Carotid Cavernous Fistula
 

Hi,

Last year, I developed a Carotid Cavernous Fistula and needed emergency embolization (coiling). After seven hosptializations and an additional unrelated cardiac surgery, I started to recover. I don't have any current symptoms except for migranes which I had before the surgery. I recently had an MRA of the brain with and without contrast done, and the results reveal that some vessels are dilated around the coil and need an additional angiogram to see what it going on. I am only 40 and have had multiple ailments that confuses the healthcare professionals. I am currently taking coumadin as I have a history of a DVT and a genetic mutation (Leiden Mutation) that makes my blood clot a little faster, and I have to come off it before the procedure. I am looking for other people who have had similar experiences, a CC Fistula or are on coumadin before having an angiogram, coiling, etc,. I am trying to be brave and focus on the positive but it's not easy. I thank you in advance for help and ability to share.

Sincerely,
teee

Hello,

I notice this message was posted a year ago and has not received replies. That's probably because there are rarely any patients with a carotid cavernous sinus fistula. I was diagnosed with this in July 2011 (at 62 years), had a cerebral angiogram with coil embolization in August 2011, and have been going through post-surgery issues.

The doctors tell me to avoid aspirin. Apparently the 62 coils they inserted are supposed to catch the blood and clot it, and thus close up the fistula. Aspirin would cause easy bleeding so it's a no-no at the moment. They also want to do a repeat angiogram to check on the fistula, but I've asked for a postponement.

I don't know if you are still perusing this forum. I understand how difficult it is to find someone who has had the same experience because an arteriovenous fistula is a rare condition. Hope all is well with you.