I know there has been some discussion about lingering high pitched pulsatile tinnitus and dizziness after surgery. Those are my 2 ‘left over’ symptoms. On the last webinar the consensus was that the surgery often eliminates low pitch pulsatile tinnitus as it tends to be a venous hum that goes away after decompression but that high pitch isn’t generally helped by surgery. They also said that lingering dizziness is common but tends to improve over time. Left with the 2 symptoms I went back into the medical world in search of a cause and solution. The IR angiogram I had prior to surgery proved that there was nothing dangerous (like a fistula or tumor) causing the tinnitus but could not point to a cause. I finally ended up at Dr. Sharon’s office. He is a UCSF neuro otologist. It took 3 months to get an initial appointment and an additional 3 months to get the follow-up appointment to go over my testing results.
So it turns out I have a carotid cochlear dehiscence. The carotid artery is supposed to be encased in bone right where it passes by the inner ear and for me the bone is absent. So the high pitch pulsatile tinnitus I have on my right side is actually the sound of blood moving through my internal carotid. Dr. Sharon believes that my dizziness is a result of my inner ear hearing the sound, impacting the vestibular system and my brain not being able to make sense of the signal. So basically the noise of it is causing the dizziness, called Tullio phenomenon. It is interesting that many of us in the Eagle’s community have some sort of bony erosion in the inner ear.
Unlike SCDS, it can’t be treated surgically because it is too dangerous as the possibility of having a stroke during surgery is too high. There is some relief in understanding what is happening. Dr. Sharon believes I can help teach my brain to be less grumpy about it via a new type of vestibular rehab they are doing at UCSF using virtual reality. I have my first session last month and I’m excited to give it a try.
Anyway, in case there is anyone out there with similar lingering symptoms, I thought I would post a possible answer.
