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Is pulsatile tinnitus a normal part of CVST healing? Other?

Posted by jmarie711 @jmarie711, Dec 4, 2024

I was diagnosed with CVST left transverse and sigmoid sinuses extending into the jugular on June 21, 2024. I was started on Eliquis. A couple of months ago I began hearing a slight thumping sound in my left ear. It was my heartbeat. It has progressed to a whooshing/thumping, and is worse at night when lying on that side. I just had an MRV today so it will be interesting to see how things compare. I know that the clot is still there because my Hematologist ordered a CT without contrast in October, and that was really all it told us. I had to get my Neuro to do the MRV. It looks like maybe others have experienced this? I'm just wondering if it's a normal part of the process of the clot dissolving, or if it means something else. It was said that the clot was caused by oral contraception.

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Lisa Lucier, Moderator | @lisalucier | Feb 16 11:43am
In reply to @jmarie711 "Hysterectomy went great! The best decision I ever made. We found out that the noise in..." + (show)
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Hysterectomy went great! The best decision I ever made. We found out that the noise in my ear was caused by a Dural AV Fistula which was brought on my the Cerebral Venous Thrombosis I had in June 2024. So last May I had a DAVF embolization done. There ended up being two very large fistulas and a recent MRA showed a small amount of blood flow getting thru one of the coils. I can sometimes hear a faint heartbeat in that ear when laying on my pillow. So we will have to go back in and fix it. They also found that I had an Endolymphatic Sac Tumor in my right ear which I lost my hearing in over a decade ago when I was diagnosed with Menieres Disease. It's suspected that I was misdiagnosed. So ultimately that will have to be removed. Right now we are monitoring it. I repeat an MRI in August. Thanks for checking in!

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@jmarie711 - glad that the medical team figured out that that noise in your ear was due to a dural AV fistula brought on by the cerebral venous thrombosis.

How was the DAVF embolization for you? Would you do it again?

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jmarie711 | @jmarie711 | Mar 5 11:51am
In reply to @lisalucier "@jmarie711 - glad that the medical team figured out that that noise in your ear was..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

@jmarie711 - glad that the medical team figured out that that noise in your ear was due to a dural AV fistula brought on by the cerebral venous thrombosis.

How was the DAVF embolization for you? Would you do it again?

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@lisalucier It was pretty rough. There were two very large fistulas that had pretty much "commandeered" the whole sigmoid sinuses. My right side had already basically stepped in so to speak. Let's just hope nothing ever happens over there. I don't know what we will do then. He placed 11 coils in there. When I woke up after the procedure I was so dizzy that I couldn't open my eyes. Just horribly sick. It was like that for about a day. Then when I finally did open them I was experiencing trouble with my vision. Double vision and tracking issues. Ultimately we discovered that during the procedure I'd had 5 TIA's. So there was a bit of recovery period for that. It was a pretty miserable time. But to answer your question, yes I would do it again. Honestly I really didn't have much of a choice. It wasn't just the dibilitating noise I was living with, but the fistulas were a bit of a dangerous situation. I couldn't leave them like that. I just had another scan done. Like I said, there is still the teeny tiny amount of blood flow getting thru in an area towards the back of my head. But it's stable from a couple of months ago. He has hopes that it will stay that way or just finally fill in/close up. I'll get another scan some time in September.

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