Cavernous Sinus Fistula

Hi,

I am new to this forum and thought I share a little of my story...I suddenly developed a pulsating tinnitus (pulsating sound) in my right ear while being in the hospital for a DVT (clot in my leg), March 2010. Working within the healthcare industry, I knew something was terribly wrong, yet it took 9 hours before I saw a neurologist and a couple of days for a MRI to be done. I was told I was fine and was released from the hospital. I still had the pulsating tinnitus and knew that I wasn't fine. The next morning, I developed right side ptosis (drooping of the eyelid), and I had double vision. I was taken to the hospital via ambulance and was diagnosed to have a type of AVM , a Carotid Cavernous Fistula, that was embolized (coiled) two days later. This is only a very small part of my story...

I am glad I found this forum as I seek others with similar experiences. I try to focus on the positive and take one step at a time but as most of you know, that is not always easy. Has anyone else had a diagnosis of a Carotid Cavernous Fistula?

Sincerely,

Isabella

I have dural fistula

Yes I had a cc fistula, I have a similiar story to yours however misdiagnosed for 10 years… woke up one day and the left side of my face was paralyzed and I went to the drs… many of them all of which diagnosed me with Bells palsy… about 4 months later I started hearing the bruit in my ear… again ran to doctors… was told all was normal and that many people hear their pulse in their ear. Then I started months later getting nose bleeds… the facial paralysis cleard up but the recurring nosebleeds continued and the sound in my ear was unbearable. Long story short I had a nose bleed that wouldn’t stop… went to ENT doctor to stop it and told him about the sound in my ear… he also expected nothing but ordered the MRA … there it was found… I was sent to 2 brain surgeon who wouldn’t touch it and sent me to Wills eye Dr Rossenwasser… where he glued it and sent me home 3 days later… no complications and its been 12 years. Recently I have had some nosebleeds we think are unrelated but I will be going for an MRA next week to check on it. I was told back then it was cured for a lifetime… but we now know they can come back… I have been healthly up til now so we will see.

Hi Q,

Thanks for your reply and sorry for your troubles. I’m sending you positive thoughts and prayers, and hope that your MRA goes well. Hopefully, it is just “normal nosebleeds” that you are having. I have had many vascular events and am facing more interventions, and it is not a fun place to be. I try not to let it consume me but its difficult at times. I’m in NJ, are you in PA? I looked up DR. Rossenwasser and I think he is in PA. Hang in there. Stay in touch and let us know how you do.

Stay well,
Isabella

Isabella I am in NJ also … Audubon NJ… would love to talk by phone sometime. If you would like to talk email me you phone number would like to know more about your situation. My personal email. ■■■■■■■■■■■■■■■■■■■■■.