I hope this evening finds you as good as you possibly can be. It has been awhile since I have been on the forum and have so much new information to share with you all.
Long story kind of short, I have had both styloids removed and no resolve in symptoms. I have since been diagnosed with AtlantoAxial Instability (AAI) where my C1 over rotates when I turn my head to the left. Dr. Henderson suggested a C1-C2 fusion to stop the excess movement.
Then I got the flu…sitting in the quiet while sick I could hear this sound that sounded like sandpaper when I would move my eyes left to right and it made me severely dizzy. It did not make the sound, or make me dizzy, when I looked up or down. I reached out to the cervical instability group of fb wondering if this had something to do with my AAI (even though I was not turning my head at all when moving my eyes from left to right). So many people reached out and said to be evaluated for Semicircular Canal Dehiscence (SCDS).
My previous ENT, before my Eagles Syndrome Diagnosis, ordered a CT of the temporal bones and sure enough, I have bilateral SCDS. I have holes in the bones between the inner ear and the brain. I sent my scan to UCLA where they do 100 of SCDS surgeries a year and I spoke with the neurosurgeon virtually. He couldn’t believe that this was the first time in over a decade that I had been told of my condition. To say I was emotional and my thoughts all over the place is an understatement. He said that I have all of the vestibular symptoms of SCDS as well as a stage 4 hole in the right ear(8mmx2mm). He also said that I will never be 100% again but that it is possible to get 70-80% relief. There is always the chance that things could get worse and this terrifies me…but so does living like this. I am still in the midst of figuring out next steps, and quite a mess to be honest but also grateful the most likely culprit has been found.
For those of you who have not found relief from ES surgery, I urge you to look further into SCDS. You can even YouTube SCDS UCLA and listen to them describe the symptoms.
I have heard there may be a correlation between ES and jugular compression causing the Semicircular canal bones to erode away. I would be so interested to hear anyone’s input on this, or if you yourself have dealt with this awful condition. I literally feel so claustrophobic in my own body and can’t seem to get away from the awful headaches and boat rocking sensation etc.
I wanted to write this to give new information that may be helpful to someone else. I could also use insight/help from others who are familiar with ES and Semicircular Canal Dehiscence.
Also, I would love to hear from others who have been diagnosed with C1-C2 instability and what you have done to help with it.