Oh dear, hope that Dr Annino is more helpful! Doing a craniotomy if it’s the styloids causing the compression probably won’t help!
@NH48 When I had my styloids removed, the code that was put on the bill for my medical insurance was for a craniectomy. Most insurance companies don’t acknowledge ES but they do acknowledge a craniectomy & will pay for that. Definitely less extreme than a craniotomy!!
We have a current member who also has IJV compression & had ES surgery done by Dr. Annino. He still has his vascular compression because not enough styloid was removed to relive the compression, so he’s going to see Dr. Hackman in NC for revision surgery. This is not to diss Dr. Annino as we have many members whom he has helped, but in vascular cases, he is perhaps not the best candidate as a surgeon.
I saw Dr Annino on the 25th, he explained from all my records that I needed a cat scan with contrast. Well the results are in and it shows the left styloid 3.4 cm long compressing the IJV. I guess surgery is hopefully justified. We meet this coming Monday. 
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Hi @DeniseD
I just wonder how are you doing after the surgery after all this time.
I had my left styloid trimmed back in 2014. I was fine for a while but the symptoms come back and it’s getting worse now. I have headaches every day, which I think it might be Occipital Neuralgia. The pain comes from the base of my head and it goes up on the left side like a dull constant pain. I also have intermittent pain on the side of my left face.
I hope you are doing okay
Welcome back @needanswers, but I’m sorry for the reason you’re here. Some of our members have had styloid regrowth several years after their styloidectomies. Sometimes this happens because the styloids haven’t been cut back far enough & others the cause for regrowth is unknown. We’ve speculated that the original mechanism that caused elongation in the first place is possibly still at play, but we really don’t know that for sure. As you know, there are a lot of unknowns w/ ES.
I would recommend you ask to be referred for a new CT scan to evaluate your styloid lengths as the results could help identify the cause of your current symptoms.
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Thank you for writing your symptoms so clearly. This is exactly what I am going through now for 3.5 years until finally someone noticed the stylohyoid. The spaciness, drunken wooziness, imbalance makes you feel like you are not in your own life anymore. Like you are in a horrible movie or dream almost always. You can’t think sharply anymore. Nighttime seems better somewhat; why I have no idea.
The worst thing with ES is the psychological toll. Everyday I question whether it is worth being alive like this. But the future is unknown and people need you, so one must endure. Sometimes survival is man’s meaning, and it is enough.
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Sorry that you’re feeling so grim, hang in there, I hope that you can get some treatment … some members have found being on an anti-coagulant helps with the jugular vein compression symptoms, perhaps you could discuss this with your GP/PCP?
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