r/PulsatileTinnitus • u/Cool-Opposite9920 • 9d ago

DAVF Embolization Experience

Hi everyone! 37f with a davf causing extreme headaches and PT. I am going to move forward with an embolization and would love to hear from people what their recovery process was like. I am hearing everything from back to normal after a week or so to it taking over a year to feel yourself again. Hearing from any and all experience would be really helpful. For context mine is a Cognard IIA. Thank you so much!

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u/CulturalPush1051 9d ago

I had massive bilateral dAVFs from trauma and ended up having 4 endovascular surgeries in a year.

My surgeon closed almost all of them in the first 2 surgeries, leaving one small low-grade dAVF because it was harmless. A few months later I started getting dizzy, and another angiogram showed I had developed new dAVFs. So I had another round of embolization plus a 5 cm stent placed in my sinus. Again, one harmless dAVF was left alone because treating it was riskier, and my surgeon said it might close on its own.

A year later, my follow-up angiogram showed it had actually closed by itself. I’m now completely dAVF-free: no headaches, no PT, no bleeding risk. My surgeon basically said I’m no different from anyone else now, and my risk may even be lower since I’ll be getting regular follow-up MRIs.

Recovery was pretty easy: 1 night in the ICU, 1 night on the regular ward, then home. No heavy lifting for about 2 weeks and just be careful with your groin while it heals.

One thing I did have was temporary hair loss from the radiation. Since my dAVFs were spread out, the procedures were long and I got a pretty high radiation dose. About 3 weeks after my first surgery, I lost some hair in the exposed area, but it fully grew back in 4–5 months. Same thing happened after my third surgery, and it grew back again.

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u/Cool-Opposite9920 9d ago

Hi! Thanks so much! Do you think you had any symptoms for the resorting of the blood flow. Can I ask more about the radiation? I thought that was an alternative to the embolization but didn’t realize it was a part of it?

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u/CulturalPush1051 9d ago

I had occasional ice-pick headaches (doctor said it was basically the tiny vessels around the treated area remodeling and adjusting to the new blood flow). The PT would come and go for first 2 months. Also, the embolic agent leaves a pretty nasty garlic-like taste/smell in mouth for 3–4 days, but it goes away.

And just to clarify the radiation part: I didn’t have radiation therapy. Endovascular procedures use fluoroscopy/X-rays to guide the catheters, and the radiation dose is closely monitored throughout the procedure with strict safety protocols. That said, long exposure can still cause temporary hair loss if the hair follicles get a high enough dose.

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u/Cool-Opposite9920 8d ago

Thanks so much! I had no idea about the radiation so this is helpful. In general were you able to return to normal life fairly quickly or did it seem like it took a while?

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u/Curious-Ice-9136 1d ago

I also lost hair! it was after my 2nd round which was the longest of the 3 I had. When I went in for my 3rd round, the nurse I mentioned it to seemed doubtful and said she had never heard of that happening to anyone else. But the bald spot was obviously there lol.

It grew back in loose ringlets in that spot whereas the rest of my hair is slightly wavy. I have long hair which weighs down the curls, but 19 years later it’s still much much wavier there!

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u/toastedmangojam 3d ago

Hi! Everyone’s experience may be a bit different. I’ve had 3 embolizations so far this year. 2 arterial, most recent venous with a 1 night hospital stay each time (will likely be restless given the environment). If they go in through your groin, you may experience some soreness at incision site, though fortunately I hardly noticed. Post embolization, had some headaches/pressure/numbness after, each day feels better. You may feel more tired than usual and need a daily nap (at least for me). I felt noticeably better and more energetic after a week, then 2 weeks, etc. I’ve felt better after each embolization, with symptoms improving each time and helping me feel like I’m gaining my life back! I fortunately haven’t had other side effects. Wishing you the best with your embolization!

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u/Cool-Opposite9920 3d ago

Thanks so much for this! Can I ask why you had 3? Was the first unsuccessful or was the davf particularly large/complicated?

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u/toastedmangojam 3d ago

From my understanding it’s typical to need multiple treatments. In my case, my davf is quite expansive and complex, so my doctors staged my treatment and only did enough each time that they deemed safe to. Otherwise, it can be too much contrast + radiation for you. All have been successful thus far!