Eagle Syndrome - Online Support Group

Continue to have symptoms 2 years after

Hi Mike

I’m new here but I have symptoms very similar to yours. I haven’t had surgery yet. My CT showed styloids at 3cm bilaterally and ossification of the ligaments on both sides. I live in Canada and have a wonderful caring ENT but his experience with Eagles is limited. I’m going to send my scan to Dr Samji and maybe Dr Cognetti too for their opinions. It’s interesting you talk about possibly virus. Besides Eagle this if one of the other things I wonder about. I get itching and pain and rashes but my rashes don’t look like typical shingles rashes so drs can’t diagnose it as that. I’ve started to get done oral lesions lately and have been prescribed oral antivirals but unfortunately once these viruses are in your nerves there is not a lot you can do about it other than trying to suppress them. If you ever had chicken pox or had mono then you have these herpatic viruses inside you forever. I had chicken pox as a child and I do keep testing positive for reactivated EBV. Is this the cause? I will never know but I feel I have to close the loop on the Eagles stuff and in the meantime implement as much anti viral stuff as I can to my life. So weird about the itching we both have. I’ve had it in other areas too and had have severe nerve issues all over my body. Take pictures when the rashes appear and maybe ask for some HSV testing, EBV testing, VZV testing all must have IGM and IGG. Just a suggestion. Finding a functional medicine dr can help you get the correct viral testing.

Hi Annieloo,

I see a functional med doc. I also tested positive for active EBV earlier this year & am on a regimen of herbal tinctures to try to knock it out. She said it’s a 6 month process. I started on the regimen after diagnosis but fell off the wagon. Am trying again now. I don’t have itching or rashes but just some non-descript aches & pains & occasional fatigue. Not sure the EBV is really causing any symptoms except maybe something very low grade for me. FYI - I had all the childhood diseases & recently had the two Shingles shots which are now recommended to help prevent Shingles.