right occipital lobe treated by embolisation which is exactly what I had so hope you are doing well
Thanks again
Paul
Yeah, basically the same as you and Mike also is a DAVF / embolisation patient, so we are on your side.
Does everything feel perfectly “normal” 4 years after the embo? No, honestly. But 99% of the time I feel absolutely fine and putting it out of my mind is the best policy for me. The doc said “it will take time to get used to the new flows”. What nobody in a hospital tells you is that is measured in years, not weeks or months.
When does mine feel odd? I’d say only when I exert myself. I’ve been going to the gym again in recent months, faded in going and then restarted last week. I’m feeling a bit weird today having had quite a session in the gym today. So I’m sure I need to be sensible (and I’d say to you to go really steady as a recent neuro patient). I’ll see how I go. But this is as odd as it gets and 99% of the time, surgery etc is way, way back parked at the very recesses of memory.
We all want to be “normal” once we’ve had the op. I’m not sure that’s realistic. What we need is to have our stroke risk back down among those of the same age. That’s all we actually need. And that’s what you’ve got.
A little input here, not exactly directed towards your issue - but,
When I use to power lift(deadlift & squat) clues to the 500 pound mark - I’d get “stars” - after the lest came down, I’d see something that resembled stars just sparkle throughout my vision
Those days are far behind me - and, now I focus on much more “effectively” training - much lower weights, in perfect form for very high rep counts
I have had a few head rushes(from just getting up too fast) during very heavy work days - since I’ve been working - maybe 3 or so total
We’re so different, I wouldn’t rule out this being a common occurrence for someone else with our probs.
What I also focus on more than ever is very very controlled movements & long stretches. I need to get into yoga - but, just don’t currently have the time. . . My work picked up so fast, one day I’m in Dallas, next California & so on.
I get home - and my house is falling apart, toilet is leaking, sinks are leaking, etc. . . I haven’t had a full day off in longer than I can remember - at the same time, I enjoy what you do(to an extent) and it keeps my “mind” off things.
Just try a few things out - see what you’re comfortable with.
GL! God bless 
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I am. Don’t know why this week felt particularly weird but that’s how it is. I’m not doing anything significant AT ALL.
@Paulofcfc on any other week, I’d have told you that 99% of the time I feel 100%. But honestly, it took a long time post op to get to that.
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“…maybe they all go to the same school of medicine as they don’t have a great deal of empathy in my limited experience…” Part of the thinking is that medicos need a disconnection from the emotional side but having a disconnection and a complete disassociation from the process are 2 different things. I also think that neurosurgery is one of those things that (thankfully) not many people need to experience and in 99.9% of cases none of ‘the experienced’ are surgeons.
I’ve had neuros state to me outright ‘Well, that shouldn’t be happening…’ WELL, I KNOW THAT!!! But that lack of personal understanding can be infuriating. I’ve often said ‘A housebrick would have more empathy’.
Merl from the Modsupport Team
Thanks again Richard I think you’re right I’ve only been down to the gym for a swim and some very light cardio and agreed about bringing down the stroke risk - I think i mean for me it’s establishing a new normal level and working within sensible limits to allow me to do the things I’d still like to do but maybe the thoughts of bungee jumping and zip wires will be postponed for some more leisurely pursuits 
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Hi Mike yes i did try yoga and was supposed to be doing some meditation class tonight but the other half is unwell so am looking after her (I guess it is the least I can do after she has been so good to me over the last 6 months) - yes at my age I think stretching and keeping supple is more beneficial
Sounds like you do a lot of travelling in your work so take it easy and don’t overdo it - stress is definitely not good for anyone
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Yes I’ve often thought that the surgeon should stick to the facts and they should have a support team with someone who can employ a proper bedside manner explaining what will happen in layman terms and how you are likely to feel after the treatment - as you say someone with more empathy
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But it does take ages to feel back to normal, so be patient with yourself and hopefully you’ll get there. If anything untoward happens, get checked out but hopefully you just need to give it time.
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