Hi I’m new on here has anyone had a carotid sinus fistula? I’ve not spoken to anyone else who has had one? Thanks
Welcome! I hope we will be able to help out a little here. If you use the search feature, magnifying glass in the top right corner you will find information. I did a quick few searches, and of course a little bit of google research…try searching cavernous carotid fistula, and CCF as well. Hopefully there will be some beneficial information available. We have some members who have had treatment both by Gamma and Cyber Knife, as well as embolization. Hope this is a bit of help for you. John.
Many thanks John.
Welcome!
I did find this short reference to CCFs by our colleague Madere from many years ago – before John or I joined this forum: Carotid cavernous fistula - #2 by Madere_dancermom
Where posts on the forum are before 2016 it is much less likely that you’ll find people still active here, as we moved platforms in 2016. The involvement of the sight seems common with your experience, however. I’m a DAVF patient myself.
It does seem like a very good idea to get checked out by neurology or neurosurgery: a strong pain in the neck is often enough a sign of danger, so get checked out promptly. If in any doubt, go to A&E.
Feel free to ask anything of us that you’d like. You don’t necessarily need an exact match to your situation to find common experience.
Very best wishes,
Richard
Thanks so much Richard that’s very kind of you to search for me. I’m currently sitting in A&E I phoned the vascular nurse and she said to come too.
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You’re in the right place. Well done.
It takes ages to go through A&E but its important when you’ve got serious stuff seeming to go on to get checked out. Nobody will criticise you for getting checked out.
Let us know how you get on.
Very best wishes,
Richard
Morning!
How are you doing today? I hope you got on ok with A&E.
Richard
Hi Richard,
Sorry not updated you. I was 47 hours waiting in A&E it was horrendous. Thankfully my scans were clear so the fistula is still sealed off and no bleeds. They had no idea why all the pain had flared up again. I’ve been back to my acupuncturist who always brings the pain down and that is helping. He’s treating me for inflammation of the occipital nerves in neck. This time it has brought on depression too which is hard to deal with as well but at least no bleeds. How are you?
Julie
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Oh wow! 47h is horrendous! We spent a total of about 19 hours in A&E/hospital with my wife for other things over two days a few weeks ago and that was bad enough!
It’s good that you got checked out and good that nothing serious found but always perturbing not to find an answer.
I am good, thank you. I think I’m most bothered at the moment by the repeating heatwaves. They are forcing me indoors rather so having told everyone that I much prefer summer to winter, I think I’m getting to the stage where I like about a fortnight in the spring and a fortnight in the autumn 
Hopefully I’m not as bad as that, really.
Health-wise, I had my op back in 2017. It took me two years to get to being ok and to believing that I was fixed but I’ve been good now for over 7 years: no looking back. While I was waiting for that operation was hard. I had increasing noise and increasing dizziness from my dural arteriovenous fistula because it was pumping blood into my right transverse sinus with sufficient force that I could hear the turbulent blood flow in both ears. And it got noisier and more impactful every month.
The two main things I found I could do were to wear a medical wristband that had my details on and my wife’s ICE number — so that if someone found me unwell, they might ring 999 a bit quicker — and I took up a hobby in order to stop me having too much time to think: I decided to build a radio-synchronised digital clock from first principles(!) Unsurprisingly, this required a decent amount of thinking, so I managed to distract myself with something instead of having too empty a mind to fill up with worry.
Have you got an appointment coming up or has your trip round A&E kyboshed any appointment?
Very best wishes,
Richard
So glad you’re ok now. I had the constant pulse noise in my right ear for a year that was bad enough but thank god the operation sorted that. No more appointments booked as neuro discharged me.
Acupuncture a big help. I use jigsaws to distract me as being with your own head is not good. Work is hard at times but I keep going.
Thanks for following up with me I appreciate it
Julie
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I’m honestly glad you got checked out. Deciphering how people are from written words is not reliable and often people complain of neck pain as a symptom of a brain bleed, so while you didn’t mention it in your post, you did mention neck pain in your profile and I thought it important that you do do a follow up with the doc sharpish. So while I didn’t want to hassle you, I did worry that you might be in trouble. It is sooo good to find you well!
My pulsatile tinnitus got noisier over time, as I say, to the extent of being like trying to sleep next to the washing machine when it is busy pumping water out. I worried about that decline until I finally got to the front of the surgery queue.
Jigsaws sound like a good idea. I guess there is a decent amount of thinking required to place each piece. I just felt it was important to keep my mind busy. Maybe I would still be able to worry while doing a jigsaw! I don’t know.
Really good to find you well. 
I stand by my previous incitement that if you have any symptoms that might indicate a stroke, always feel you can go to A&E to get checked out.
Lots of love,
Richard
Thanks Richard. You take good care Julie
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