Thought it high time I gave an update on how I’m getting on.
Had my embolisation on 3 April. Came out of hospital on 5 April but I have headaches, dizziness, pain on the outside of my head and some occasional visual “effects”. See also Explaining Catheter Embolisation
The procedure was to embolise the DAVF in my right occipital and the doc also embolised the draining veins that are extracranial, plus unblocked my right transverse sinus. When I came round, apart from sore balls (I’m sure they gaffer-taped certain parts of me out of the way and then just ripped off the tape!) I had a good headache and I could hear an even louder pulse than before my op. A very healthy-sounding pulse but nonetheless a pulse.
Over the past week and a half, the head pain is less – I can now lie with my head straight up or on the right now, for a while. I managed to sleep a couple of nights on just one pillow! Hurrah! – the headaches are minimal, so long as I keep pumped with paracetamol at regular 6h intervals and the pulse I’ve either got used to or has faded. I’m due back after 6 weeks for a re-scan (angio) and we’ll see whether anything else needs doing.
However, I’ve got an interesting visual effect that is occurring less than once a day currently. I get a little blur which appears, turns into a raindrop, then splits into a wide “C” shape, complete with jagged teeth. The blur keeps all of the colours of the background, but there’s no way of “seeing” through it. It’s a bit like interference within the shape, or a frosted window. I haven’t found a trigger for it yet. It’s occurred in the back garden in the heat and the sunshine; its happened when being driven in the car on Thursday; it happened when I woke last night and had a drink of water.
The embolisation I’ve had was using PHIL rather than Onyx. I understand that PHIL is a bit more irritating than Onyx. If anyone has experience of a DAVF or PHIL and can share a bit of positive upliftment, please do!
I’m not wholly glum and I’m still convinced that my DAVF needed action but I’m either expecting too much too soon or I’ve got some side-effects that I wasn’t hoping for. Not the worst side-effects known to man, but disappointing, as I’m sure you’d agree.
Good to hear from you Richard. My embolizations is June 22 so I like so follow everyone’s experiences so I know what to expect. Hope it is a speedy recovery for you.
HI you say this ‘retrogade’ thing going o makes you feel poorly, how does
it affect you, what are you symptoms? I’m due to see consultant again next month and I feel a lot worse than I did 15 months ago when I last saw him was worried my DAVM had got worse
It is mostly the dizziness which bothered me, though the retrograde flow was present on the outside of my head as well as inside, so my head felt pressured inside and out and simple actions like shampooing, hair brushing and even sliding my glasses over my ears made me feel dizzy. I think I had large draining veins on the outside of my head, on the right occipital side, but reaching down to my neck. They became more tender as time went by.
I’ve read recently that DAVFs may be acquired, rather than congenital, so makes sense for them to change over time. I assume the issue is one of high blood pressure, some predisposition to an AVF and/or lifting too heavy weights / doing too much in one way or another.
The simplest test for mine was to use a stethoscope to listen for where an unusual blood flow could be heard. When I saw my GP in (I think) early March, I think she was shocked by how extensive the pulse in my draining veins had become and it was her report to hospital that finally triggered my embolization date.
Hope this helps,
Update on my progress… in the hope that it helps others. I’ve got some progress and some regress.
- my head is no longer sore on the outside: the extracranial draining veins which were PHILed are now comfortable enough to sleep on.
- I’m not taking any painkillers. I’ve stopped those for a couple of weeks by now, though I had a long day at work, sitting on uncomfortable chairs, having to look up too much and I resorted to the paracetamol again briefly.
- my “visual effects” have abated. I’m down to about one per week.
- I’m still dizzy. I’ve plateaued in terms of getting any better there, I may have got a bit worse. Indeed, I got annoyed the other day, blood pressure went up and I got extra dizzy, so I’m pretty sure further embolisation is needed. Any motion, such as walking or being driven in a car is mildly unpleasant.
- I can still get a bit dizzy shampooing my hair
- I can still hear a pulse at night.
Good news, I’m up for an angiogram in 2 weeks to review progress and we’ll see how we go from there.
Overall, I can say that post op, I’m so much more relaxed about my AVM than I have been. I don’t think it is fixed yet but I know what an AVM is, I know what it’s like to go through an embolisation and I can do these things. I’d like to encourage everyone else that embolisation is OK, not to be afraid of; and I hope to get fully fixed soon!
Lots of love,
Thanks for the update Richard, really appreciate it. The positive outlook has always helped me along and I wish the best news at your next angio! Thanks again, and take care!
Good luck Richard hoping for a great outcome for you.
so good to hear that it went well and let us know how your next angio goes. I hope you continue to feel better. Its tough with the Iodine and radiation used during I know my body does like it at all and I usually stay in bed for at least 2 weeks last time I think a month. But I have a severe allergy to Iodine -
I’m offline for last week and next week, minimum… the phone company cut us off! I’ll join back in when I can connect to the outside world!
Up for my angiogram today… actually not hoping for the “all clear” cos I still feel dizzy. Hopefully the doc will find a little something still to do…
Ok, so I’ve had my angio, seen the pictures and believe I’m all fixed!
Doc says I had a big fistula, not necessarily big in centimeters, but big in terms of the amount of blood flow being diverted, so he thinks I just need to carry on getting used to the new flows in all the right places.
That is fantastic news! I can’t tell you how happy I am for you.
Thank you! I really need to get into a new mindset. I feel like I only half believe the doc at the moment, so I really need to get into the fully believing space. He said he could see no physiological reason why I would still be dizzy, so it has to be in the mind rather than the vasculature. So… I’m going to go for it.
- Get comfortable post angio.
- Then have a sensible return to life as normal, with a positive attitude.
He did say it was quite a big fistula, in terms of the amount of blood being diverted, and if these things are aboriginal, congenital, then the top of my head (where I feel dizzy) may never have had the level of blood pressure other people are used to, or it may have decayed very slowly over the last 50 years and I’ve got used to a much lower pressure.
My dad went to the dentist some years ago and the dentist told him, either cough up several thousand pounds to get his teeth fixed properly, or take the lot out. Dad has had a “plate” since a motorbike accident as a young man, so opted for “all out” and some new plastic choppers. The funny thing was that when he had them fitted (a) he looked like Wallace out of Wallace & Gromit and (b) they were “too tall” – he felt as though there was too much plastic in his mouth: his jaw was being held open! Rather than pay the dentist to make a shorter set of teeth, he had a go at them with a file. Much cheaper.
When he told the dentist, or had a review of how he was getting on with them, the dentist laughed. “Actually, they were the right height but you’ve got used to a plate that was made decades ago and has worn down significantly over time, so the teeth in your old plate were much too short!” I assume it is the same with me. I’ve got a bit of “getting used to” to do.
Hope this cheers your day, too! It is great news!
It sure got my day off to a great start! Thanks.
The “visual effects” recurred again just once following the angio, so I think that was driven by the catheter going in and upsetting something. I dont think I’ve had an “effect” for a couple of weeks now; and before the angio, hadn’t had any for perhaps 3 weeks.
Hope this helps anyone reading up on how I got on.
I’ve had really good news today after feeling less sure that I was getting well enough. I’m still getting used to the new pressures in my head but I went to see my GP today, at the request of the UK driving agency and she said I was good to drive!
I’ve since spoken to the driving agency and to my insurers and I’ve gone from being unable to drive to being allowed to drive in the space of a few hours, when I was starting to feel a bit glum about still being on the “getting well” path. Apart from the sheer liberation of being able to go where I please when I please, I am just SO looking forward to listening to my favourite music in the car on the way to and fro.
So… please let me celebrate a bit! I didn’t really think this was coming! I’m conscious there are many here who can’t drive and I know how that is. I would also say that the buses and trains have served me very well, as have some bus apps and a famous mapping app.
But it seems a lovely thing to be free again. I hope it persists but
Thanks everyone for helping me through the tougher times!
That is fantastic news Richard! I couldn’t be happier, a big moment in these journeys< and I don’t mean road trips!
Wonderful news Richard! Congratulations!
… update further… I’ve been reading “Migraine” by the late Oliver Sacks. Not finished reading it yet and I would say it is quite a technical - medic oriented - book, not intended for easy reading but I’ve discovered that the visual effect I had was a scotoma. I think a scintillating scotoma; maybe a negative scotoma. In the book, there is an almost exact representation of what I could see. Quite remarkable to find such a thing!
Of the other things that I’ve read in the book so far, the most interesting is that Sacks separates migraine from epilepsy and both of these from similar effects driven by some abnormality. Thus, he would clearly distinguish between a “normal” Migraine (my words) and one driven by an AVM or tumour or any other abnormality.
The one thing that might help us in this forum is Sacks’ view that migraine aura are almost always bilateral – that the sensations may start in one hemisphere but almost always transgress into the other hemisphere. His view is that any apparent migraine that doesn’t traverse the body should be treated with strong suspicion. In other words, there may be some less benign thing driving the apparent migraine, like an AVM.
Equally, whilst I had a scotoma, it was not – by Sacks’ definition – caused by migraine but by some other factor.
I hope this helps one or two people…