Symptoms post embolisation

Hello,

This forum has been godsend in the past so I am relying on you to help, advice me this time too.
My husband had his second embolisation, successfully. Although they planned to go in through a puncture in the skull, they managed to emboli sae through the artery.

He had his 3 month angio on Dec 15th, bloods done and was told he was fixed!

Fast forward, we decided to travel as tickets were booked and husband felt fine. Since a week he has palpitations - on and off.

Is this common? Should we head to a cardiologist to check? His ECG, was normal in September before embolisation so we are concerned.

Any thoughts or pointers will be most helpful.

Thank you
Shuba

Did you/he fly?

I still haven’t, even once since my embolzation.

It’s way above my pay grade to say what it is. Depending on feeling, I’d say possibly go see his PCP or if it seems too odd, go to the ER(an, oh too familiar place for me)

I wish em luck tho

Nothing is exactly “normal” after these procedures

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Hey Shuba,

Common? I’m not sure I’d call it ‘common’, But yes, I get these oddball palpitations too, which are fairly intermittent. I had an ECG and the cardiologist prescribed me medication which has it fairly well managed.

I had a craniotomy, and I too was given the ‘all fixed’ speech, only it wasn’t and I’ve required a few follow up procedures to get things to a point of ‘manageable’. A few years ago the wife and I travelled to the UK and whilst there we went over to mainland Europe. The long-haul flights, Australia to the UK, I had no issue with, but the short flights within Europe were chronic bad. It was my theory that with the long-haul the pressures within my skull had time to ‘normalize’ and maintain that pressure change, but with the shorter flights, no sooner were we up then we were back down again with no time to normalize and the sudden change was nasty bad. Now in saying this, medication and rest brought it back down to manageable and the following day all was fine.

Being that your husband has had a previous ECG, he has a reference point, so having another will be able to gauge any changes against that reference point. Even if it’s just for your own peace of mind, it can’t hurt to have another ECG. Like me, it could be a simple case of taking a medication once a day.

ABSOLUTLEY. One millimetre to the left or right can make a world of difference when it comes to neurosurgery. For your own peace of mind, I’d recommend getting it all checked out.

Merl from the Modsupport Team

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Thanks, we have booked in for an ECG. The spikes started during christmas which we attributed to heavy carb ingestion. We are both on keto diets. We will see what the cardiologist says.

Thanks for sharing your experience. Being told all was ok and he could resume normal life emboldened us to travel. Called the INR nurse who said they were unrelated to embolisation or angiogram. :roll_eyes:
Interesting observation about short flights and long but he had palpitations on long haul-and short flights so not sure if it is related.
We will see what the cardio says.

I flew about two months after gamma knife, I was a little hesitant. The point that made my decision easier was being told that an airplane pressure is similar to living in Denver, providing all systems are working! I’ve yet to be in a plane where the masks dropped. I believe this to be accurate and never would be worried about going to Denver! For me the biggest concern was insurance as I’m a Canadian and went to Hawaii, so I bought extra. The activities I was told to avoid were scuba diving and sky diving. This was related to brain stuff only though. I have had an irregular heart beat in the past, and still do at times which is caffeine induced arrhythmia for me. Take Care, John.

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By no means was I saying that there was any relation regarding symptoms. I’m no dr and this all needs to be investigated by the people who do that sort of investigation ie A doctor. I am yet to hear of 2 neuro-patients going through the same thing resulting in exactly the same outcome. My heart hiccups were easily managed, my head hiccups… not so much. I have other symptoms such as tingles in my hands and feet, one sided numbness, visual distortions etc, etc, etc…what I often call my ‘oddball symptoms’. I’ve mentioned all of this to the neuro’s and the response has been 'Nothing to do with my procedure…It must just be YOU!!!" But upon talking to other neuro patients it turns out that these oddball symptoms aren’t actually that odd at all. In other words, other patients are reporting the same symptoms.

I have often related neurosurgery to opening up your computer and throwing in a handful of aluminium foil flakes. You’d have short circuits all over your computer system and that’s if the system ever worked properly again. In VERY layman’s terms, The medicos have disturbed those microfine brain circuits and this can cause ‘short circuits’ all through your husband’s system. How that affects him vs how it affects me could be miles apart but it can have an impact over the whole of life.

Personally (again), I think we can wrap ourselves in cottonwool to keep ourselves safe and not take any risks for the fear of ‘what if ‘x’ happens? what if ‘y’ happens?’ or we get on with life and manage the limits we live with. Keeping ourselves insulated maybe safer, but it makes for a very boring life. Make your plans, get the medical OK. Then follow through with your plans.

Merl from the Modsupport Team

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Like the guys say, we’re not doctors, so you need to take the appropriate advice. There are sometimes connections (or apparent connections) between cardiac stuff and AVMs – I can think of one member here as an example – but it is probably more likely to be independent of the AVM or the procedure.

What I can add from my own experience is that we somehow expect to be “well” within weeks of the operation but I think it’s fair to say that the experience on here shows that at best it varies very widely. 3 months or so post op is still early on my scale of feeling ok and I had a significant period of feeling dizzy and ill about 6 months post embo. It turned out to be nothing and I just needed to settle into normal life and give it time. However, things like this event he’s going through are worrying and stop you relaxing into it ok.

Hoping it goes well.

Best wishes,

Richard

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Hi Merl, Being an oddball myself, it’s probably not unusual to have an oddball symptom.
About 4 days ago I noticed that when it’s dark and I direct my eyesight to a side angle I have sort of lightning flash.
It’s not lasting or troublesome at this point.
Have you ever heard of such a symptom?
Thanks, Greg

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Heard of? Nope. Experienced? YES!!!
My eyes are like my barometer. I get dizzy, see super, super bright stars or zigzag distortions and the pressure behind my eyes is HUGE. Like my eyeballs are going to explode from my skull. At times I’m almost tempted to dig my eyeballs out with a teaspoon, just to relieve the pressure.

Another issue with my eyes is that others can see there’s a problem. I’ll often not admit I’m in agony, but my wife can read me like a book, she knows. I’ll tell her ‘I’m OK’, but she looks at me and tells me ‘Well, that’s a lie, just look at your eyes…’ One eye is closed up and the other is hanging out of my skull and as much as I try to deny it all. She knows. Damn it. I’ve spoken to the neuros about this, they denied any correlation and I was referred to an ophthalmologist. The ophthalmologist stated “…Well, you’ve had brain surgery… What did you expect?..” What I didn’t expect was ‘THIS’.

My last major neurosurgery, number 6, was in '13 and I still have issues with it all today. I get really frustrated with the medicos when they put it back on me, like it’s a choice. None of us choose to be in this position, but here we are.

Merl from the Modsupport Team

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@ModSupport @GregF @DickD @JD12 @mike_az_21 thank you all for your input. This is why I came to you because I learn that symptoms and reactions are as varied as there are people and managing post embolisation is a big balancing act.

Interestingly, my husband had 1 temazepam so he could sleep ( palps were keeing him awake) and this appears to have reset him somewhat.
We have a cardio appointment today but a part of me is beginning to think this might also be an anxiety reaction post surgery🤷🏽‍♀️ We will see.

Once again appreciate all your thoughts.
Shuba

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Personally, I think there’s a good chance it is anxiety-related.

Have a good day.

Richard

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And this could very much be the case. Stress can affect us all in very different ways and the impact can be massive. Identifying a cause can make the whole process of managing it all a lot easier. The only way to identify the cause is to investigate and trial treatments and to keep it all well documented. The best way to do all of this is via your PCP in conjunction with your specialists.

Merl from the Modsupport Team

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Thanks Merl.

My husband is a terribly optimistic and positive person but I think this AVM has jolted him a bit. He has held up so far and now that he has been told he is fixed, is now giving in to his emotions. Just a guess.

The cardio doesnt seem worried - has recommended an ECG, prescribed Beta Blockers and relaxants for a week.

Xx Shuba

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It does jolt us. Us males can sometimes hide it all. Some can deal with it and move on, but somewhere in the back of our minds…it’s still there. For some symptoms can be chronic bad (a constant reminder), for others it can all be manageable.

Being optimistic isn’t a bad thing and some ‘can’ push on through, with my first neurosurgery I pushed through my recovery. It wasn’t an easy process, but it can be done. I ‘tried’ to push through after my 2nd surgery, just as I had before, but I pushed too hard, too soon. Something went ‘POP’ and I ended up back on the operating table. After that 3rd surgery recovery was a long, slow process. Just when I thought ‘Ha, I got this thing beat…’ it would up and beat me into submission with symptoms. I had to learn my new limits and how to manage around those limits. I had to learn to listen to my body. It would give me these odd signs if I didn’t listen, those symptoms got worse and worse.

If the cardio is OK, then just follow through with his recommendations, try out the medications. If they work, that’s a bonus. But if they don’t work or he has a reaction/side effects, inform the cardio. A simple variation of meds can sometimes alleviate these side effects. There’s a large range of beta blockers, so finding the appropriate form can be a bit of trial and error.

Merl from the Modsupport Team

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You are so right, Merl, about the process of acceptance and adjustment. I will definitely keep an eye but it seems that he is now taking these set of symptoms seriously.

So fingers crossed we will cross this hurdle too and move on to acceptance of the new “person” post AVM.

Once again appreciate your thoughts and fir sharing your own journey :pray:t4::lotus:

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