Ok so I was wondering if the Eagles is causing my TN because of it Compressing my trigeminal nerve will not getting treatment soon cause permanent damage to the myelin sheath around the nerve??? I don’t wanna wait too long if this is possible…scared! Any input??
Going through EXACT same thing right now. Tegretol is making life tolerable, but I know I need to take care of the cause and no MD will say that ES is the cause. Funny that we all have ES and all have the same symptoms, but ES just CANT be the cause! Then tell me what IS. I want to fix it!!! I also have Ernest syndrome. Do you have any of those symtoms?
I’m unfamiliar with ernest syndrome…I’m not actually diagnosed with Eagles Either, just that my stylohoid process is elongated and calcified…but my neck on right side always hurts,…I have severe ear pain facial pain vertigo and some kind of dizzy spells that cause me to see flashing lights twitch and almost fall out!!! Just sick of being sick been 3 yrs now:(
I've been prescribed amitryptiline, for the pain I was getting, which was constant, but along the nerves where you'd get both TN and GPN pain, and it has helped a lot- I wasn't able to sleep before, but now can sleep fairly well. As for your question about damage- that is my worry too, as it stands to reason that if these nerves are hurting, then something must be pressing on them or rubbing against them- ie the elongated styloid! And whilst things are bearable now with pain relief, if the nerve is still being damaged, then presumably there will come a point where the painkillers don't work any more, and the nerve could well be permanently damaged!
I'm waiting to see a consultant, no appt. date as yet, but that's what I'll be asking him! I have read on here of one person who wasn't helped by surgery, which was put down to permanent nerve damage from the styloid before the op.
Are you seeing anyone soon to ask this? Have you been told you have to wait for an op?
Actually I have a Nuerologist I see at the University of Michigan for Facial Pain! I only Come across this whole Eagles thing while thumbing thru med records and applying for Disability! A Zmaxillofacial Specialist noted the findings on a Panarama of my Jaw…after reading up on it I feel I fit the description rather well and nothing else has showed any reason for my pain! I will be asking why this was never told to me at my next appt in January! Hoping for some kind of answers! I’m on slot of meds also tegretol Effexor baclofen Antivert Ativan Norco annaprox and vitamin complexes!
Hope you get some answers then! Let us know how you get on, and will you ask about possible nerve damage if you leave it?
Yes I will! How did you get your diagnosis of ES?
I was referred to a dental clinic because I had a swollen salivary gland, and pain in my jaw- stones were suspected, but all tests were clear, and I was still in pain. The registrar did a panoramic x-ray, and noticed elongated styloids both sides. I mostly get pain on the left. I now realise the pain I've had for about 3 years is from the glosso-pharangeal nerve, caused by the styloid. The consultant I don't think believes in ES- he kept calling it 'this so-called Eagle Syndrome', and told me the pain I was getting wouldn't be caused by ES! He also was very surprised when I asked if he could prescribe some pain killers -'why do you want those'?!!!, and said he wouldn't be prepared to operate. He (and I!) was very relieved when I told him I'd found a specialist that he could refer me to, (recommended on this site) I think he was glad to see the back of me! My husband came with me for that last appt.- I don't think they were very impressed that he came in, and he was shocked at how unfriendly the staff were.
I'm now waiting for an appt. with a specialist at Addenbrooks (UK), so I hope that I get treated better there!
Best of Luck!
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