Hi all!
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.
Sorry to hear that you are suffering from SCDS. I believe there a patient from Uk (@Aleabee ) who also suffered from this. Here is her story (First surgery scheduled Mr Axon)
You might want to be In touch with her if she had the operation or not. I wish you luck.
I am so sorry the plot has thickened, @Eagle1. You’ve been on my mind recently & I’d planned to check on you. It must be a relief to have a solid answer now as to the root cause of all your symptoms. Based on what you said, it sounds like the styloidectomies were an important step toward preventing further bone erosion by the IJVs so at least those surgeries weren’t unnecessary. There have been discussions about SCDS on the forum. Here’s a link to one thread that mentions it as possibly being related to ES:
Do you have a surgery date at UCLA or is there more testing that needs to be done? Is 70-80% the typical amount of relief a person gets from surgery for this or is that what’s predicted for you because your situation is so bad?
I really appreciate you sharing what you’ve learned. It may truly help someone else on our forum.
So sorry that after the Eagles surgery you still have issues & are facing more surgery…SCDS sounds nasty. Along with @Aleabee I’m sure we’ve had at least one other member diagnosed with it- I put it in the ‘ES Info- What Else Could It Be’ topic a while ago…
You’re right that jugular compression has been mentioned as a possible cause, I think it might have been mentioned by Mr Axon from the UK in a paper, & I think he did suggest this as a possible cause to @Aleabee (She was still waiting for SCDS surgery as far as I know, so might not reply; the waiting times for Mr Axon are horrendous right now)
Re the CCI, there have been quite a few mentions of this in discussion with some suggestions for help, so if you have time have a search…
Thinking of you
Hello Friends. I was just diagnosed with Semicircular Canal Dehiscence as well. The plan is to remove my right styloid first, to see if I get enough relief. Thanks for sharing your experience and symptoms. It is so helpful to know we are not alone. I, too, get dizzy/nauseous, from moving my eyes from one computer monitor to the next. (Among other things.)
Hi Friends. I have bilateral ES. Dr. Hepworth removed the right side August 2023. He also suspected I have bilateral SSCD, based on my CT as well as my remaining symptoms.
3 days ago, I had my right SSCD repaired by the dynamic duo: Dr. Gopen and. Yang at UCLA. . I was diagnosed with it bilaterally. I still have so much dizziness, brain fog and headaches. I expect those things to improve over time. I do have it bilaterally, which is not insignificant. Meaning I may have to address that in the future. But I have been in good hands with all of the surgeons that I dealt with regarding Eagles and SSCD.
Can SCDS be diagnosed with a typical head and neck CT, or are there specific protocols for testing?
I wonder whether I have this condition, but my symptoms may be fully explained by jugular compression and CSF leaks since the symptoms overlap so much.
I’m fortunate enough to be a patient of Dr Hepworth’s and have right jugular decompression and CSF leak repair surgery scheduled for November 11 (hoping it can be moved closer). I’ll be sure to ask Dr Hepworth to evaluate this during my next appointment.
Thank you so much for your update, @EaglesWin! Bilateral SCDS is unusual. I hope your present symptoms begin to subside as your body heals. It would be great if you didn’t need a second surgery, but based on experiences on our forum, bilateral problems often need both sides repaired for the best end results.
