After having mild stroke-like symptoms, I had an MRI with contrast which showed a tangle of vessels in my cerebrum with FLAIR. I was scheduled for a angiogram which occured yesterday. The diagnosis was a Borden Level 3 dAVf in the right occipital region. I’m not sure how it was acquired. I had a severe motocycle accident with extreme trauma 6 years ago with no head injury, and a nerve transfer after which I had a mild stroke in my right temporal lobe one week after shoulder surgery on my right side. Last year, i broke my leg and needed surgery. Blood clot from any of those incidents could have caused this. Im waiting to hear from the neurosurgeon Ive been referred to down at MUSC in Charleston, SC. I was told that I will likely have a glue embolization of the dilated vessel. Im being told this is routine with high rates of success. But, Im reading horror stories of seizures, dizziness, headaches, and nausea extending for months. What can I expect? What about my teaching job? Whst will my quality of life be?
I’m a DAVF patient. I was not given a classification for it but I think I was type 2a+b. My DAVF was shunting into my right transverse sinus, which is a dural sinus rather than a sub arachnoid cortical vein. Right occiput.
I did have increasing levels of dizziness in the period between detecting it and having an embolization. The embolization is basically the same as the angiogram that you’ve had but with the injection of glue or other “embolic material” to close off the shunt. I had three nights in hospital, I think (it was 9 years ago, so I’m allowed to forget) and then three weeks off work before returning to work. I used to work in IT, so in an office but longish days, 8-6 sort of thing. I’ve since retired, not affected by this.
I was largely ok after the three weeks – I can share my blog of the time, or you’ll find it on my profile, if you want the detail. I was perfectly functional at work post op.
It took me about 2 years to get back to fully “normal”, fully comfortable that I was out of the woods, so don’t expect to be back to fully “normal” immediately but so long as everything goes to plan, you’ll be doing normal stuff very soon post op.
Ask anything you need. It’s great to have you join us and to help you a little along the way.
Hi Van, I had grade 4 DAF diagnosed in Feb 25 and had onyx embolisation in March 25 as neuro team felt close to rupture. I found recovery a bit challenging initially, as I had no symptoms apart from pulsatile tinitus pre op and felt pretty awful for a while after … more tinnitus of different pitches, lightheadedness, chronic fatigue and brain fog. I went back to work on phased return after 4 weeks and for me that was too soon, and I didn’t actually get back to full time hours until August. I struggled to accept I was fixed, despite the team and a scan and then a cerebral angiogram saying otherwise! So I guess mental and emotional recovery took longer than physical recovery but I am back to living a totally full and active life alongside working full time. I have a tendency to over analyse every noise or sensation in my head or neck and wonder if it is connected / it is back, but give myself a talking to … I’m not back to my old normal but have embraced my new normal and the gift the neuro team gave me by getting rid of what felt like a ticking time bomb in my brain
Wishing you all the very best and treat yourself with kindness during recovery, try not to rush it. Lisa
Well, I’m scheduled for the 22nd of May at MUSC Charleston, SC. The nurse calling to schedule made it seem pretty routine with nothing to worry about since I have no major symptoms. I will be in theatre at 6 AM and will stay the night. They want me to take it easy for a week afterwords. Wish me luck…I’m somewhat worried. I make my living using my head as a professor and librarian.
Van, I will be thinking of you and wishing you every success. I’m sure your team will do an excellent job. Do take it easy afterwards, listen to your body, but from my experience, although recovery was longer than expected, there has been no difference in my mental faculties at all … cognitive process, executive function … all fine!
Let me know when you’re home, it will be great to hear from you. And if you ever want to chat please do reach out … Dick on this site was amazing when I joined, it really helped me having people who had been through the same thing to talk to.
Good luck, and I will be thinking nothing but positive thoughts for you, Lisa
Same here. I do everything I used to do with the same degree of capability or inability!
While an embolization seems less invasive than a craniotomy, for example, I found the change in blood flows to be more impactful than I anticipated: I felt weird. However, it was a perfectly gettable throughable operation. I have said ever since that if I had needed to have a further embolization to close off a DAVF or AVM, I’d be much happier to go and do it again. I think the fear of the unknown is a big part of it.
There are some dangers in the procedure but again my rationalising with myself was that it is just as dangerous to cross the road or descend the stairs and yet we do those every day. It is the familiarity of repetition and doing the usual mitigations of looking both ways, listening, or holding the handrail that mean we are in control. The difference with an embolization is that we have to put that trust into the consultant interventional radiologist’s hands.
You’ll be great. Nobody expects us to be comfortable with going into hospital for this kind of thing. All you need to do is let the nurses lead you through the day. They will look after you and tell you what’s going on next.
If you’ve got questions that we can help to answer before you go in, just ask. We only have our own experience to go by but there are several of us who have had just an embolization or a DAVF and thousands more who’ve had a brain AVM treated one way or another.
Hi Van, my dAVF was in the region of my right occipital lobe. It was discovered when I began to experience “field deficits” in my left eye, partial blindness, basically. My glue embolization was performed in 2009. It was 100% successful, and I went on to earn two black belts in kempo karate, and I participated in the “Mud Ninja” (lile the Tough Mudder) 5k obstacle course race for 7 years in a row. I do have tinnitus in both ears pretty bad, but that’s sort of normal feom what I gather. My quality of life is excellent. One unexpected side effect of the surgery was the loss of my hair, due to the flouroscopy agent they used to see their way around with the glue catheter. My hair started falling out in clumps about a week after my six hour surgery. So, I shaved my head and looked like a Buddhiat monk for about 6 months. But it eventually grew back. They disn’t evwn mention that could happen. I think my surgery took longer than expected. Best of luck. I wish you a good outcome.
You know, I said that I have had no previous symptoms other than a very mild stroke-like event, but Ive had mild tinnitus since a child. In a quiet room, I hear static. I just thought it was normal and ignored it. I dont know, perhaps unrelated. But your active life gives me hope. I want to contine riding my adventure motorcycle, my mountain and gravel bicycles, and keep active in research and teaching. It is just staggering when you figure a davf occurs 1 for 100,000 every year - not the lottery I wanted to win. But my surgeon said a davf was better than an avm, which are much more common.
Of course, when this happens, you look back at your life and reflect on all the less than good stuff you did, and figure maybe you just had it coming…even if I’ve tried to live my life better. No skeletons…just a past marriage and a few ruined relationships. My ex went through needing to have a VP shunt placed in her brain twice. I stayed with her through it although the marriage was crumbling. The opioids turned her paranoid and I got accused of all sorts of heinous things. I finally left when the cops said that her accusations were getting serious and she may manufacture evidence. I had cared for her and loved her for nearly 30 years, but she was no longer the same person. I moved out and waited for 3 years, no change. She filed for divorce…we divorced and I remarried a year later to a wonderful woman. Cant help but think this is payback…I know you are not priests, but this is going through my sick head.
Oh, and I just realized that my avatar looks like an AVM. Ironic, I’ve had that avatar for years. It is the Angel Oak Tree on Johns island south of Charleston, SC. It is near where I will have the procedure. It is a beautiful specimen of a huge southern live oak tree that is centuries old. For those of you on the east side of the pond, old trees like that are rare in America despite the amount of timber here. Here is the website: Angel Oak® | Charleston, SC - Official Website
