Last year my hubby had a brain bleed and was treated by embolization. His latest angiogram came back all good.
However, today he woke up in the middle of the night (NZ time) feeling “something” in his occipital lobe where the AVM was. Initially he said he had a headache but then he said it was more like he felt something in there, it felt tender apparently. Eventually it went away but now I’m left anxious
Has anybody had the same experience? I’m worried that he’ll have another bleed. Is that possible?
Was it a pain? Did he take meds for it? What was the exact feeling & how long did it last?
These are all of the questions they asked my at my neurological department when I went into ER last
I am over four months post embolization & brain bleed - I have many random traveling pains/sensations where the embolization was performed & where the bleed occurred
What my neurosurgeon told me “come in ASAP, if you feel it’s necessary”
So far, everything I have felt subsides within hours to days
No not really pain, he just “felt” something in that spot. He couldn’t really describe it. It only went on for a few minutes. He had a bit of panic attack then calmed right down. Now he’s fast asleep.
If it comes back he will let me know. I’m thinking of calling his surgeon tomorrow just to check.
@mike_az_21 It’s been over a year now. Everything else is as good as he can be. He’s working again. He gets mild headaches here and there. He also takes anti seizure medicine which i think sometimes causes depression.
But basically his recovery has been nothing but smooth until things like tonight happens and we start to panic a little bit.
It may not be anything serious but the trauma is still fresh. Hope your recovery is going well
I had a second bleed this year, after a 2007 Gamma Knife treatment and a 2012 repeat treatment. I will be having embolization in the next couple of months.
Hope he’s ok. I have random pains also (and the anxiety that comes with it too) but like Mike said, go in ASAP if he feels it’s ever necessary.
One thing I’ll say is I have noticed many strange unpleasant “new” things happen post embolisation but they are possibly normal and nothing to worry about although I do occasionally get anxious about them but they subside
I’m 7 months? Post embolisation
What anti seizure meds is he on?
Also out of curiousity, how long after his embolisation did he have an angiogram done? And have they scheduled more for future? I ask as every country is different I’m finding (some do no follow up) and they are having me have massive amounts of ct scans and mris and angiograms for the rest of my life (even tho its obliterated)
I agree with all of this. I had an embolization like @AlwaysCurious and @mike_az_21 I’d say that for at least a year, maybe two years I had periods when I felt less well and there were definitely strange feelings going on. I completely agree that if you get concerned about something to get it looked into: it is impossible to know if all of the feelings are “ok” because sometimes they may not be. However, I had my head examined* at the 12-18 month mark and was advised that everything was fine.
*I love this phrase
He’s in good company. In general, I’d say put the whole episode of surgery behind you, ignore it and carry on. If you focus on it, you’ll go through the same worries I did. I do think it takes a long time to feel 99-100% again.
If anything significant happens, go straight to the doctor or emergency, as appropriate.
Yeah, somehow I seem to be in the no follow up group
My PCP office asked me this the other day. I told them that my neuro team never asked for a follow up after the angiogram I had done at 5 weeks post embolization - it showed complete obliteration. They are at a loss - the PA came with, well - ummm, if you feel it’s necessary - contact your neuro team - I asked her if she seen anyone with a AVM prior to me - she said, “this is the stuff I only got to read about in text books”
And, yes - strange feelings, I call them the “new normal” for myself
Just like yesterday, drank a coffee - didn’t eat much, work was busy half of the day. As soon as I got done for the day, I just felt like I was in a daze - that lasted till I went to sleep
Like you, the only planned follow up was about six weeks post op. As I’ve said to you before (but now for Aroha’s benefit) I felt especially weird in the head at about six months and went to the doc. It took until 12 months to be seen and 18 months to be cleared and during that time it ebbed and flowed as to how weird things felt.
After the 18 months and scans that they persuaded me were “all clear”, I decided to just move on.
I’m sure I get the very occasional weird feeling these days but very mild and very rare. I’m sure coffee wouldn’t do me any good, so I’m decaf only these days but you can find decent decaf if you try.
He’s okay now. I think it was just one of those moments where it’s not really a big deal but the brain tells you otherwise. But yes we are always prepared to go to the E.R if necessary. I pray never!
Benny is on Levetiracem (Keppra). His doctors and neurologist haven’t said anything about him stopping the meds. He hasn’t had a seizure since. And this is where i get frustrated with the health system here… we seem to be the one having to chase up on follow ups rather than them organising it for us.
He had his first angiogram since embolization last September. They said its looking all good. And that was it… We haven’t heard from the hospital regarding a follow up. We don’t know what the next step is.
Yes i always remember what your told me a few months back about your journey and I always have to remember that it’s only just been over a year.
My hubby is so positive tho which helps although i know he’s struggling sometimes. This site is so awesome because i get to relate to him what other survivors are going through and that we’re not alone in this.
Thank you for your positive thought as always! I hope you and your family are well!
Man, that’s like the health system here too. We gotta do the chasing!
But as they say the squeaky wheel gets the oil. So we need to squeak louder haha
It’s good that you recognise your limits tho. My hubby is a very hard working man but now he recognises that he needs to take things easy at work and try’s not to stress too much.
I hope your recovery is all up hill from now on and you get your follow up soon!
Sugar gives Ben a headache now. So he stays away from them. Now I have the challenge of finding sugar free recipes! But again, its good on your guys part to be modest about it and avoid what’s not good for you. Well done!
Not hijacking you’re thread- just mentioning it here so you know understand my frustrations with the follow ups
I understand the frustration with no follow ups which I see is quite common but I’m frustrated with the exact opposite. I have a contrast mri or CT head scan every month and a full angiogram 6 months post surgery (which i cancelled first 1 - going next year) and a full angiogram every 2 years for the rest of my life… very excessive imo. Mine is apparently completely obliterated so all that cancer radiation and stroke risk, slicing my femeral artery open so often and other risks with angiograms to check if its still fixed… I’m almost where Richard’s at… if the do the Anglo and I’m all good I might just leave it and forget it for a long time and just live happiest life I can unless I feel weird (yes it’s often a silent killer but I don’t like all the risks with all the follow ups)
I was trying to explain it to a friend who had heart surgery as they didn’t understand why I cared about so much follow ups… so I explained it like this, imagine you had your heart surgery and it was all fixed and they said now we going to constantly scan you and put you at risk by going back into your heart often for lifetime to see if it’s still fixed… They said oh no I wouldn’t like that lol
I can’t fault the system here for no follow ups, they are great and I understand they need to check if it’s still all good but the health systems need to find a happy medium between no contact at all and treating it like having a bite to eat and doing it constantly
Also, I cut caffeine completely out, no coffee, no Colas etc. Since i was a huge caffeine addict, i weaned off over a few days to minimise the withdrawal headaches I got over a few days
I’m on a low salt diet but I struggle with cutting sugar out… If you find any good sugar free recipes… please pass them on
I do it occasionally but I don’t really remember how it affects me. I’d say tendency towards a headache but could just feel a bit weird and spaced. Can’t remember
Wow, that’s A LOT of follow ups! Where are you based if you don’t mind me asking? It’s like one extreme to another isn’t it?
We are at the same boat as you on follow ups I think. No news is good news kinda thing unless Benny feels real off then we’ll do something about it.
Since his angiogram in September he hasn’t experienced severe anxiety which is good because it means that he’s finally able to let go and move on.
He always says we’ll cross the bridge when we get there.
Does caffeine give you headaches? I will share a no sugar recipe when i find one!
which I see is quite common but I’m frustrated with the exact opposite. I have a contrast mri or CT head scan every month and a full angiogram 6 months post surgery (which i cancelled first 1 - going next year) and a full angiogram every 2 years for the rest of my life… very excessive imo. Mine is apparently completely obliterated so all that cancer radiation and stroke risk, slicing my femeral artery open so often and other risks with angiograms to check if its still fixed… I’m almost where Richard’s at… if the do the Anglo and I’m all good I might just leave it and forget it for a long time and just live happiest life I can unless I feel weird (yes it’s often a silent killer but I don’t like all the risks with all the follow ups)
