I thought I could fly :)

I have ataxia and tremors and have been diagnosed with vascular eagles. These symptoms aren’t talked about and aren’t largely recognised since most doctors believe only the throat, ears and neck are affected. A lot of doctors don’t even believe compressed jugular veins are a problem at all.

I don’t understand how you don’t meet the criteria for eagles? Your styloids are very long and you also have symptoms. Even small styloids can cause extreme symptoms so the length shouldn’t define whether someone has eagles or not.

You just need to find the right surgeon to analyse your scans and to listen to your symptoms.

Maybe being turned down by these doctors is a blessing, because you wouldn’t want to be in their incompetent hands anyway.

Keep going. You’ll get there.


Thank you all for encouraging words!
I just spent 10 days at the neurology clinic where all sorts of tests were done. On the last day, I managed to convince the neurologist to do another contrast-enhanced CT to look at the styloids too. I also showed her a video I found on this page describing most of my symptoms. CT did not show any abnormalities, but I noticed at home that they did CT angiography and not venography …
I didn’t knew tremors could be also because styloids.

Did you get a lumbar puncture with measurement of the CSF- Pressure?

I had lumbar puncture, but not sure about measurement… everything was normal, I was told.

I feel for you- such obviously elongated styloids, with the symptoms of ES & they won’t diagnose you?! Would you be able to travel for surgery elsewhere in Europe? If so, maybe you could email or ring doctors on the list to see if anyone would help you? We do also have names for doctors elsewhere in Europe who’ve written research papers who might help? & @Eaglefatigue’s suggestion of trying Kjetil Larson to evaluate your scans might be an idea.
Sending you a hug :hugs:

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I can’t travel for now, and my English is not good enough for Skype appointment :slight_smile: Thanks for the hug! :hugs: :hugs:
I got my last CT scans with contrast. Left side looks normal to me, but right one… not sure. Does this look like anything could be compressed?

It does look like there’s compression, yes, by the C1 process & the styloid. Your C1 vertebrae looks a little off kilter too…others on here are more knowledgeable abut the anatomy so hopefully they can contribute too!

Thanks Jules!
I’ve already found a surgeon who can remove this stupid bone. :clap: It will cost around € 3,000 for one side.
Just checking here if anything wrong is seen on this scans, othervise he wont do it either … I guess.

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I am so thrilled that you’ve found someone who will remove your styloid!! That is AMAZING NEWS!! Your English seems fine as you communicate well here, but perhaps you’re using Google translate or some other translation devise.

I hope whomever you’ve found to do your surgery is someone you can communicate with well. Your situation looks pretty straight forward to me based on the images you posted yesterday. Your styloid looks long & pointed! Your atlas does look elevated on the left side, but that could have to do w/ your head position or from the fall onto your head all those years ago, it is possible the fall slightly changed the position of your atlas at that time. I don’t think that’s a problem that should prevent ES surgery though.

Please let us know how everything goes once you have your operation. :hugs:

Great that you’ve found a surgeon!