Life after DAVF Embolization - The mental battle

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Hi All,

Newbie here. I’m very grateful to have found this community as I’m feeling quite isolated In this discovery and life post embolization.

I am very early into recovery, it will be 2 weeks this Friday since my Embolization of my grade 3 DAV Fistula on my brain. (words of which I’d never even heard of until now!)

It all started with what I thought was a hangover/migraine and when it didn’t improve I went to hospital and they discovered I had a bleed on my brain, which then led to more tests and scans and the discovery of the fistula, and then treatment the next day. It was a very intense week, things I still don’t feel like I’ve processed and I’m struggling to get my head around it all.

I went from one Saturday living life as norm, to the following Saturday being 1 day post op, told I’m not allowed to drive, I’m off work for 6 weeks minimum and that I need to rest!

My main ask, is for any support and guidance on recovery and dos and don’ts. I was given 6 weeks off work, no driving, no weight lifting but told to return to everyday life. How?!

I’m petrified I’m going to drop dead every time my head hurts more than usual. I’ve lost all sense of independence and I’m feeling anxious to even go outside. I just don’t know where to begin!

Everyone has been incredibly kind, but all I hear is “you need to rest” but I cannot take another day staring at the walls. I need to get moving but what’s safe? What shouldn’t I do?!

Thank you in advance for any support or help, it’s much appreciated, as you can probably tell from my post, I feel a bit all over the place!

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@Sophia

Welcome to AVM survivors!

I’ve realised this morning that it is exactly 10 years today that I signed up here. I had had a diagnosis of an AVM in the back of my head a month earlier and was waiting to go for my first MRI. Fortunately, I didn’t have a bleed, so I was further down the queue than you and mithered my way round to April 2017 to have an embolization with PHIL glue. I had three weeks off work, a doc who was convinced that he’d blocked it all 100% and the same instruction: “You’re all fixed: resume normal life.”

At about 8 weeks post op, I had a repeat angiogram to check that I was indeed 100% occluded and the response from that was the same but honestly, I felt anything but “better”. I could originally hear my DAVF and while the embolization had got rid of the whoosh, whoosh of blood flow each second, I had other noises going on and I also found I had some scintillating scotomas. Things took a while to settle down. If you’ve had a bleed, you may well be less well than I was: do you have any symptoms that the docs have attributed to the bleed?

I had three weeks off work altogether – 2 weeks sick and a week holiday and then was able to resume work ok. I found that ok but there’s a lot more healing to be done.

At about 7 weeks post op, I played badminton with my son: “resuming normal life”. No, I think that was a big mistake. I don’t know if I did myself a mischief but I’m sure it was much too intense a return to sport. I went back to the gym in about October after the embolization in April and doing the exercise felt great but I very quickly had a bout of dizziness which propelled me back to the doctor. I think basically I overdid things by going back to normal life too quickly.

Equally, I think it is important to look forward with your life rather than back. That you’ve had a one- or two-week revolution is difficult to have and to move on very quickly but at some point, the forward focus is a good one: it isn’t good to get hung up on what has happened. You need time to process it and then move on but the forward focus will be the right one at some point.

Meanwhile, stay out of the gym, don’t do anything strenuous or dashing around like badminton. I’d say things like walking are probably the best: perfectly good exercise, perfectly possible to get out of the house and into nature hopefully, even if you’re in London, getting out of the four walls is important. Maybe take up a hobby to stave off the boredom.

Welcome to AVM survivors! It’s great you found us!

Richard

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Thank you so much for the response Richard.

10 years ago today feels wild. It goes to show how many lives can be affected at all different times, all over the world!

It feels incredibly overwhelming to have gone through all of the tests/scans/procedures to then be told “resume everyday life” but from reading others stories on here, it feels that seems to be the advice given often. I need more details than that, and I feel that every case is different.

prior to being admitted to hospital, I had zero issues what so ever Fortuantely. I had headaches every so often but they were often resolved by lifestyle changes, such as less alcohol or caffeine and more water! Since coming home, I’ve had issues with my ears, lots of ringing and everything sounds “robotic”. I’ve spoken to the nurology nurse and she has said to keep an eye on it. When I asked about life post op, everyone just told me the headaches will take a while to go as the blood leaves my brain.

This is my concern of going back to work and gym and doing myself more harm. The way I currently feel when I first wake up, I can’t imagine going back to work anytime soon. (I’m a pre-school teacher so lots of stress/noise all day)

I went for a short walk yesterday to collect my daughter from school and that felt like it wiped me out when I got home. But it was a very loud and busy environment and with the auditory issues I’ve got, that seemed to make me feel more wobbly/dizzy.

I am incredibly grateful for this community as I do feel that no one fully understands, which makes this part even more frustrsting.

I’m hoping to discover a hobby I can take up. I love reading and learning new things but anything to mentally exhausting doesn’t last long at the minute.

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You’re very early post op and post bleed. I think everything you’re experiencing you should expect to experience, and having had a bleed, that will be affecting things as well.

So, the key thing is to take life easy: you need to. Getting better from this sort of thing — even if it was done with a tiny cut in your groin or your wrist and a fine catheter tube which feels like it should be very uninvasive — actually, it takes a long time. I guess talk to your GP about your wellness to get back to work. The brain fog and fatigue are common obstacles that can take a long time to go.

I was ok at three weeks – good enough to get on a bus and go to work in an office and get home again. I often got a lift from work colleagues. But I don’t think the badminton did me any good and in August 2017, I took my mum to the Proms by car from Leicester and back again, same as we had done for years before. I got through it but it was also too much to take on: it was too early to do a long day like that.

Honestly, to get back to “good” it’s going to probably take you a year. It might be less. It might be more. It took me two years to get back to being near-perfectly good. Don’t be disheartened by how long it takes: you will get better.

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Yes I’m trying to be patient, but I’m struggling to find the balance between rest and moving forward. And as much as I appreciate the help and quick intervention I had, I feel like I’ve been sent back home without much information or guidance on what to expect.

I’m trying to think of hobby’s or activities I could do that will help keep me motivated, it’s a struggle to get up and out of bed without much purpose.

It’s good you were able to get back to work so soon, although I’m sure that came with its own worries and fears. I think if I was in a different job I’d be keen to get back sooner. But the thought of returning to my current job is quite overwhelming.

Yes I worry that the only way I’ll know if things are too much is when it’s too late. I know I need to take it a day at a time, but the idea of spending another 5 weeks at home is mind numbing. I need something to work towards. But I also feel incredibly guilty for feeling this way when there are people way way worse off than me, I’ve come out of this incredibly lucky to just be suffering headaches and hearing problems.

Thank you again for the response and the support.

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Maybe think of it a bit like a trial of retirement. A lot of people find retirement difficult: you lose daily access to work colleagues or customers and if you’ve not thought about retirement before you get there, you can go into the void, have no focus and no structure. You’ve found yourself in the same void.

When I approached retirement, I looked forward to having time to get fit; I wondered how I would deal with everyone else going out to work and being left alone in the house; and I decided I needed something in the week that was for me. My selection for retirement was to learn to paint (and draw). So I signed up for a beginner’s art class once a week and I used to go for big walks in Leicestershire’s main park, Bradgate Park :heart_eyes:

The good thing is that I’m interested and motivated to give painting a good go, it’s creative so you get something tangible out the other side, it’s sociable so going to a class introduces you to some new friends, and I seem to have got on with it ok: I’m not in the bottom half of the class.

You’re far too young to think about retirement but it’s the same problem: if you’re going to be isolated and less able to do what you normally do, think creatively about what you could do, what you’d like to have a go at but don’t normally have time to do, and ideally get out of the house to somewhere nice on a regular basis. It takes a bit of determination to create some structure out of the void but it is good practice in resilience, I think.

These are my ideas, my thoughts. Don’t feel you must do such things: I’m just trying to give you ideas in case it helps you to get out of the rut.

Very best wishes,

Richard

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Welcome from me as well! was a gamma knife recipient 6 months after my AVM was discovered do to a bleed and a hospital stay. I was off work for over three months after the bleed. The only activity I was allowed initially was to walk, no strenuous activity, no weights etc…I was able to walk only short distances and was exhausted, so I would go for short walks multiple times a day. I slowly built up the distance and ended up some days walking 15 km on 4 or 5 separate walks. I was super sensitive to light and needed sun glasses outside all the time, and even wore them in the house when first out of the hospital.

After a follow up my neurosurgeon gave me the green light to start weights again, but only light, nothing heavy. Sop i started doing high repo, low weight and again as my head would allow. I was cautious, but it did keep me occupied and I started to track the sets as I wished to show small increases each day. I found this really kept me motivated.

Slightly after three months time I has another follow up where the decision to go for Gamma Knife over craniotomy was made in consultation with the neurosurgeon. We discussed my activity as well and at that time advised to resume normal activity, but no sky diving! That part was funny as I do not believe in jumping out of a perfectly good airplane! Three months later after GK, i received the same advice, back to normal life as much as possible, knowing some days the energy wouldn’t be there.

I didn;t push the intensity beyond what I was advised by the Dr. but certainly made the best of the activity, and it sure helped to pass the time in a positive way. I will say for several monhs the times I felt the best was was while cycling, no idea why, maybe a combination of where my heart rate was, the effort level, and the great feel of the breeze.

This worked for me to keep my activity level up, limit my time sitting around staring at walls, but I always stayed within the guidelines from my Dr. Take Care, John.

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Thank you both for sharing, it really does help to not feel so alone.

I think it’s frustrating because I’ve lost count of the amount of times I’ve wanted to do things or try new hobbies and I’ve just “never had the time” and now I have all the time I could ask for, but physically and mentally don’t feel I can do much.

I really struggled with being on Maternity leave too, and it feels similar with everyone else being at work all day and I’m stuck at home, although this time I don’t even have my daughter here to keep me busy as she’s now in school. Although I appreciate that’s probably a good thing given I need to rest!

That’s Funny you should say that John, as I’ve actually jumped out of an aeroplane before and I’d do that again in a heartbeat!:rofl:

I will try and find some form of structure and plan my days a bit more, I think the priority is getting myself out of this slump and moving out of the house. But I’m finding the physical limitations giving me more anxiety and nervousness.

I’ve just gone to pick my daughter up from school and the auditory issues of feeling like I’m underwater are making me feel almost drunk like, and I’m losing confidence with being out the house before I’ve even got out properly!

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Welcome! I had a DAVF embolized in March of this year and then had a bleed 2 days afterwards - so the other way around to you! I am back to work now, and clamored to get back to work within weeks, like you. For me, recovery meant getting back to as normal as possible as quickly as possible! However, I found fatigue and head pain/ pressure debilitating and was sapped of strength just going for a 200 yard walk initially. I also had verbal issues - using wrong words and word retrieval Issues, aswell as sensitivity to light and loud sounds. I work in a school too, and ended up taking 4 months off. I’m back now, and very pleased to be so, but the fatigue is still problematic (albeit less so). In the early days, to try and distract myself from wanting to get back to my normal, I decided to give myself a project - brain health. I researched foods, exercises, did speech therapy, went out on walks and tried to establish a new routine. It helped with the time off I think. Even now, everything continues to be attempted via gradual exposure! This has been helpful in school - the noise of meetings, corridors and lots of stimuli has meant I’ve exposed myself to it gradually to develop stamina. My brain seems to slow if it faces too much challenge otherwise. I am due to go for a cerebral angiogram in a couple of weeks and I will be pleased to see how everything is working now. I’m wishing you all the best as you navigate these early days. Give yourself grace if you push yourself and find you’ve done too much - your body will tell you. And try and settle with this new chapter as it won’t last too long hopefully - the kinder to yourself you are will mean an easier ride I reckon. Sending all the best xx

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Thank you for sharing your story.

It sounds like we’re quite similar in our approaches. It’s also interesting to hear how you’ve found returning to that working environment.

I’ve decided that I need to throw myself into something, or some kind of project to distract myself from “recovery” and try and find a new normal. Taking on what both Richard and John have also said, trying to find that way forward with also taking things slowly.

I’m trying to give myself time to adjust, but I struggle with sitting around doing nothing, that’s doesnt feel very productive in healing! But I’m trying to be patient :see_no_evil_monkey:

Thanks again everyone. It’s been incredibly helpful hearing your stories.

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I think a project that keeps you busy or needs some thinking or planning is good. I was going a bit mad during the time needed to wait for surgery and I was worrying myself to bits with the wait as well. I decided that my project – to keep my brain busy – was to make a radio signal synchronised digital clock!! Yeah, ok, so I am crazy.

I’ve never successfully completed an electronics project before other than a child’s kit and following close instructions. I’m very pleased to say that I had to design a circuit board, buy the components, wait for them to be delivered and then solder things together, rinse and repeat as I discovered problems with my design. It really gave me something to think about and to that extent, I think it helped, so I recommend something suitable for you that maybe requires you to think a decent amount. I don’t think you want something that you can do that leaves your brain free to wander.

Very best wishes,

Richard

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I think this is going to be the way forward. I feel like I want to throw myself into a new world of learning, and understanding. I want to understand what exactly happened in my brain and why. Maybe that’s an another issue I need to tackle all together :see_no_evil_monkey:

That’s very impressive that you took on that project, that sounds really fun. I struggle with following instructions and projects that need focus as I’m very much “go go go” which is probably why I’m also struggling with sitting still and ‘resting’

I’ve just had another therapy session so I’m hoping they will help me moving forward to process everything.

can I ask if anyone else had auditory problems post embolisation? I seem to have developed hearing issues in my left ear mainly (fistula was right sided) and it’s worse when I go outside or go for a walk, everything sounds robotic or distant. And if it gets too bad, it makes me feel off balance. I’ve asked the nurse about this who said to keep an eye on it, but wondered if anyone else had the same? Or similar.

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I wanted/needed to understand enough about these things to rationalise with myself about what the future held, as I was waiting between diagnosis and treatment. You’ve not had that gap, so it doesn’t surprise me that you’re doing that sort of thinking now.
I do think we have to process what has happened to us, so engaging in therapy that helps to do that is also a good idea.

As DAVF patients, we are a bit different from other brain AVM patients and the ways of assessing our AVMs, the apparent root of them, etc seems a bit different. If I look back (and I half remember saying this, so I’m not altogether surprised) I can see that one of the other DAVF patients and I were both feeling full in the ear. I think @mike_az_21 might also have had hearing issues or tinnitus post op as well: I think tinnitus is not uncommon. I have had tinnitus for perhaps 30 years from other causes, so I’m not the best judge but I am sure mine got worse post op. Two weeks is really very early: everything is still very upset in there, so “keep an eye” is good advice. It may well get much better.

Recovery isn’t especially linear though, so don’t be wholly perturbed if you appear to take a step back from time to time. Talk to the doc about anything going the wrong way but it seems often that recovery takes a step back every so often.

Do you know whereabouts your DAVF is? How close is it to things to do with your ear? That it is opposite side might mean it is to do with sound processing rather than hearing itself.

The electronics idea came from a projects book that I had bought my teenage son to create a “binary clock” – one that shows the time in binary rather than decimal – but I changed it to listen for a long wave radio signal from Germany because the project didn’t have a means of setting the time and I thought it would be more interesting, keep my mind from being too free to think about surgical risk or stroke risk!

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Yes I think I’m pulling myself out my void of self putty and starting to pull myself together and look forward rather than backwards. But I do have this overwhelming need to understand exactly what happened and what it means. I think for me that will help me process what happened too.

Yes I still don’t feel like even the doctors/surgeons who treated me fully understood the cause or why this happens which at the time didn’t help me either. I’m a very much need to know all the details!

I think also because auditory issues wasn’t flagged as a possible symptom for me or wasn’t mentioned at all so I’m struggling to understand what’s to be expected or not. But it’s incredibly helpful to hear from you guys and your experiences. I really do feel that finding this community has been quite the mental lifeline for me. I will be forever grateful for your responses and sharing your experiences.

I do also forget that I’m still only 2 weeks post op tomorow, so yes you’re right it’s still quite early days. I need to slow down and be patient with myself.

I went to my therapy session today and got the bus back from the local high street and walked the 10 mins back from the bus stop and I feel quite proud of that today, considering how I felt even a week ago. I’m taking that as a small win. I’ve found the more I stay home, the more anxious I am to leave the house so fingers crossed I can keep progressing there.

My actual diagnosis is - “Diagnosis: Cognard grade 3 dural AV fistula - right high frontal parasagittal“ I’m still unsure what any of that means!

oh really? I’d love to have that kind of engineering inquisitiveness! I love to read so hoping to get back into my books but I’m struggling to focus on the story at the minute.

on a side note, I understand this is quite personal so don’t feel the need to respond if you don’t want to of course. But how did you all find recovery sround your family? Close ones? I’m struggling to feel myself as it feels as though people are treating me like they don’t know what to say or do. And I know they all mean it with love and care but I think I’ll go mad if anyone else asks how I’m feeling or tells me I need to rest! :see_no_evil_monkey:

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Hi,

Oh, I’m still 100% - sorry for not being on here for so long - good to see Richard still on here

I just passed my 6 anniversary since my hemorrhage

Recovery has not been liner at all. It took me over 4 years to shake off most odd symptoms(random right side body numbness, strange head sensations, stroke like symptoms, etc.)

As far as tenitus, before this happened I didn’t know the meaning of the word. Now, at times I still get the slightest hum in my left ear sometimes(my dAVF is on this side). Before my hemorrhage I had very intense pulsatile tenitus & after the procedure it turned into brut, which seems similar to me. It was an awful drone in my left ear. It got quieter as time passed. At first it was like sleeping next to an electrical transformer.

Give it time, it looks like we’re a similar age of when this happened - I was 39

The first year or two post procedure were fairly rough.

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:clap:t3::clap:t3::clap:t3::clap:t3::clap:t3:

Exactly! Well done!

It doesn’t matter that the steps seem small: the key thing is to take those steps and you’ll get back into the world.

Cognard is one of the methods of assessing a DAVF as to whether it deserves intervention. Grade 3 I’m sure is “important to act”! I was never told mine but from what I was experiencing, I decided I was 2a+2b. You can find more about Borden and Cognard classifications in our AVM101 category on the home page.

This tells you whereabouts it is in your brain. It’ll be flowing into one of the sinuses of the dura mater, one of the meningeal layers. Frontal is pretty obvious, so it’s somewhere near your forehead but it’s parasagittal so it is close to the divide between left and right hemispheres of your brain. The big, big draining sinus of the brain is called the sagittal sinus and it runs over the top of your head, dead centre from front to back. At the mid point of the back of your head, it splits horizontally into the two transverse sinuses and then they flow into the sigmoid sinuses which are S shaped and wiggle past your ears before becoming something else that flows back to your heart.

It seems a long way from your ears but much closer to that communicating connection between left brain and right brain. If you’ve got interference going on with your hearing, it might be more to do with some impact on that communication. I’d definitely talk to the hospital about any changes that occur.

I think I had my crisis in the open! I tried not to have a crisis in front of my parents or wife or kids but I’m just so extrovert, I know my wife knew when I was doing ok and when I wasn’t :rofl: It would have been screamingly obvious.

They’re worried about you – probably very worried – and they don’t know how to handle that any more than you do. I think it is typical that people fail to talk about stuff that really worries them. They don’t want to say anything that pushes you into places you don’t want to go and they probably don’t want to think about anything like the difficult stuff themselves. Since I’m already ridiculously open about how I am, I was very open about it. I think I was probably most open about it with colleagues and friends at work. I know that surprised and shocked some of them but it meant that we could have the conversation. Most of this was while I was waiting for treatment rather than afterwards, though friends asked me about how I was doing for years afterwards but only when I would refer to it.

From hanging round here for the last ten years, I can say that I think others will tell you that often non-patients just don’t understand: they sometimes brush off worries as unnecessary, unreasonable: “but you look ok” feels typical and that can be part of the problem. Any hidden illness is less well understood by people. That it is rare and nobody’s heard of it makes it makes it even less well understood. My boss obviously googled AVMs and decided to tell me what she’d learnt by doing so. The tidbit she decided to share was that most AVMs never go pop (but I’d say most AVMs don’t make you so dizzy that lying flat in bed is like being on a fairground ride). Thanks!

Talk to your counselling person about it: how to help people to help you: they may have ideas I don’t know about. For me, be open about it to someone. It might be best not being your partner or your mum but if you’ve got a good friend, you’ll find out how good they are. I think talking to parents and partners is important but they don’t necessarily need the full guts-out version. If they try to talk to you, talk to them openly, comfortably about what you’re going through – if you can. You might need a bit of processing time before you can be as open as you might.

These are my thoughts. Remember, I’m just a patient like you.

Very best wishes,

Richard

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Looking up Type III, it appears to be draining into subarachnoid cortical veins rather than directly into the dural sinus.

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Thank you Richard, that’s really helpful. Especially as when I try and google things, I get more confused!

I need to get my head around it all bit by bit I think.

I also realised yesterday that I only took 1 lot of painkillers first thing, I didn’t have my usual doses throughout the day! So I’m taking that as another small win.

I thought the walk and getting out the house would make me More tiered but I’m now struggling to sleep at night. But it feels like that struggle of not having used my body or my brain enough to wear me out. I’m so desperate just to get back to work :sob:

In regards to family, I think we’re pretty similar in the sense of my husband probably knows when I’m having a good day or bad! And I’m also a complete open book, so when people ask how I am, I’m open and telling them that I’m not ok, I’m struggling with it all, and I sometimes think they then struggle with what to do or say to that. Everyone expects the classic “yea I’m fine” and that’s not me. I will tell you every little detail you ask about :rofl:

I definately feel that since finding this community, it’s helped me to feel a level of sanity that I didn’t have because I feel understood here. Not brushed off or excused, but listened too, which i think is really important when you go through something like this. And it then gives me space to be more patient with friends and family as I know they don’t fully understand and maybe never will.

I’m starting to feel like I’m slowly getting back to some new normal, but I’m still petrified that I’m going to drop dead if I do the wrong thing or move too fast or too sudden and I’m hoping that eases with time.

I’m going to keep an eye on my hearing and I’ve been journalling most days so hopefully that helps me keep a log of the hearing issues to see if it improves.

I feel a lot lot better than I did 2 weeks ago! This time 2 weeks ago I was being prepped for the embolisation, even that feels surreal at how fast that time has gone.

i think I’m paranoid about a step back in progress as I feel like I’ve had a couple of small wins the last few days. (But i think that’s my negative attitude always coming out!)

I hope you’re all doing ok and have some lovely weekends planned.

Thanks as always for the support :raising_hands:t3:

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You sound like you’re making good steps. It’s really good to hear.

Always feel that you can come here to chat or shout or whatever: we do get it.

In regard to exercise just keep it gentle to start with. Walking is first class exercise, very underrated. Recovery is going to take months, so you’ve got to allow yourself to slow down to walking pace for a number of months: you’ll not be going backwards by doing so, you’ll be making tortoise-like progress forwards.

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Hi all,

Hope you’re all having a good weekend.

I’ve struggled this weekend, I feel like it’s so hard to do things that don’t engage your brain! I’ve also just entered a very stressful time of moving house, so that’s adding lots of stress at the minute that I’m trying to keep at bay!

I’ve been told by the nurse to get my ears checked, so I guess I’ll go to the pharmacy next week to see if they can help.

I’m feeling resentment towards to DAVF, as ridiculous as that sounds. But unsure if anyone else has felt like this? I can’t even enjoy music at the moment because everything sounds robotic/runny so that’s frustrating.

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