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Newbie with a DAVF


#1

Hi everyone,

Would just like to say thanks to everyone contributing to this forum, I’ve been reading for a couple of weeks, it’s nice to see I’m not alone and thought it about time I contributed a little myself.

Back in May I had a seizure (first and hopefully last!) when on a friend’s stag party and long story short after hospitalisation, GP, neurologist and then neurosurgeon with some tests along the way (CT, MRI, MRA & Angiogram) has led to the discovery of a Right Occipital DAVF (Cognard 4 according to my neurosurgeon) fed by multiple carotid and occipital artery branches with significant reflux of the venous surface of the brain.

Essentially, my neurosurgeon has confirmed that the risk of bleeding is high (around 8% a year) as it’s an aggressive fistula though on the bright side my DAVF is a good candidate for embolisation which has been provisionally scheduled for 5th September.

I had some general questions of those who have also been through something similar:

  • Have you considered seizure medication (I haven’t as yet and have a EEG on Tuesday)
  • Any Hospital / Neuroradiologist recommendations? It looks like I’ll be having my embolization at Kings in London
  • Any lifestyle tips to reduce risk of bleeding? I’ve seen strenous exercise / heavy lifting but my neurosurgeon has basically told me to carry on as usual
  • I’m having headaches and what feels like an increase in visual symptoms (floaters & flashes) but mainly struggling with the ticking time bomb fear of a bleed - any tips to put this back of mind (no pun intended!)

Thanks,
Scott


#2

Scott,

Welcome! I had a DAVF that I would say was quite minor when I first reported it (I could hear mine) but led on to what felt like a large area of reflux on my extracranial veins, so I know a bit about where you are.

I’m sure Kings is good. @corrine had her embolization at NHNN in London.

Lifestyle tips include cut out coffee/caffeine, smoking, chocolate, alcohol… anything that is a stimulant, just to take the pressure off. I found it helped for a month, maybe two, as my DAVF was busy getting worse.

Regards the ticking, just find other stuff to keep busy with. An empty mind is an overly worriable mind, so give it something to think about. I started a crazy project to design an electronic clock from first principles!! It needed plenty of thought.

Most people who are liable to seizures are on keppra. It takes a toll on you when you first start it but you get accustomed to it, I believe.

Welcome! Hope this helps,

Richard


#3

Thanks for your response Richard! I had already read your story here and it’s great to see, that whilst it wasn’t without its challenges, you seem to have had a positive outcome overall.

Thankfully I can’t hear mine though I do feel the headaches (and a pressurised feeling) are worsening though this could also be due to my increased attention to the symptoms since diagnosis.

From reading here many seem to have gone for the dedicated neuro hospitals (NHNN or Walton) and I suppose I’m at the point now of trying to balance if there’s a better option (though I have no reason to believe Kings to not be great) and also wanting treatment as soon as possible whilst I’ve not had a bleed.

Coffee will be the hardest for me to kick (had two already this morning!) though might be wise to at least cut down. It doesn’t seem to have any negative affect that I can experience anyhow.

It would be great to hear from anyone here who’s perhaps just had one seizure and their thought process to either medicate or not. I also suppose my EEG next week might help steer that decision.

Electric clock! I’m going to have to find something equally interesting/stimulating.


#4

I’ve definitely had a positive outcome. Getting used to the new balance of pressure / flows post op has clearly taken about a year and if you’re anything like me, it might not feel fixed immediately post op as your head is busy getting provoked by all the foreign material (I guess, depending on how much they use).

Definitely cut out the coffee. It’s a painful process (you may get a decent withdrawal headache) but it really took the pressure off for me and it basically spikes your blood pressure, so doing so should reduce your risk of anything really nasty happening. The doc I saw in A&E in Nov 16 was equally blunt with me. Cut it out. There is decent decaf out there. If the only thing you can find is rubbish, keep looking because it doesn’t have to be so.

I did actually make the clock and it works. The only bit I never finished was getting it properly into a casing. I made it as a “binary clock” that shows hours, minutes, seconds and got it to radio-synchronise with a long wave time signal from Germany. Required a fair bit of thought, perhaps a bit more than is commendable to others.

Definitely don’t be thinking about your current risk. The AVM has been there a long time and though it may be degrading a bit, I’m sure the docs will sort you out promptly if you need it. If you ever get worried, don’t put it off – go and see the doc. And if you have any sudden, severe symptoms go straight to A&E.

Very best wishes

Richard


#5

Good to hear Richard, would you say that you feel fully recovered (i.e. asymptomatic) or is your brain still adjusting? I also read that your embolic agent was Phil - do you know if there’s much difference between this and Onyx? It looks like mine would be the latter.

Looks like I’ll be searching out some decaf coffee beans as I just recently bought a bean to cup espresso machine ha!

Sounds like a commitment and I’ll be looking for something that I can also use to take my mind off things for at least the next few weeks.

Thanks Richard, very useful!


#6

Scott,

I’m pretty good. Up to the spring, I was still concerned there was more to do. For some reason since then, I’m bothering about it less and could argue I’m perfectly ok. I’ve got some residual stuff going on but I think that’s what everyone describes as “the new normal”. My new normal is perfectly fine.

In some regards I’m sure PHIL and onyx glue are similar. What I did read about PHIL was that it came in ready-made packs of 1ml so very easy to use in theatre but was a bit more inclined to irritation. So my reading of it was that it made my time in hospital quicker and easier for the doctors but maybe I had a slightly rougher time of it in terms of sore head.

I was very happy with my procedure in terms of how non-impactful it was. The doc suggested I might need two visits to theatre and after my first visit, I was completely OK about getting through a second visit.

Do you know you need an embolization, then? I wasn’t sure how far you’ve got already.

Best wishes

Richard


#7

Really glad to hear that you’re good! When originally reading about how tough some people have had it here with side effects etc it can be worrying.

Dr has also forewarned me that it’s not certain they’ll be able to occlude with just one embolization though that’s the hope. He seemed to imply it was a relatively easy one to get access to though with the location. The fistula itself is on the brains surface though many of the veins it drains into are inside the brain.

Yes I’ve been told that it’s relatively clear cut that it’ll need to be embolised, it’s too high risk to leave alone because of the drainage into veins as opposed to a sinus. Surgery is an option though something they (and I!) would only explore if the embolization isn’t successful.

I’ve got a call with the Neuroradiologist who would perform the procedure this morning, feel like I’ve exhausted him with questions already ha so not sure what else to ask now ha.


#8

It sounds like you’re well set up. I’ve no idea what other questions you might ask, either. Do you have any idea on date for procedure yet?


#9

Yeah, provisionally (I suppose these things always are, might be moved back if there are others of greater need) it’s the 5th of September.


#10

That’s pretty close. Week before you’ll have a pre-op assessment.

If there’s anything we can do to encourage you between now and then, just say.


#11

Hi guys, sorry to but in on the conversation. I am also a AVM newbie. mine is 3 times 3 times 4 cm, which is smallish?? I’m not sure.
On a daily basis I experience pressure in my head, headaches, migraines, and the pulse in my ear, all whilst doing my first year in University whist studying Nursing with 3 children.
Im waiting on a aniogram to see what the blood flow is to that AVM then they will explore the management what ever it may be surgery, embolisation etc.
What I’m curious about is how long did this process take for everyone else??
And if surgery is a option is it wise to take it? because of my symptoms If I can have surgery thats what I will choose, because I just want to fell normal again.

Hope you don’t mind me joining in on the conversation
Keira


#12

Thank you Richard!

Welcome Keira and not at all, you’re welcome to post on here and anywhere else as far as I know.

Not sure about the size though my Dr told me that’s not always important (more location and drainage) though you can also ask your Dr more about this (there’s a great post somewhere on this site with a list of questions to ask your Dr which I found super useful).

For me I only recently had my angiogram and this all begun in May when I had a seizure. In terms of treatments it all depends on the location etc of your AVM as it’s different for everyone. Embolization tends to be the preferred first method if possible as it’s less invasive and risky than open surgery though there are also other options like Gamma Knife (not possible for me) for some.

I hope everything begins to progress for you shortly though I’d echo Richard’s advice to me from above, try not to worry about it - in all likelihood it’s been there for years. I’m also experiencing headaches, pressure etc though I’m finding that I have good & bad days - prior to today I felt pretty bad for 4 or 5 days but today I feel a little less pressure - so rest assured that it may not always be so bad.


#13

Hi Scott,

You are definently not alone, you are welcome to check my post history to have more in-depth account of my experience.

The “condensed” version is - in May 2017 I was diagnosed with a roughtly 4cm left occipital brain AVM. There were years of gradual decline with the year preceding diagnosis being a very intense decline. A visual field test at the opticians found that I had lower right sight loss in both eyes which then led to an MRI finding my AVM. October 2017 (I think?) I had my angiogram at NHNN, London (couldn’t recommend more highly). This angiogram confirmed that my AVM is very deeply ingrained in the lobe, highly aggressive and was causing perminent brain damage (hence the sight loss).

26/01/2018 I had the embolisation, they decided to try to embolise the whole AVM since the vessels surrounding my AVM didn’t look like they would hold up much longer - a severely disabling or fatal rupture was imminent. They managed to reduce my AVM to less than 1cm. Unfortunately during the embolisation I had a stroke resulting in me losing most of my right hand visual field in both eyes. Due to fast work of my neuro-radiologist They left the remaining part of my AVM pretty much the only working part of my left occipital lobe - controlling my essential right central vision. I get about independantly without aids (although still have difficulties).

On the 20th this month I will have an angiogram to determine what to do with my remaining AVM. Since it is very high risk they wish to do gamma knife but the angio will confirm whether I am a candidate.

My AVM has caused me to have occipital seizures only affecting my vision. My neurologist has put me on Lamotrigine which has significantly reduced these seizures from several a week to a couple a month. I will be increasing the dose until I reach a dose which completely prevents these seizures. Aswell as the sight loss, the stroke has caused me to have problems with my short term memory, slower reaction and processing times, lower energy levels where I sometimes slur my speech and sight goes blurry and has affected my co-ordination. Focusing on working on my computer too long makes me very tired and gives me a migraine, other than that I have been migraine free since my embo. I have found out that I have level 3 hearing loss in my left ear that might be due to the AVM/stroke/vascular issue too.

Do remember though before panicking that this was a extremely rare case - I was given a 5-8% chance of a stroke which is pretty small all things considered. Since it was so aggressive every specialist was suprised I was still alive and was diagnosed in time. I feel so lucky it happened in theatre where they could control it rather than it bursting outside of theatre and likely dying. I have no regrets, I am alot happier in life since my embo, I feel positive and I have developed significantly as a person with plenty to look forward to.

In terms of worrying about the “ticking time bomb” this is the motto I live by - don’t worry unless something happens to worry about. I think worrying about the possibility of sight loss/stroke before my embo was actually worse than having the stroke and then taking steps to move forward. It’s not ideal but you get through it. It isn’t a life ender and I have plenty to accomplish in life moving forward and still am able to succeed in the goals I had before all this AVM stuff. It’s just a slower route to the same destination. Now I won’t waste my time worrying about possibly losing the remaining right side vision and becoming legally blind. If it happens then I will deal with it then, but right now it is only a possibility and not a certainty. Knowing I have a second chance at life and having my life essentially saved has completely changed my view on life. I appreciate life and the little things so much more. I think I will have a richer life than I would have had if I hadn’t had this all happen. I’ve had the chance to think about what I really want and my priorities - I will not coast through life.

If you had told me a couple years ago that I’d have a stroke, over radiation causing me to lose half of my beautiful thick hair and that I’d break up with my boyfriend I saw myself marrying and live with my parents for over a year unemployed I’d go into depressed-panic mode like my life would be over. Crap happens but we are stronger than we think, if it happens you find ways to cope because you have no choice otherwise. Life won’t be this tragedy in reality that we think it will be in our heads.

More than welcome to PM me to talk more and I’m happy to meet up in London too to chat more, we can exchange details in PM if you’d rather talk on another platform too. I’m here for you whether its advice, to vent, someone to listen and give emotional support or just have a laugh and raise your spirits :relieved:

Couldn’t have felt safer in NHNN’s hands, amazing hospital staff in general, fantastic specialists - they went as far as to have 2 national meetings to appoint the best neuro-radiologist to take on my case and to decide what the best course of action was.

Best wishes,

Corrine


#14

Keira,

Welcome! As Scott says, it’s fine to jump into the conversation, especially as you have a DAVF. If you had some other AVM, it might be better to join a different conversation but Scott & I are DAVFers.

Size is not necessarily the thing as far as a DAVF is concerned and it is the Cognard classification that I think is used to judge DAVFs and whether they really ought to be operated on. I’ve put a link to that in the AVM 101 section just now.

If we measure your AVM by the Spetzler Martin scale it is borderline small to medium but that in itself is only a part indicator. From what you’re describing it does sound like it needs a proper look at and then a recommendation from the doc as to “needs sorting?” or “ok to leave?”. Based on the Cognard scale, some can be left alone.

All four of us in this conversation are in the UK and I expect that progress will be pro rata to

  1. Recognition of an AVM or DAVF. You’re past that point, so good.
  2. Determination of risk. This is the Cognard classification bit. Basically, if your DAVF is pumping into veins such that you’ve got a bit of opposite flow going on (“reflux”) it needs sorting out. I would say my DAVF changed over time and only at the point it was clear that it was getting more risky did I get to the front of the queue. It took me ages.

My story is here (there’s a link back to the earlier waiting-for-diagnosis part): My Update - Dural AVF Embolization.

Hope this helps,

Richard


#15

Thanks so much for sharing your story Corrine, it is very comforting to know that I’m not the only one, with what feels like a relatively rare condition.

Sorry to hear about your stroke & partial vision loss and it’s fantastic to hear that you’re happier since your embolization with all things considered!! I’m also trying to approach things positively, and whilst it’s hard I do find that the diagnosis has been a reminder to make the most of life and really appreciate the small things.

Can I ask how many seizures you’d had prior to starting medication? I’ve just had one so far and had an EEG this week (waiting for results) so not sure yet if I should medicate.

All the best for the angiogram, hoping that they can sort it with Gamma!

I’ll be sure to drop you a PM, perhaps as I get closer to the date of embolization (just hoping that it’s not moved back!).


#16

Richard I have read your story, thank you for sharing that.

And same as what Corrine has said, it is comforting knowing I’m n to the only one suffering with this rare condition.
Also I have been making the most of my time off Uni, and spending my days down the beach with my children, which I find very calming, and just takes the edge off my symptoms slightly.

From what I gather, getting this sorted is a long process. And day by day I feel like I’m deteriorating and finding it harder and harder. The pain sometimes just gets to much, and most evenings I have nausea, dizziness, pain, pressure, stiffness in my neck, tiredness.
iv not complained about my symptoms at all, I lived and suffered with it alone, and self medicated with paracetamol and ibuprofen.
How bad did you get before you started having angiograms etc?? And when is your next appointment, and what treatment will you have??

Every day I hope the postman brings those all important letters from the hospital confirming appointments, but nothing yet.

Finding this page has given me a little hope however, and people to talk to in the same situation as me.

Hope everyone is well this evening, and thank you for your reply

Keira


#17

I felt like I was deteriorating over Jan to March 2017, so I know what you mean. If you are getting a stiff neck, I’d be tempted to tell the doctor about that. I think I’ve read that it is a symptom to take heed of. I do think you should be reporting your symptoms to your doctor completely, to ensure they are taking you seriously.

Have you got a date for your angiogram? If not, I would ring the radiologist’s secretary and pester her till she gets you booked in. Tell her as many symptoms you can think of.

If you don’t get traction, get your GP on side.

It does sound like you are not particularly well, so I’d definitely stay on their case. If at any point you get sudden or severe symptoms, go to A&E. It sounds like you’ve been toughing it out a bit but it isn’t good to tough this one out. Not to worry you. Just to encourage you to get attention sooner rather than later, if you see the difference.

I’ve had all my appointments. I was embolized last year. I’d say it’s taken at least a year to feel pretty much back to normal and I vary from day to day as to how I feel but on reflection, I think the days I feel less ok are the days I do rather too much. It was definitely important to get the embolization done, I have no doubt about that. Other treatments may be appropriate for you.

If you drink coffee or like chocolate or a tipple of something, it’s worth cutting these things out. Or smoking. It definitely takes the pressure off. And ibuprofen is not a good idea if you are liable to a bleed, so manage with the paracetamol if you can. The ibuprofen thins your blood, so if you do bleed, it will take longer to stop, I think.

Hope all of this helps!

Richard


#18

Yes your definently not alone, and we are always here to talk :slight_smile:

Yeah! I think my stroke was a big wake up call. I looked back at my life and thought “what if this was the end of it, what if I had died?”. I realised I had spent much of my life stressed out, worrying about things that now seem relatively trivial in the grand scheme of things and trying to please other people. I had 4 old friends come to visit me and it was interesting that they were ones who I didn’t have to work hard in the friendship. All the high maintainence / drama filled friends I had poured my energy into didn’t show up. Three AVMers (including @DickD and @Shimarlie) came to visit me who I had not known for so long and had not met in person many times before this. They valued and cared enough about me to show up when I needed support most. Stresses over my education - where was my degree when I was on the operation table? I realised I had been given another chance, a chance to prioritise being happy and to determine “is it really worth it?” before I let things really get to me. Most struggles are temporary and looking back you think “why did I waste my time?”. No more of that now! So I feel as much as being partially sighted sucks, I’ve been blessed with this new outlook!

Too many to count, I had been having these seizures for years that were put down to being standard migraine auras. It’s only once I finally went to see a neurologist back in June this year when I was finally given medication. As for EEG because my seizures are partial, only in the occipital lobe area, the activity was not picked up. I was given Lamotrigine on my neurologists hunch it might be partial seizures, he had the “if this works than it’s seizures, if it doesn’t work then it’s migraine related” approach. Thankfully the medication works!

Ahhh Thankyou so do I - will keep you all updated!

Fingers crossed your angio isn’t pushed back too, look forward to talking more in due course :slight_smile:


#19

I had a DAVF also treated at Kings. Mine was not as severe (no reflux), but i did have pulsatile tinnitus and migraines. It took them two tries with ONYX to close it. Ive been doing well so far!

I wish you lots of luck with your treatment, i know how terrifying it is, but Kings is a really great hospital!

Nina


#20

Thanks Corrine, it certainly does help to put things into perspective. Think I had a tendency to worry about the small things, and since being diagnosed I do feel that this has reduced. Do keep us posted on your angio and gamma, you’ve been there and done it so don’t worry - you’ve got this!

@Nina_Victoria Glad to hear that you’ve got yours sorted and it was at Kings!

I’ve had a call from my Neurologist this morning (who has my EEG results back) - unfortunately they did pick something up, a little abnormal activity (though not necessarily - epileptic - so I’m a little confused) in the Temporal lobe (my fistula is in the Occipital). Little bit worried, though got an appointment booked next Thursday to run through it - they are recommending that I start taking Keppra.