Recently diagnosed with Dural AVM, now what?

Types of Avm's Brain DAVF
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About a month ago Dural AVM was indicated on an MRA I had performed, but not on MRI. I’m from Rochester, NY, and not sure where to go or what steps to take next.

About 10 years ago I had some mild stroke-like symptoms, which passed after some time, and I seem to have fully recovered from, and not sure what the cause was. That could be completely unrelated, however at that time I had an MRI and MRA performed also. Nothing showed up on those, unless it was missed entirely. So it doesn’t seem like I have had this very long.

I meet with a neurosurgeon next week, and I know I’ll probably need an angiogram, but I know for neurosurgery you can’t go to just anyone. I’m considering Cleveland Clinic, if anyone has suggestions, please let me know.

The recent imaging is due to symptoms I have been experiencing over the past few months, that have changed rather quickly. In late August I had a mountain biking accident which also included a head injury. I probably had a concussion, but I was functioning just fine, so I pretty much brushed it off and carried on. In November I experienced some noticeable hearing loss in my left ear, also with loud ringing in that ear. After a few days, that had passed, and was replaced immediately with a whooshing sound in time to my heartbeat in my left ear. This lasted about 6-8 weeks, at which time it stopped completely, and was immediately replaced with specific headaches behind and around my left eye. I’ve experienced some visual disturbances here and there also. The headaches started to subside a few weeks ago, and my symptoms overall have improved, but haven’t disappeared completely. I still get the headaches, but less frequent and lower in intensity. Over the past few days I’ve noticed the whooshing again, but much less frequent and intense. It seems like something is changing in there, I don’t know if it’s healing or getting worse.

Anyway, I suspect this is from head trauma, which from the reading I’ve done, may be a good thing. It can heal, or I might have a better chance of full recovery. I don’t know enough yet really.

I’m usually very active, and I was looking forward to the warmer season, biking, running, etc. For now I’ve stopped everything, for fear of injuring myself until I know more. My doctor and neurologist said I didn’t have to stop my activities, but I don’t trust their judgment. I don’t think they know enough about this.

Mine is unruptured, and I’ve had fairly mild symptoms. I don’t want to stop being active, for that’s something that maintains my physical and mental health. It’s no life at all for me if I had to stop the things I enjoy, but I’m also being cautious.

My greatest fear is that I may not get out of this unharmed. If I leave it alone, it may rupture at some point, with unknown consequences, and with any kind of surgery, I am taking risks as well. I’m afraid I may never be the same after this and will not be able to recover fully and return to my life as I know it now. I feel like right now is the best it’s going to get, and any choice I make at this point will lead to deficits at some point. That’s horrifying to me as I am a very independent and self sufficient person, and I have basically no support network. I am single, and do not have a relationship with my family, nor do I intend to for any reason.

I have no experience and limited knowledge of this. I’m not sure what to do next. I could use suggestions.

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Hey Taco! (love the label!)

I’ve got a Dural arteriovenous fistula, too. I’m older than you (50+) and I had similar things going on.

You do need to find a neurosurgeon with experience of neurovascular stuff and/or an interventional radiologist. Between them they should be able to recommend what to do in your case.

Whilst this is a rare condition, I get the impression that DAVFs are quite well known. Your symptoms (especially the pulsatile tinnitus = the heartbeat sound) is classic.

I took a year to go from primary care to embolisation and felt I was going downhill rapidly enough, thanks. My embolisation definitely fixed much of it but I currently have a good degree of tinnitus, fullness of my left ear, possibly a bit of the pulsatile t back and what feels like pressure in the old noggin so I’m going back again this week for an outpatient consultation. We’ll see if more needs doing.

All of this is eminently survivable and, depending on how big a thing you’ve got going on, I dont see any reason why you cant go back to normal afterwards. Obviously, there are scales of impact, so you need to get a professional opinion on your case and move from there.

Id say keep exercising but go light. The big big thing is to keep your blood pressure at normal – not raised. Cut out coffee, smoking, alcohol, anything that is a stimulant if you can. But doing some exercise is undoubtedly important. No straining, pushing hard. Perhaps no endurance stuff. Go v easy.

Welcome to the site. It good to do something and its great you’re here!

My story…

up to September just gone, if helpful.

Very best wishes,

Richard

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Hi Taco you are not alone. We all have fear but we can’t let it take over us. I personally worry am I lifting too much at work sometimes but we just have to keep moving and pushing forward. I also went through this and was down in the dumps but I’m better now. Good luck!

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Did you not have yours treated?

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Met with neurosurgery. I’ll need an angiogram. But it looks like DAVF. Also, what could the relatively rapid change in symptoms mean?

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I had one treated six months ago. Like you it was found by accident during a test and was unruptured. First they tried embolizing it, which works about half the time. It didn’t for me so I had a craniotomy. Surgeon only cut a 1/4" swath of my hair for the surgery (I have waist-length hair), 25 staples to close the cut, 6 inch hole in the skull bone (put back together with plates and screws). I was only in the hospital for two days, slept most of the surgery day, which is normal. Only restriction I had going home was no heavy lifting for a month, otherwise normal life. I felt great from day one at home! No more symptoms, no more whoosh, no headaches, nothing.
p.s. I’m in my late 50’s with few friends (other than online) and even fewer family members who care if I live or die. I did this surgery for ME.

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Thank you, that was very helpful. Where did you have your surgery?

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Hi Tacos
I have a DAVF and it was recently treated with embolization. I know it’s nerve wrecking as you wait to find out more on what to do next. I’d recommend finding the neurointevention radiologist, I’m from Canada And not too sure about the US hospitals, if you are interested in canada let me know. Between appointments I read a ton online to educate myself. I learned every case is different but DAVFs may be treatable quite often using embolization. Some DAVFs are aggressive and need treatment. In my case the MRI was clear enough that they did the Angiogram and Embolization on the same day. While waiting for surgery I cut all coffee, alcohol and took it easy to keep the blood pressure low. Staying positive mentally is just as important too. Let me know if you have any questions. All the best.

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Sorry Tacos , just to clarify I realize you’re already seeing a neurosurgeon, likely there should be a team to decide what recommendation to provide you. Try to find out everything you can from the Angiogram and whether the best route is treatment and if so what type is best. For me i received a clear recommendation and went with it. Let me know how things go.

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Wish you luck with your journey. I am getting a referral to a neuro interventialist for possible cerbral angiogram. Have a small frontal lobe AVM unruptured.

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Me, too :heart: Completely agree!

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I had my surgery at University of Chicago hospital. Dr. Awad was great and very caring too. His entire staff were in fact.