So I was diagnosed 6 years ago with a very large Dural AV Fistula. After lots of neuro and IR consults in London it was agreed treatment was too dangerous for me as I have a collagen (loeys-dietz) issue which means I have a higher chance of stroking out with an angiogram. Just had another MRI due to severe headaches and it’s grown!! Its now massive. It’s even more serious and they want me to have treatment. Scarily the NHS is working very fast. I’ve had telephone calls with the neurosurgeon 3 times, MRI and consultation with IR all within 2 weeks. I would really like to hear from people who have had embolisations and what the side effects have been. And anyone here in Edinburgh? What consultants did you have- any good?
I’m feeling sick, shaky and terrified again. I was terrified 6 years ago and it took me years to push it aside. Now it’s back. And the icing on the cake is I’ve just been told I need a full hip replacement as my hip joint is bone on bone and I’m in agony with that. So life is not really worth it at the moment.
I had a large DAVF (one of the biggest my doctors has ever seen) near my left carotid artery. My DSVF was repaired with a combination of 40 coils + 5 stents, and then 1 wall stent in the left internal carotid artery. Total operating time was 6 hours. I spent 1 day in ICU and a half day in a regular hospital room. Overhaul though it took a total of 2 procedures to fix the DAVF, the 2nd procedure was about 2 hours. The reason why my surgeon did it in 2 procedures is because he didn’t want to be too aggressive and cause more damage than good. So we took baby steps, knowing very well that it could have even been 3 procedures.
Feel free to read my journey here:
I am located in the USA and went to Mount Sinai in New York.
How many surgeons have you gone to for an opinion on your current health situation? I went to multiple surgeons until I find the best of the best. From what I know, DAVFs are very rare and you should make sure your surgeon is very qualified in this area.
Let me know if you have any questions. Wishing you the best!
Aivilo
I was diagnosed 7 years ago and saw 3 interventionist radiologists and 2 neurosurgeons. Also had my details put through 2 different MDT meetings. They all agreed to watch and wait was best option. But over the past few months my headaches have become intolerable and I have moved from London to Edinburgh so they wanted to check it. The neuro dept here have a special new MRI so I had it on Friday. Neurosurgeon called today to say it has grown dramatically (he had the scans from 7 years ago). He wants me to meet an intervention radiologist on Monday. It’s all quite sudden so I’ve not done any research on the people up here yet.
Did you have any side effects or neural deficits from your treatments?
To add to the ‘danger’ I have a weird genetic condition (loeys-dietz) which means my collagen is weak so I have a higher than normal chance of having a stroke just having the angiogram let alone treatment. Which is why when first diagnosed they said just watch and wait.
I too have very loud pulsatile tinnitus in my left ear as well as severe migraines and headaches. And apparently my davt is huge(also one of the biggest they have ever seen) and it’s growing. And then to be told that I need a hip replacement as well…it’s all a bit too much
I had a DAVF in my right occipital, pumping blood into my right transverse sinus and then flowing past both ears that I discovered in 2016 (because of the pulsatile tinnitus). Mine looked small on the scans but was basically a pretty high flow shunt straight into my TVS. My symptoms developed quite quickly from a very faint whoosh, whoosh in October 2015 through to dizziness and inflated veins on the outside of my skull by the time I got to the front of the queue for an embolization in April 2017.
The embolization is challenging, I think, but honestly my opinion once I got through no 1 was that it was something I could do and if I needed to go through no 2, then I was much less bothered about it than beforehand. The fear of the unknown was very high for me.
Like @Aivilo I stayed in neuro ICU post op for one or two nights, then to neuro ward for another night, I think, then home.
The biggest thing for me was that I didn’t feel fixed straight away. Indeed I was very unsure about how I felt post op. I can link you to my story if you like. Basically, I’d had the plumbing in my brain rearranged overnight and that was very weird: high pressures in all the right places, low pressure in all the right places but I think it was so immediate it felt weird. Plus, your head has just had a bunch of solvent for the glue flowing through it and glue and a bunch of disturbance, so you do feel weird for some time afterwards as everything calms down. I even had migraine aura like symptoms for a few weeks afterwards but they got fewer and less frequent over a month or two.
So, yes, it’s an exciting time. I would hope that embolization is a good option for you – there are undoubtedly risks to it and it sounds like you have extra challenges – but I hope it is something that you could get through well.
My doc proposed two approaches to it but in the event declared the first 100% occluded. It took me 18 months to 2 years to believe him and feel “better” but I did get better and there is nothing I do today that is limited by my DAVF or any worries about it: it has vanished as far as I’m concerned, out of commission.
Let us know how you get on and any other questions you have.
Thank you. It’s good to know that you feel so much better after the embolisations and that they were not too awful.
Im seeing an IR on Monday afternoon to discuss the latest MRI and what he thinks should be done. But I’m still leaning towards doing nothing. My DAVF is so large it will take lots of embolisations and for me each angio is really dangerous. I was told 6 years ago that just having the angiogram I had a high chance of stroking out.
I feel I’ve been time warped back 6 years and the terror had just flooded back. I had got to a place where I was coping really well and not terrified all of the time. Because I can hear it constantly I can never really forget. Always a reminder.
Any way let’s see what happens on Monday.
Yes, see how you go on Monday (I thought maybe I’d missed the Monday!)
The guy I saw was a consultant interventional radiologist, too.
I completely understand the ticking time bomb element of it, since I could hear mine ticking as well (or at least pumping). It got to the stage of being like the washing machine on pump-out, quite loud, especially at night. I mean, I think it was so strong a flow it was pushing blood the wrong way in all directions. In my mind it was pushing into my sagittal sinus, straight sinus and I could even feel it on the outside of my head, where it was back-inflating a bunch of veins on the outside. If I pressed my fingers onto the external veins, it was strong enough to lift my fingers up! I got so dizzy lying down (extra pressure when you’re on the horizontal) that I got extra dizzy in bed, so I ended up “sleeping” on a bank of about three or four pillows to try to keep my head above my heart (but who can sleep like that?)
I think my main safeguard while I was getting less well was to have a wristband made up with my name, my NHS number on, my condition outlined and my wife’s mobile phone number (oh, and “in case of stroke, dial 999” on it, for good measure): having that helped me to feel that if I was found in a poor state, examining the carpet at close distance at work or suddenly lying on the floor on the bus (driving was not allowed) I would get the right help quicker. That definitely helped me to relax but I have to say I was convinced that I needed treatment. There’s no way that I felt safe enough to be left unoperated on.
Hello I’m so sorry that you are feeling this way again. Feeling overwhelmed by symptoms, emotions and ‘what should I do’ decisions are valid and scary.
In 2022, I had my C4 left side DAVF embolized with Onyx (glue). I had a stroke prior to the embolization with deficits. I decided to go through the embolization as I wanted to avoid another stroke-hemorrhage. I was told that I had a 60% chance of a catastrophic stroke. Luckily, I did not need a craniotomy as this was completed vascular.
My embolization was considered successful as the goal was to prevent hemorrhage. That said, the following year was filled with a new blood flow which was very difficult to get used to. The head pressure was intense. New medications helped. Last year, I had two seizures and now have migraines with aura (mimic stroke like symptoms). Only now 18 months later I feel like I can manage my symptoms and daily life. This is through medication, retiring from work and limiting activities that increase the pressure in my brain. I am still unable to travel by air for the foreseeable future.
After your embolization, you will be able to feel much better and in control to tackle then your hip issue. Your quality of life will improve. This is definitely my hope for you.
I live in the States, however; online consultation at the Barrow Institue in Phoenix, Arizona will be helpful to you. My neuro surgeon is part of that healthcare group. Online consultation may be in your best interest. In your area, find the top neuro interventional radiologist.
Hi, we’re all different - this difficult journey is not traveled by many
I have posted this for quite few folks on here -
My (unknown) AVM caused a hemorrhage in July of 2020. A few MRI’s showed more scar tissue which according to the neurological team at Barrow Neurological was from other prior smaller hemorrhages - I never even knew what they were aside from just being terrible headaches.
They came in on their 2nd Angiogram & hit this thing with Onyx glue(18&34) - I had two choices, die & bleed out internally or attempt this. When they hit the 1st one, they knew they could do it again if necessary & not need to go in for removal, but they achieved 100% occlusion on the 1st attempt.
My AVM is a dAVF located about an inch towards the back of my head on the left side of my head on the same plane as my left ear - left occipital, if I remember correctly
That’s nothing but luck & timing I suppose
I have been recovering for close to four years now. My head feels better than most other aches in/on my body(most of the time). I did wind up at BNI yet again last July after working about 70 hours for a few weeks in a row then I couldn’t work for a few days, maybe a week. They found it was caused by brain swelling, then treated it with a cocktail of something(I can’t recall exactly of what).
Now, it’s time for another Arizona summer. . . . That’s my experience with all of this summed up.
I wish you the best - all of this is quite life changing to say the least
So I had my appointment. As expected they want to ‘fix’ it. Because it’s so dangerous for me he says he would want to do the angiogram and treatment all in one if he can. Probably glue/coils/ballons??. I can’t really remember much. But he said as it’s grown over the past 7 years then the watch and wait is no longer a sensible option. And just to add to my stress an hour before the appointment I got an email from our landlord saying we had to leave in 3 months as he’s moving back. Only moved in 7 months ago. Feel like I’m living in a nightmare. My head, my hip and now my house.
If it helps, I’m significantly vasovagal, so having an angiogram was something I wasn’t sure how I was going to get through. My consultant interventional radiologist suggested in the same way that he would do the planning angiogram immediately before the embolization under general. So I saw a similar scan to you, agreed to go into the procedure and didn’t know what the angiogram showed until after both the angiogram and the embolization. I’m guessing that if anything had been unsuitable for the embolization, they’d have stopped and I’d have had just the angiogram and then come round for a conversation and a replan but as it happened, it all got done at the same time.
Other than whatever extra complexity you’ve got with the Loeys-Dietz, I can say that I came out of the embolization uncomfortable but knowing that it was worse for me in the anticipation than the reality: I felt that if I needed to have a second round, it was something I could actually happily do.
I had a subsequent angiogram at about 8 weeks under local and that was fine. I had a later angiogram a year later that I managed to go all vasovagal during for no real reason (It is true I can faint over the most ridiculous things. It is a stupid disability! )
Mine is being sick!!! And almost fainting. And of course vomiting is highly dangerous with this in my head.
My issue with treatment is the after effects. And the high risk of me stroking out on the table I think he mentioned maybe 20% risk. I’ve read that so many people are left with weird and uncomfortable/painful side effects. And right now I’m thinking well I’ve lasted 7 years knowing about it. Maybe not doing anything is a better option. I don’t know. I’m confused and scared. And have a raging cough and cold so feel awful which doesn’t help.
No. Feeling poorly really doesn’t help at the moment.
20% is pretty high. When I was trying to decide on treat or not treat, I was looking at the risk of the DAVF blowing. Did they give you a risk of rupture? If that’s bigger than the 20% the maths is wholly unpleasant but might start to push towards doing something. (This was how I was doing the maths for me, anyway, though I got to the stage of feeling so poorly with it that I decided the maths was fully round in favour of an operation before I got to the date. There was no question eventually.)
Happy to talk through anything and equally happy to wait until you’re feeling a bit better.
Very best wishes,
Richard
I think my doc gave “5% chance of something nasty happening, including death”. 5% is still pretty high tbh.
Hi Jap001, Im in Glasgow so not that far from you, I had 2 craniotomies (6 months apart) Its tough to accept what is going to happen and what “may” happen, But think positive, lets get one thing straight the surgeons that will be working with/on you are the best people in there roles !, I understand what you mentioned on the hip, There are a “few” things that are really pulling you down, Try stay positive. Think of the happy times, Be thankful that they found this there’s one thing, My neurosurgeons both work in Glasgow neurology (Queen Elizabeth University Hospital) and were very good, First one saved my life as my AVM Burst (Brain haemorrhage) And they had to operate to save me, I woke up after passing out at home after brain surgery and all was fine, Then was told hey you still have that thing in your head and will need treatment, So I hoped for Embolization or Gamma knife, both the “easier” of the 3 options, but 1 week before my date was told has to be another open brain surgery only this time we will remove the AVM. So again I had your thoughts, but everything was fine, I was up and walking the day after and out of hospital 1 week after that, honestly put all your faith in the docs, they will do everything they can to make sure things go well for you ! .
Hi everyone. I’m not in a great space. Stress is very high as the owner of house we rent and have only been in 6 months wants us out!! He wants to move back into his house. And I just can’t seem to find anywhere to go. I’m probably at my lowest right now. My Davf has grown a lot. They say now that to leave it isn’t a good idea. But because I have a collagen issue it makes the angio really dangerous for me. I think they estimate 20% risk of stroke just doing the angio. I’ve told them to just leave it. I want to get on with the rest of my life trying not to live in fear. I will use painkillers for the headaches and my hip pain (on top of all of this I need a Hip replacement as I can barely walk now).
Anyone around Edinburgh fancy meeting up? I dont want to talk to family anymore it scares them too much. And it would be good to talk to someone who actually gets it. I would really appreciate meeting up
For a chat. Hope you are all well
Hello @jap001 Sorry I am not closer I am in California near Stanford. I too have a DAVF and a collagen disorder, Ehlers Danlos.
Prior to my DAVF I had a massive stroke due to 5 blood clots (CVST) in my brain seems due to my body holding onto to vit K. It doesn’t hold onto anything else for some reason.
I was 43 healthy low BP low cholesterol and in shape. I was actually eating what I thought was a healthy diet and taking vit K . Anyway I did have two embolisms so far.
I am so sorry you have the added stress about your landlord wanting to move back into your place. Not sure if you have a rent board , but when I lived in San Francisco where I am from we had a really strong one and I don’t believe in SF in you are going through a medical issue that they can ask you to move.
I know its hard for family to understand what we go through . My treatment so far has been medical glue and onyx. And with the first embolism the whooshing sounds went away right away 98% . It was such a relief. Then soon after 100%.
(It is true I can faint over the most ridiculous things. It is a stupid disability! 
)
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