I had LINAC (Linear Accelerator) radiosurgery in Dec of 2009 for a Cavernous Carotid Fistula. Are there symptoms when the AVM starts to close? Does it get worse before it gets better? Any help is appreciated.
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Symptoms tend to be unique for most individuals, but here are some generalities:
If you a have a bruit (where you can hear the blood flowing through your AVM), as the AVM decreases or closes off, the bruit might get quieter or go away. That’s what happened to Chari.
An AVM lowers the blood pressure in the area, so when it’s shut off, the pressure will increase, which could lead to headaches.
Ron, KS
Hello Ron, thanks for the info. Not many people know what these things are so it is nice to have someone who is familiar with it and understand.
Ron, KS said:
Symptoms tend to be unique for most individuals, but here are some generalities:
If you a have a bruit (where you can hear the blood flowing through your AVM), as the AVM decreases or closes off, the bruit might get quieter or go away. That’s what happened to Chari.
An AVM lowers the blood pressure in the area, so when it’s shut off, the pressure will increase, which could lead to headaches.
Ron, KS
hi Thomas,
I have weird symptoms (drowsiness and pain behind face, they always go together and I can immediately knock the symptoms down by squeezing lower back muscles - I also have some eye pain on the side where the pain is). First thing to be ruled out in my case was a CCF. What a tongue twister. And it was ruled out indeed (MRA). But I’m not sure I trust this 100%.
Could you tell us more about your symptoms? They vary enormously I gather. You’re pretty unique in that few people anywhere on the internet have talked about their CCFs.
The angiograms don’t sound so nice. I have not had any. I’m trying to figure out why. One ref I found is http://www.springerlink.com/content/a3624p021518j1jw/ : even with the biggest MRI cannons, there’s a lot they can’t see. I don’t want to have any disorder like this but I’m clearly at risk in some sense. Several years ago a bout of the same stuff resolved itself, but this time around I’ve been under for two years, rather suddenly and without explanation so far.
Keep us up today,
Sudden
Mostly I have sinus pressure and intracranial pressure, sometimes a slight burning sensation on the right side of my neck. I used to have bruit and a very swollen eye but those have gone away. Hard to concentrate sometimes because the pressure is so great. Thanks for your info.
Sudden DumbAndPainInFace said:
hi Thomas,
I have weird symptoms (drowsiness and pain behind face, they always go together and I can immediately knock the symptoms down by squeezing lower back muscles - I also have some eye pain on the side where the pain is). First thing to be ruled out in my case was a CCF. What a tongue twister. And it was ruled out indeed (MRA). But I’m not sure I trust this 100%.
Could you tell us more about your symptoms? They vary enormously I gather. You’re pretty unique in that few people anywhere on the internet have talked about their CCFs.
The angiograms don’t sound so nice. I have not had any. I’m trying to figure out why. One ref I found is http://www.springerlink.com/content/a3624p021518j1jw/ : even with the biggest MRI cannons, there’s a lot they can’t see. I don’t want to have any disorder like this but I’m clearly at risk in some sense. Several years ago a bout of the same stuff resolved itself, but this time around I’ve been under for two years, rather suddenly and without explanation so far.
Keep us up today,
Sudden
I had four angiograms and they pinpointed exactly where the ccf was.
My AVM recently closed of and was confirmed shut down via angiogram. What Ron said I got as well. Bruit or that whooshing sound. I could actually feel at times something going on inside head over the 12 months it took to obliterate. There we’re about 4 weeks out of the year we’re I had headaches that woul not go away with tylonol. I felt a sharp pain once in a while that felt in the same location as where my AVM was located. I could tell the Gammaknife was doing it’s job so I welcomed these symptoms and said to myself bring it on and shut down AVM, and it did rather quickly. Ended up in the ER At the final stage because my last headache would not go away and just kept worse and worse to the point I could not handle the pain. Turns out I had swelling from the AVM breaking down and dieing in my head. Im now tapering off the steroids which has almost cleared up the swelling as it looks much better on a follow up MRI I just had.