Post Embolization Struggles

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Hi everyone,

New here. I have a davf that was diagnosed in June after nearly a year of doctors telling me it was stress. It was diagnosed as a grade 1 via a DSA in June but I had my embolization last Thursday and they said it had recruited so many new feeders and was now a grade 3. The embolization was with significant amount of SQUID. I had expected them to just close the meeting point but now I feel like my brain is just full of glue.

I am in so much pain post procedure i went back to the hospital to make sure i didn’t have a brain bleed and after a CT/CTangio/and MRI they say everything looks good. Steroids are controlling the pain but paracetomol and ibuprofen don’t seem to help at all. My PT also hasn’t diminished at all but I think that’s the because They were able to close everything except a couple of arterial feeders near the tentorium which was supplied by the Bernasconi-Casinari from the internal carotid artery. My doctor is suggesting following it up with another embolization but from a venous approach. She said she is worried about following up with Gamma Knife because of how quickly my davf grew in just a few months.

Needless to say I know I am only just a week out but feeling really discouraged with how terrible the headaches are and the amount of continuous pressure I am feeling. Does it get better? She said they closes 90% so I am having a hard time believing all of this pain and PT is just from the 10% remaining but I’m just not sure anymore. Any experiences (good or bad) would be helpful for me to understand more.

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Hi @ellery

Welcome to AVM Survivors! It’s great that you got a diagnosis and it’s great that it sounds like your neurosurgeon knows what they’re doing.

A week out is absolutely nothing in terms of recovery from any of this, so don’t be alarmed by being more poorly than you expected. I had a DAVF (I think 2a + 2b but was never given its classification) fixed with PHIL glue about 9½ years ago and I was pretty much just as disappointed by the noises I could still hear, the dizziness I still had and the headaches. However, I was working pretty much fine on paracetamol/Tylenol, certainly after a few weeks. You can see how I was at this stage here: My Update - Dural AVF Embolization - #22 by DickD

That you’re not 100% fixed means you’ve still got a bunch of erroneous flow going on. I’m not sure you should feel any better at this point: at the end of the day, the flows have all been changed but it is still not where it ought to be, so I’m not surprised you feel very odd. (Note: I’m saying this just from a patient who has gone through similar and who is applying a bit of logic to it, rather than any medical naus: I’m not a doctor or nurse or anyone with medical qualifications.)

My doc also made noises about doing a transvenous approach and I came away from my embolization with two holes in my legs rather than one, so I’m unclear whether he did two approaches in one sitting. While he was convinced I was fixed 100% both immediately after that op and again at the 8 week mark, you’ll see in the linked story above that I remained very skeptical.

So. Relax. Do what you need to deal with the pain. Talk to the hospital about any issues but I think there’s a good chance that everything is going the right way. It does take time.

When do you get embolization no 2? Because I think that’s the point that you’ll turn the corner.

Very best wishes,

Richard

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Thank you so much Richard. This is really helpful. I had peaked around this forum a bit before but didn’t go too deeply until after the post embolization struggles. My doctors really mentioned this should be about a week off from work and then that I would be back at it so this has all taken me for a surprise. I know there is still about 10% to occlude but I was expecting some relief after closing about 90% and instead feel like the pulse and the pain is much worse than before. From reading I see it was about ten weeks before you started to trend back towards normal? Can I ask when your pulsatile tinnitus went away? I am hoping I will have some further relief from this first embolization before getting the remaining ten percent if it doesn’t relieve everything. So grateful for the response and the tips. Wishing you well!

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Doctor mentioned taking about a month to heal and then trying embolization 2. She mentioned she’s not sure if it’s possible through a venous approach but wants to try that was rather than waiting for radio surgery because mine grew quite rapidly recruiting feeders in such a short time. I went from a cognard 1 with no reflux to a cognard 3 with significant reflux in just 3 months.

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Yeah, I feel mine was changing month by month, so I would feel the same.

I can’t remember at what point I lost the extra pulse sound. The pulsatile tinnitus went straight away but I gained a normal pulse sound that was very loud immediately post op. I decided that I probably had the proper blood pressure in an artery that had been somewhat starved and that was why I was hearing the pulse. I’d say the key step was to ignore it rather than listen to it. If you click on the dates next to my posts, it gives more detail as to when I wrote them. I used this place as my log.

I don’t think you can assess what’s going on until you’ve got it fully closed off. In my mind, if I had a hosepipe with five leaks in it and I only closed off three of the leaks, the thing I’d expect to see is that the remaining two leaks are squirting water out at a higher rate, not a lower rate, because the pressure is being maintained further along the pipe. How close this analogy is to an AVM, I’ve no idea, but it doesn’t make sense to me to feel that you should feel better yet. If those two leaks are really tiny, then the amount of water actually being lost may be very different from when all the leaks were there. It just depends on what’s left to do. 10% still to do feels like it’s reasonable that you still feel poorly.

I hope the plan keeps going the way you describe and you get a fix in a month’s time. That feels like the quickest way back to good health. :heart:

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Welcome @ellery!

I am very new to this forum myself and have found it incredibly helpful for support and level of understanding that I struggle to find from my friends and family. This community is amazing.

I am 4 weeks post embolisation today and I can’t even begin to explain the difference in how I feel today compared to 3/4 weeks ago, and frustratingly, everyone here is right, you have to be patient and give yourself time.

I couldn’t even see a future where I wasn’t in pain or didn’t have some kind of ailment, but it does improve. I think a great piece of advice from here was to keep looking forward, not back.

I understand you’re still due some treatment which I fully appreciate is still a long road for you. But please do keep us updated on here and reach out when you need to! You’re not alone.

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Can I also say that you two are the only Squid embolization patients I know. There might be another but you two are the first ones I’ve seen that term used by, so I think it’s great that there’s at least two of you and that you’re very much contemporaries of each other.

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Thank you so so much Sofia! This is encouraging. Can you share a little about your symptoms post embolization? I see Richard mentioned you also had squid and I haven’t connected with anyone who had a squid embolization. I’m so happy to hear you are doing better than a few weeks ago. It’s so nice to connect with others experiencing the same.

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I just read through your entire thread. Thanks for being so honest about your experiences. I also had a grade 3 cognard but didn’t have a brain bleed so I’m sure you’re recovering so much from that too. I am a middle school teacher so also worry about returning to work with the constant stress. I am sending you all the best.

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@DickD really? That surprises me. I’m not sure if it’s a newer technique? I thought it would’ve been a popular treatment as it’s less invasive being via the angiogram.

@ellery post op was really tough. I couldn’t hold my head up, I had quite a stiff neck so sitting up was a struggle. I also had a constant headache from the minute I went to hospital until around 2/3 days ago which was incredibly hard, it felt like it was taking over my life. That has Fortuantely decreased and I now get a headache every so often, but I find the headaches appear more so if I’m dehydrated, had too much coffee or sugar or worn myself out cognitively or physically.

I also had auditory issues with my left ear where it felt really blocked and everything sounded robotic! So I couldn’t even watch tv or listen to music because it was ruining it for me! Again, this has gone now and only comes back when it’s been too much, almost my brains way of telling me to rest.

I do understand how difficult it is when you’re so fresh out of treatment, because for me I went into a dark place quite fast, not being able to see a future without a part of this experience effecting me, and it really got me down. I never thought I’d be able to enjoy the things I used too, it felt like over night, my ordinary life had been flipped on its head and shook around, and in the blink of an eye I’d had my life/independence stalled. I was told no work for 6 weeks, no driving and no heavy lifting etc, and that’s tough.

I can handle the physical symptoms, but the mental battle is really something else. But as I say, the difference now compared to how I felt post op is something I couldn’t even imagine 4 weeks ago.

And Richard is completely right in that healing isn’t a straight line, you have good days and bad days and you have to listen to your body and rest up when you need to.

I’m a pre-school teacher and I was petrified of going back to work, I still am really, more so because I feel like I’ve lost all confidence in myself and my ability to be good at my job but I’m sure it’ll come back.

It’s really really tough to go through this, especially when in real life you feel like you’re so alone. But this community has been unbelievably helpful and supportive so just come back to us when you need us!

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You sound much better than you were. That’s really good.

Embolization had been around for a while – even mine with PHIL ‘glue’ was nearly ten years ago and there was nobody else on the forum talking about PHIL at the time. So I assume Squid is the latest development of the copolymer ‘glues’. I just thought I’d mention that you two are the first I remember reading about. (I think there may be one or two others but it seems relatively novel).

Keep getting better! (You will). Don’t judge what you can’t do at this stage because you’re still very early in recovery. While having an embolization seems like an uninvasive way of having brain surgery, it isn’t really uninvasive: it is changing the blood flows, it introduces a foreign component and a bunch of solvent. I remember reading at the time that PHIL was perhaps more irritating to the patient than its predecessor Onyx but that it came ready-mixed and easier / quicker to use in theatre, so the objective of PHIL was to make the theatre work easier, quicker. Likewise, Squid is aimed at improving on Onyx, principally around safety, I believe.

Looking on the internet, Squid sounds like it is perhaps longer in use than PHIL, so it’s not that novel, though the vast majority of embolization patients have had an Onyx injection: both Squid and PHIL patients may still be in a minority. The article I’ve found suggests that neither Squid nor PHIL were licensed for use in the US in 2021. That may have changed since but the US has been slower than Europe & the UK to adopt novel agents.

My point is that both of you have had embolization with an agent that potentially has different side effects from me or the majority of other patients on the forum. It may be that that the impacts you’re describing are normal for Squid. I know when I had my PHIL injection, i was surprised not to feel immediately “back to normal”. Its the most uninvasive method, surely? No. It doesn’t seem to be that way.

I’m sure you are both getting better but it takes time.

Lots of love,

Richard

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Hi @ellery I had a grade 4 DAF embolisation with Onyx in March 2025. My only symptom had been hearing my heartbeat in my ear, and I was shell-shocked after the op as I had 3 different tinnitus noises, a feeling of pressure and chronic fatigue … I felt so much worse! I struggled to believe I was fixed, but cerebral angiogram in Sept 25 showed conclusively embolisation was successful. Give yourself time and be kind to yourself. I am now back to a ‘new normal’ … I still feel some pressure and still have tinnitus but have stopped questioning why (most of the time anyway!) and that was the hardest part for me. Hoping you have a neuro nurse to talk to? Take care of yourself … one day at a time x

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Hi @ellery just wanted to check in and see how you’re doing?

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Hi Sophia,

Thank you for checking in. I am doing MUCH better. Not amazing but better. I am back at work this week and feeling a little slower than normal but it’s manageable. My severe pain has dwindled. I do have pressure and an awful sound in my ears still but I’m thinking it’s the residual fistula. I’m a little down emotionally knowing i need to go through another procedure right when i am starting to feel better but hoping it will all go okay.

How are you doing??

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Glad to hear you’re doing better! It takes time doesn’t it. I understand the feeling of returning to work, I went back for a few hours as a bit of a settle in session and came away feeling petrified of returning to work fully, which is next week! :grimacing:

I hope you have a good recovery next time round too, although it is very emotionally draining. Will you be having another embolisation?

I’m ok, feeling mentally down lately, a lot of stuff is coming up in therapy off the back of dealing with this recovery.

I’ve decided on a career change and will be training to be a therapist next year, I’d like to focus on working with people who have gone through similar, so it’s nice to have a goal and focus.

I hope you continue to feel better, but do be kind to yourself on those tougher days!

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You and I have so much in common. I have long been considering becoming a therapist but now I am even more interested in working with people who have chronic illness. Where will you do your studies? I feel like I am a few years out from the switch, just needing to save money again after all of the procedures and regain a bit of energy. i will say my first week back to school felt nearly impossible but everyday has gotten easier. I’m sorry you’re struggling mentally. Me too. I had cancer two years ago and i cry so much more post this procedure. I don’t know if it’s the isolation or the fear or what feels so much more draining. I hope you continue to feel better too! Take next week slowly.

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You’re both doing brilliantly. It’s hard and I guess it wouldn’t really help to talk about it being hard beforehand!

Personally, I felt that getting through my embolization felt more possible once I’d gone through the first operation than it would be for a second tour of the x-ray suite. I’d made it through safely and I knew more about what to expect, that I could get through it ok. I think I was more perturbed by the unknown than the known, if that makes sense. Sure, I had a big headache post op and my mouth tasted horrible and I was laid out like a wet rag but I’d done something I was very unsure about and I had got through it.

Keep taking it carefully and I’m convinced you’ll get back to being you.

Lots of love both!

Richard

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@ellery oh wow really?! Yes I’ve always wanted to do it but never had the umph to go for it, but something like this makes you realise life is too short to not go after what you want!

I’m looking to study in Canterbury, I’m currently in the process of moving near there from London. But like you, I’m financially buggered, I need to save up and get my ducks in a row, which makes this recovery even more deliberating when I’ve not been able to work and earn money, I feel like I’ve just been an absolute burden on everyone. But as much as I felt talking was incredibly important before this, post op and this recovery has been so eye opening to how much talking things out really help, and I think with something that’s so uncommon it’s hard to find the right support. This community has been an absolute life-line!

I’m so sorry to hear about your cancer. That’s tough, especially having this happen too. I’m so glad you’re feeing better though, and Richard makes a good point of saying that you’ll know what to expect second time around.

We will still be here for you second time round!

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I forgot about the smell and taste! Haha. Oh the joys

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