I was pretty much headache and eye ache free post surgery which was amazing!
Now since starting work, I’m not sure what to think because I’ve been taking it pretty easy but I’m back on normal painkillers all day for headaches every day and eye drops all day long as they are so dry and feel like they are going to pop out of the sockets again
Some headaches are very bad but not as bad as my daily ones pre surgery
Feel like a lot of pressure in head like prior to surgery
I had a few days off work and no headaches and only minor eye aches…
I’m very unsure what to think as it coincides with work but it doesn’t necessarily mean that anything is wrong in brain…? It could just be work related…either way that’s not good lol
I just hit 3 months post mine - sounds about similar. Maybe mine is better, maybe not - I really try my best not to let it get to me. But, it’s difficult when I perform the same task I used to & it’s just not the same.
Same kinda stuff - pressures behind eyes here & there + what I call rolling headaches. Feels like my skull just starts aching in random parts at random times - but, it’s mostly fine
The pressure from life is worse than the pressure behind my eye - I’m still accountable for the same stuff as before all of this happened
I don’t think there is an”there” anymore. . . It’s just here & we have to make a good use of it
It’s not so bad over “here” so far - it’s just different. And, dealing with a health change can be a real burden - I’m done being a hypochondriac, it’s day by day on how I feel - if I can manage another full day of work in 100 degree heat - I am doing fine. Lol
I can’t relate to the pressure behind the eyes thing but I did have weird sensations on the top of my head. They lasted ages and sometimes faded away and sometimes returned.
I got so bothered (and had a day or two of especially dizziness) that I went back to my primary and asked for help. He referred me back to the neuro and the interventional radiologist. After waiting six months for subsequent scans and a further six months for the results (free healthcare has these issues) I got “no fault found” and was encouraged by the interventional radiologist in particular that I just needed to get used to the new plumbing.
So I do think you may have some getting used to to do. Today, there is nothing apparently amiss with my head and I feel 100% back to pre-DAVF symptoms. Honest: 100%. But. It. Takes. A. Long. Time.
Meanwhile, do whatever seems most sensible re looking after yourselves until you’re further through recovery.
I’m sure you’ll get much better. I just hope you’re both pretty early in that plan.
Thanks mate. I guess honestly I thought silly that everything would be “fixed” and after surgery with everything so great, I felt fixed. So when you seem to go backwards, you think the worst. You’re probably correct, things will pop up n and then and go backwards it seems but it’s a process and progress… Just doesn’t always seem like it
Now you said that, I’m recalling new things that popped up after surgery that went away… so this might just be the same:)
I started back to work 1 year ago. I was 5 years out. I have headaches constantly and take pain medication daily. I feel about the same regardless if working or not. I could stay at home but i felt i needed to at least try to work. When i went back to work the first time, 3 months after surgery, i just couldn’t do it. I would say keep going forward but if u can not do it, take the break. Disability is not easy to get on but i would recommend it. This is what worked for me but u may be a little different.
Often? Probably 9 months or longer. I was concerned that, as I had to wait from feeling quite odd in the Sep or Oct after my op in April '17, I had to wait until March '18 to see the neurosurgeon and during that waiting time I ebbed and flowed again as to whether I felt ok or not.
Even as the results were given to me in Sep or Oct '18, I was still not wholly convinced but honestly putting it behind me mentally was the best fix at that point. I think we get to analyse every little feeling and worry that it portents something bad but maybe (in normal life) we have lots of those things but we just ignore them and get on with life and actually, it all turns out fine. So put minor stuff out of your mind. Anything really weird I would do something about but minor? At some point you have to put it out of your mind.
I’ve re-read my detailed story, linked just above, and actually it sounds like I degraded through months 7 to 12 rather than my recollection of it being sometimes progress and sometimes regress. That I felt quite poorly by month 12 is a bit of a surprise to me now.
However, nothing more was done. I had a bunch of scans but the conclusion was that there was certaintly nothing significant going on. Getting into a more positive mind set at about the 18 month mark feels like the major change.
If anything, I’d encourage you that the process is definitely a long one, put as much behind you as you can and take your recovery steady.
My other incitement is usually to keep your mind busy with something - something you enjoy but also something that does require the mind. It helps to move away from thinking about your head all the time.
@DickD your story makes perfect sense and is exactly what I’m going thru!
I’m very skillful at putting my brain stuff out of my mind “overall” but head pressure, crazy eye pressure and pain and 24/7 headaches that appeared after being great for 4 months do remind me sadly lol
Your story helps as I’m now at 9 month mark and as you said at 12 months you were bad. So that’s a help to me!
I’ll post my angiogram results once I can put words together but I seem to be similar to your case which is why your story is so similar to me (which helps)
I wouldn’t call it temp sensitive, I just look almost constantly flushed - my neuros spoke to me about this. . . Prior to all of this, I’d get reddish after a workout or when I drank - now, it’s just why are you so red - they called it, ummmmmm, ummmmmm - watch your BP
My BP is still in check - to me, it seems like there is more blood flow to the outside of my scull on the left side. The veins on the left side of my head have be more prominent ever since my embolization.
When I do turn red now, it’s starts with the left side - then quickly covers the rest of my head & neck
At first, I was a bit sensitive - my head would feel quite odd when the temperature changed - I actually started a thread on here about it on here
But, now - that’s what I get. . . I’d post a pic if I could, I sent it to my wife the first day I loaded up the weights at the gym. . . The vein by the temple on the left side of my head(that’s where my AVM is) looked like a gummy worm under my skin & was red af - since then, it calmed down just a bit. . . . Doesn’t cause any discomfort any more.
At first, my left temple throbbed bad right where the vein runs over it.
If it helps, I felt I was looking quite flushed at one point. I’d say about a year post op as I think I mentioned it to the neuro. Everyone complimented me on a good colour and asked if I had been on holiday… no. Don’t remember anything else about it. It must have faded at some point.