Styloid removal and VES stories?

Anyone who had JUST styloid removed for VES willing to share their story?

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Maybe Jules could volunteer :slightly_smiling_face:

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I had bilateral IJV compression from the styloids; they were compressing the IJV where it exits the skulls base & for quite a way down (my styloids were just over 4cms each), I didn’t have any issues with the C1 processes like quite a few members have.
I was getting intracranial hypertension symptoms- head & ear pressure, constant off-balance feeling, dizziness, brain fog, tiredness, pulsatile tinnitus, & some weird sensations of my brain being rolled up/ sucking sensations, other weird stuff, it had got quite horrible just before my surgery. After I had the first side removed, the symptoms reduced dramatically & I felt tons better. I had the second side done a year later, now I only get a little bit of head pressure etc if I’m really stressed & I did when we went on a long haul flight. I’ve been so blessed!


This is very comforting to read about your experience. Was it Dr Axon who did your surgeries Jules?

My symptoms sounds almost identical to yours, and my CT venogram shows bilateral IJV compression also, so I am in the process of seeking out surgery now with Dr Hughes who I see on 06th April.

Did you have any classic eagles symptoms Jules or purely vascular type?

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Yes, Mr Axon did both sides, it’s so frustrating that he’s not able to do the surgery very often now! I had nerve pain from ES- tooth, jaw, ear pain etc, pain turning my head, but not the common symptoms of something sticking in my throat or swallowing pain.

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Can I ask,

Did you ever suffer with tender spots at the back of your head or elsewhere on your head? I’m having some little lumps which are tender to the touch appear, which I suspect may be caused by increased pressure.

I also get very hot and red ears and sometimes back of neck appears very red. Sometimes even my cheeks are flushed and red when my head pressure feels at its worst.

Recently I’ve noticed a pattern of a better few days followed by a worse few days, which Dr Higgins notes in his research paper and I think may refer to increasing head pressure which may be relieved by a CSF leak down to normal pressure, and then slow increase again?

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What Dr. Higgins notes makes good sense. CSF leaks can be discreet enough that a person doesn’t realize (s)he has one but does note what you have - good days followed by bad days so the pressure/leak cycle could explain that.

Since the cranial nerves initiate in the brain, I expect increased pressure in the brain can irritate them. The nerves that could be causing the redness in your ears, back of neck & cheeks are the trigeminal & facial nerves.

I’ll let @Jules comment on the sore spots on the back of your head since that question seemed directed toward her & it’s nothing I experienced.

I’ve never had any lumps on my head, but have some tender spots which I think is actually nerve pain; the couple of places I get it follows the path of the Trigeminal nerve … Although not affected by the styloids themselves I don’t think, quite a few members have had occipital neuralgia , it might be because of tense muscles caused by ES pain maybe?

I’m sure others have mentioned flushed faces…
I think as @Isaiah_40_31 said I agree with what Mr Higgins suggested about CSK leaks.

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I have occipital neuralgia symptoms which I was told by Dr. Hauser, who treats my CCI, is caused my C1, C2 instability / nerve root compression


Is your occipital neuralgia at the back of your head? I have a constant frontal headache (and have done for over a year), but dont really have any pain at the back of my head like you would expect with occipital neuralgia.

Mine is at the back of my head and over my scalp. I also have pain in my jaw especially and at times, when chewing.