Hi all, I was doing really well for over a year after right side partial styloidectomy for Vascular Eagle Syndrome.
Unfortunately, last week I experienced a sudden, piercing headache on the left side and after a night’s sleep, woke up with blurry vision on that same side. I went to the ER and had a CT scan (without dye - I’m allergic and it would take a few days to do the required protocol). The diagnosis is some kind of nerve irritation related to inflammation and Eagle Syndrome (which I have on both sides).
I was given some IV medicines which improved my vision but a week later, I’m still experiencing one-sided headache, on and off blurry vision (not as bad as initially), and general feeling of unwellness. The neurosurgeon is trying to decide what to do next by way of tests and specialists.
I’d love any advice - the vision symptom was totally new and it was unexpected to have sudden symptoms on the opposite side from surgery.
I feel like I am beating a dead drum but you seem a perfect candidate for this:
Maybe you can get one. Seems like a lot of Doctors don’t even know about this kind of scan.
I would be trying to also get to an eye doctor who can measure pressure and look inside your eye, etc.
I would think your Doctor would order an MRI to look for strokes, brain bleeds, and other possible issues.
Ask him about a Transcranial Doppler to show what is happening to blood flow when you move.
Maybe your partial surgery wasn’t enough to fix problem.
I can tell you that when I was doing physical therapy they had me doing something that caused a Cervicogenic type headache. It really scared me. I had never felt that sharp pain before in my life. I have seen references that it can cause blurry vision and other references that it doesn’t. Mine didn’t. It went from base of skull in a C shape up my head into the temple on one side. The side opposite my most problematic styloid. This didnt happen during physical therapy. It was after a few sessions.
You might investigate to see if something is happening with your neck as many of us seems to also have neck issues.
I think people should be aware of the issue even if that isn’t what is happening to you.
So, ES on both sides but only partial surgery on one side? Only part of the styloid was removed? Nerve issues can definitely happen with ES and sometimes another surgery is needed to take out more of the styloid. Please share the imaging when you can and it might be best to reach out to one of the more experienced ES surgeons that removes at skull base
Who did your surgery? What was the reason for only doing it partially? Was it external surgery?
Something is clearly happening in a scary way. Even if you cant have MRI contrast they can still get good info on strokes and brain bleeds without it. I cant have Mri contrast but can do Ct contrast.
I am kind of mystified as to why they havent immediately sent you for an MRI.
Oh , you are from Canada …but even there they should have done an MRI for your symptoms.
There is a poster here now from Canada who is going to Turkey for surgery next month.
It’s not uncommon with bilateral ES for symptoms from the remaining styloid to become problematic once one styloid is resected, however, symptoms onset isn’t usually as dramatic or fierce as what you’ve experienced. I think the others who’ve replied to your post have offered some good suggestions for follow-up care.
If you’ve had good results from your first surgery, then probably enough of your styloid was removed, unless the recent CT scan was again showing bilateral styloid elongation in which case you may need a revision surgery for the right side which was suggested by both @JugularEagle & @Andy89316. More likely though, you need to have a left styloidectomy to help resolve the symptoms you currently have.
So sorry that you’ve had this crop up with your other side…must’ve been scary
I think the others have given you plenty of advice, I would be concerned given that you still have a headache and some visual problems that it could be a vascular ES symptom- it is very rare but occasionally it can cause problems with the internal carotid artery, so some sort of contrast scan would be helpful…unusual the you have an allergy to the CT contrast dye, it’s usually the MRI one that people react to! Would be good to rule that in or out…
I hope that you feel better soon and can get some answers
Thanks! I had carotid impingement and the surgical team felt it was too risky to take more than 1cm. We only looked at the one side where I was having fainting symptoms.
Do you still have the impingement because your surgical team felt it was too risky to operate???
If so, that is your lead in your Doctors visits.
And why you should get an MRI.
If you do still have it, it might be worth a televisit with Constantino to see what he says. Yours might be a case where you can get Canada to pay for US surgery due to risk of immediate danger to your health.
