C1 vertebra and styloid ligament surgery

Hi, I’m new here. I’m just wondering if anyone has had surgery on their C1 as well as styloid?
To cut a long (17 years) story short (though not very short…apologies) I get very severe headaches that develop when lying down, or after short periods of turning my head or bending my neck to look down. In addition, the left side of my head constantly feels heavy, I have a ‘full’ left ear, a high pitches whistle or my heartbeat in my left ear, numb/twitching left face, and the left side of my throat is sore, clicks when I swallow and feels like something is stuck. I also have pain in the left side of my neck and down under my collarbone. Noise doesn’t bother me much but vibration does and my own voice hurts my head (which is really difficult as I’m a lecturer…). During the headaches I can’t talk, and move really clumsily. I can’t lie down and get very restless. My BP swings wildly up and down…often to impressively high levels and I get a lot of palpitations and missed beats. I’ve been taken to A&E twice with suspected TIA.
I’ve been seen by Maxilofacial, ENT, Neck and Head, Vascular, Neurology and Neurosurgery…with mixed levels of interest and no diagnosis. In desperation I finally sent my scans off to a private radiologist who thought he knew the problem and referred me to a more specialist one.
From having venograms and venoplasties etc with this specialist (who is just fantastic) I understand I have larger vessels and more blood flow on the left side of my cranium…but the outflow on the left is too narrow and my jugular is being compromised by C1 and by my left styloid ligament, which is quite calcified. So the plan is to put in some stents (had one done so far) and now the suggestion is to do some of this ‘skull base’ work. No one has ever said it’s Eagles, but when Googling styloid surgery I found you lot! I’m guessing it’s more a blood flow issue as I don’t think my styloid is too long, and it’s just all a bit tangled up. My apologies for gatecrashing this group…but it’s the nearest I’ve come to people with similar symptoms.
So I just wondered if anyone else has had other skull base work done as well as their styloid? And if so what’s the recovery like please?

1 Like

I’m glad you found the site, and you’re not gatecrashing at all- you’ve mentioned that your left stylo-hyoid ligament is calcified- & that is ES, even if you’ve not got a formal diagnosis! (ES can be caused by either elongated styloid processes, or calcified ligaments, or both)
There have been a couple of members who’ve had surgery for compression of blood vessels and/ or nerves between elongated styloid processes & large C1 processes, so you’re not alone, & it is rare…
If stenting isn’t helping, then it would make sense to remove the structures compressing the veins, whether that’s calcified ligaments or the C1 processes.
If you use the magnifying glass icon you can search for anything specific in discussions- I had a quick look & there was this one:

There’s another discussion too- no updates to them though so I’m not sure how the members are doing, but you could try private messaging them to see?

As you’ve observed, your symptoms are all symptoms that align w/ an ES diagnosis. I wouldn’t be surprised if just removing the calcified stylohyoid ligmament makes a HUGE difference, but since I’m not a doctor, and don’t know the role enlarged C-1 processes might play, it’s best to go w/ what your surgeon suggests . It is possible your vagus nerve is being irritated by all that’s going on as it plays a significant role in heart activity. The glossopharyngeal nerve also affects speech so there might be some irritation of that one as well.

I had my calcified ligament and styloid shortened about a month ago and feel great!


That is great news! I have very similar symptoms to what you were experiencing & it is terrible! My blood pressure also spikes so I can get quite dizzy. This is very encouraging. Good luck in your future :grinning:

Wonderful to hear Tmcasciano, and really happy to hear! Did you have internal or external surgery? xx

External surgery

Thank you for your reply! Just had a look through your posts, and you looked great after surgery.

Did Dr Taylor or Dr Cognetti perform your surgery? Also, did you have any ear or neck pain prior to surgery? Finally how long did you find you needed to have off work and before you started feeling better. Really appreciate your response. Sending you much blessings x

1 Like