Unfortunately your story is not unusual on here… lots of members find it takes them years and many doctor visits to get their diagnosis, but pleased for you that you’ve got that far!
Before my op I was getting numbness in my cheek and jaw line; that’s been resolved with surgery, thankfully.
The growth rate of your styloids is pretty incredible though! (Sometimes the measurement’s not always that accurate, and some radiographers/ doctors also measure calcification of the ligaments included with the styloid process, so it could be that’s what’s happened otherwise.)
It’s interesting that the doctor at Mayo would have operated, as quite a few members have found they’re not interested in treating ES at all. Check out the doctors list for more doctors if you need to, in the Doctors Info section.
Hope it doesn’t take you too long to get a date for surgery!
Thanks for your response! Today has been difficult with the symptoms that I
have! I am thankful that I am going to two specific doctors that specialize
in this illness on the 15th and 16th for an honest second opinion. I wasn’t
impressed with the doctor from mayo because he has only done 10 of these
surgeries and what if mine is more complex and he can’t handle it??? You
know what i mean? Well I feel.good about going to LA for this. My left eye
today as been torture along with the shakey vison from whatever nerve is
being compressed. I also have the stabbing feeling of the something in my
neck up to my throat…I hate it!! Did you have surgery? I didn’t read all
your threads but found it interesting that you have also had eye symptoms.
I look.forward to hearing from you again! 
Duh! I see your surgery now… blame that on the vision disturbance
I found I also have Ehlers Danlos causing POTS so that causes my heart rate and blood pressure to jump around a lot and shortness of breath.
I’m glad to hear you have 2 Dr apt that you feel good about in LA. I haven’t seen anyone on here with LA specialists before - you are traveling far. If you find you need another CA doctor to see many people on here have had their surgeries with Dr. Samji in San Jose CA.
Best of luck
Hi all - I have very recently been dx with Eagle syndrome. I do believe it is the carotid artery type. It started with chronic headache and abrupt onset of vertigo 19 years ago after a long plane trip. I would say that the vertigo and headache have been primary over the years but three years ago everything got abruptly much worse (while I was skiing). Vertigo/balance difficulty/pain/headache/neck pain/autonomic dysfunction (heart palpitations, blood pressure all over the place, feeling like I was going to faint, etc.)/numbness in face, hands feet/changes in my fingernails!/etc etc. I kept working through it all (somehow) and that would not have been possible without the help I got from a developmental optometrist looking beyond my 20/20 vision and prescribing me a pair of glasses with prisms. Although the MRI did not reveal any “injury” she treated my symptoms and it helped me tremendously (with vertigo, driving, reading, bright lights etc). So…I would highly recommend it to you all that are experiencing visual disturbance. It didn’t take care of all the rest though so I am ready to push for surgery! Good luck to you all!
WOW! That’s fantastic information, seiders50. Thank you so much for sharing it! Glad you’re now ready to deal with the root cause of your problems. Hopefully surgery will completely resolve your symptoms & all your struggles of the last 19 years can become ancient history! ES surgery definitely made a positive difference in eliminating my vascular symptoms.
Thanks for that- I’ll mention it in the ES Info when I get a chance to do some editing. Best wishes for your surgery!
I get vertigo as my ES symptom is pressure in throat and I tilt head down while looking up… Has any Eagles had that???
YES! I had trouble w/ vertigo when my head was in certain positions. That’s gone away since my surgeries (4 years ago). If your styloid process &/or calcified stylohyoid ligament is pressing on any vascular tissues then head position can make a huge difference in the severity of your symptoms. In some positions you will have less or no vascular compression & in others it can cause up to complete occlusion of the vessel(s) in question.