Anyone else have scalp sensitivity where their DAVF is located?

So in the last couple of months where my DAVF is located I have noticed pain when I touch my head like I banged my head ( I have had 9 concussions ) and it seems to be spreading.
I dont hear any whooshing and dont have any worse headache then I normally do.
I have been drinking more water just to be sure I was not dehydrated.
Yes I will be reaching out to my neuro(s). I just have never had this particular feeling before esp such a wide area. I mean where it is I always feel like someone is pulling my hair.
The only other symptom I have had is loosing my balance more
Thank you


It is good to hear from you, though I’m sorry it’s because you are worried.

When my DAVF was in full erroneous flow, I got quite a sore patch on the outside of my head – extracranially. My DAVF was pumping into my right transverse sinus and pumping enough to be heard in both ears. The theory I developed for myself was that the pressure in my sinuses was so great that I was getting reflux back into the smaller veins that flow into them. There are some “emissary veins” (and I assume arteries) that flow through some apertures in the cranium and I took it that it was these veins that were being back-inflated.

The inflation of these extracranial veins was quite uncomfortable. Definitely sore, in ways I assume extremity AVM people find their AVMs are sore. And the pressure in mine was such that if I placed my fingers over the sore area and pressed slightly, you could feel the pulse. It was strong enough to lift my fingers each heartbeat.

So if you’ve got anything like that, I’m with you.

If you’ve got something going on elsewhere, not in your transverse sinuses or the sigmoid sinus, then you probably wouldn’t hear it: most brain AVM people round here have never heard their AVMs, so don’t take the absence of sound as too relaxing a point.

Let us know how you get on. :crossed_fingers:t3:

Lots of love,


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Thank you Richard - Yes before my embolism I could hear it and I believe my neuros could feel it with their fingers . My left transverse sinus actually collapsed and that is where my DAVF grew and pumped retrograde until the first embolism.
I do know one of my clots was in my sigmoid sinus but all my clots have been gone for years. It has been years since I have had an MRA and MRV so I guess it is time anyway, Hopefully my good neuro radiologist hasnt retired.

Thank you Richard.

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Ever since my embolization i have felt to what I would describe as a bruised bone feeling where the avm is & Onyx was injected(the area on the side of my head about 1” back of my ear)

It is not by any means overly bothersome. But, definitely there - maybe it’s just all in my head :laughing: due to knowing where it is located

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My daughter is regularly complaining about her scalp hurting her. I asked her dr who said it couldn’t be, but she says it really hurts. It’s good to hear that it’s real and that she’s not making it up.


Mine was much worse before the one year mark. I’d describe it as a bruise in the inside of my skull.

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@mike_az_21 @Gayilsmom Thank you both - yes post embolism I have had pain as well that is constant. But this new pain is a bit worse. And it seems now to come and go. Also I am bit weird and have my dads high pain tolerance for instance I walked on a broken foot for a month and just thought I had bruised it.
I also had a gall stone ( per my surgeon the ugliest one he ever saw he kept it) the size of a golf ball and never went to ER or the dr. My chiropractor was the one to figure it out cause I was vomiting so much that I threw out my neck and I never had mentioned in the 5 years of what I later learned were my gall stone attacks and my pain was never in the front like a normal person of course.

I felt like I was in Monty Python skit when I called to make the appt with my stroke dr who is head of the dept after emailing him - but the scheduling people said since I had not seen him since 2018 I was a new patient and they needed a referral …which I said you want him to refer himself?
I said you do know he is head of the dept …anyway I have an appt with him towards the end of May.
I hope you all have a wonderful Easter

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You had, “just” an embolization - correct? When was it done? Completely obliterated?

This brain surgery stuff is a science, just not a perfect science

I’m kind of in the same boat with pain tolerance - considering, I suffered multiple bleeds & brushed them off as migraines. . . . What? The feel of a bleeding brain isn’t normal?! LoL :face_with_raised_eyebrow:

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@mike_az_21 they attempted a second embolism but feared I would be paralyzed again. So since I had recovered from the 1st stroke ( which also like you I thought my 5 blood clot in my brain pain even flying a bunch for spring training I thought was my migraines changing)
So we are in a Wait and See scenario and of course my dr who heads the department is getting older so I also fear he is going to retire. So I had my 1st embolism in Jan of 2012 which brought on my second stroke which thankfully was minor. Then I had my second attempt in May of 2015.
I am also deathly allergic to the dye they use for it so I am usually readily sick for 3-4 weeks post.


Is the pain/feeling in the area constant? How are you feeling now?

It’s been a decade, how has it been for you?

I’m just relating things to myself a bit, since I’m coming up on my 2 year post embolization anniversary

I was very lucky to not come down with any blood clotting - I thank my aspirin use for this prior to all of this

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@mike_az_21 I will call it the reg DAVF pain is a constant and I after my blood clot stroke CVST that left me also with constant head pain on the top of my brain kinda feels like when you get a bad sunburn on your back and someone slaps your back . So that’s worse than the reg DAVF pain.

This new pain comes and goes and it’s a wider area , and I have been falling a bit more .
It’s been 4 years since my last scans too and normally we do them every 3 years unless I have new symptoms.

I am treated by the head of the pain clinic at Stanford and they literally have tried Everything they can on me.
We do Botox every 3 months which helps where my actual pain is . I was doing liodocaine and ropivacaine shots in my occipital areas but now I am allergic to them. But I actually got a 3-4 weeks of complete head relief.
Then prior to the pandemic I was doing ketamine infusions which also helped.

The way my pain neurologist described it to me is the longer we let our brains feel pain then it thinks it’s normal so then that’s how we will feel forever. Cause I was afraid to try Botox since I am allergic to so many things.

You might want to ask for a referral to see a pain neurologist.

Hope this helps.
Hugs Angela

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Sorry to hear :confused:

I consider myself “a ok” - a solid 90-95% consistently. Pushing tripple plates on the incline weight bench at the gym yesterday - some, may consider that’s insane. Not me, I believe heavy working out/activity - physically strengthens the brain - so far, I have been good :pray:

Everything is manageable - the dull bruise like feeling where the onyx was injected would be a .25 on the pain scale of 1-10

Hey lady, totally off topic - if you don’t mind me asking - how old are you now?

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@mike_az_21 I really miss lifting weights I grew up with twin brothers and was always in sports and shattered my ankle one summer so I took weight lifting as a jr in hs and loved it but after my blood clots was told to stop and then I guess from the bad fall I screwed up my shoulder neck area and have something called TOS so I have to be careful with my movement on my left side.
I am 53 - When I had my stroke I was 43 and 44 when I had my first angiogram/embolism.
I would say the reg DAVF pain is maybe 2 where my stroke brain pain from the CVST stroke is a constant 6
That is so great Mike that you are still working out. Now I just do pilates and lift light weights and swim a bit. So glad you dont have a lot of pain!


I take every day, every workout as a true gift

Not many folk truly enjoy working out(but, I do) - I started when I was 30, before that - I only went to the gym to do cardio when I gained a bunch of weight in my early 20’s < I’d hit the treadmill for 45 mins to an hour 5-6 days a week to lose a solid 50-60 pounds - which I did, then I just came in for cardio 2-4x weekly

I got into weight lifting years later

I don’t know how long I will be able to, I’ve had so many past gym friends who had to stop due to injuries, anywhere from shoulder to mostly back.

I’m not stopping until I can’t - best way I can put it

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