Hello. After a year in extreme pain i have been through two Mri, one ct one 3d ct and ultra sound. The styloids are 3.6 cm on both sides. The doctor in Trondheim ( i waited months for his examinations) and after one minute he just said it cant be ES. So he referred me to another doctor.
My symptoms are pain on the left side. Thro
at, left eye , left side on the tin. Feels like fever and fatigue. Symptoms are getting much worse when i eat food or drinking hot coffee. I get ofteb lightning pain from my cheek to the ear. Its like someone is pressing a needle on my nerves. How can this not be ES? Kindly regard a frustrating Norwegian manš
Poor you, itās rotten having to wait so long & then only to be dismissed, did your doctor say why he felt you didnāt have ES?..the definition of ES is elongated styloid processes &/or calcified stylohyoid ligaments which cause symptoms. So as your styloids are longer than average & you have symptoms it should be straight forward to diagnose ES. Your main symptoms sound like it could well be Trigeminal Nerve pain; there are other causes for that, not just ES. Did your doctor mention prescribing any nerve pain medications for this? There are some which could help like Gabapentin, Lyrica, Amitriptyline, Carbamazepine, so might be worth trying, not sure of your healthcare system, whether you have a GP/ PCP who could prescribe them? Benās Friends also have a Facial pain group which you could either join or just have a look at for more info, hereās a link:
Living With Facial Pain - Support Community for Facial Pain Diseases - Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN)
It might be worth investigating TN a bit more, depending on what other ES symptoms you have- hereās a link to the Common Symptoms discussion if youāve not seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
If you donāt have any other ES symptoms then maybe a referral to a Neurologist might be an idea to look into this further, although presumably nothing showed on your MRI?
If you do have other ES symptoms then it might be an idea to see if you could be referred to someone else- although we only know of 2 doctors with ES experience in Norway & Iām guessing youāve seen one of those? There is a section about patient advocacy on here, there might be some helpful info about how you can push for another appointment. Is there any way you can get a second opinion?
So frustrating for you, I hope that you can get some treatment!
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Jules has given you a very thorough response, @Stigreel. We have a tab called āResearch Papersā under the General category on our homepage. You should be able to find some research papers where your symptoms (Trigeminal Neuralgia in particular) are mentioned as ES symptoms. These may be able to help you support your case for ES. It does seem that w/ elongated styloids & TN, you most likely have ES, but as Jules noted, TN can have other causes. Itās just suspicious to me that you have the long styloids & TN together.
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