I have gone through a 13 year medical saga and have been diagnosed with myriad of issues along the way - cervical disk issues, chronic migraine, occipital neuralgia, etc. But, nothing has changed my pain. I live in a 9 or 10 on the pain/misery scale and regularly have attacks where my pain and symptoms spike for days at a time. The attacks can be triggered by things like physical activity, massage/PT, yard work, neck movement and I can even wake up in an attack.
All of my symptoms are chronic and on my left side. I have intense headaches/head pressure, tinnitus, ear issues and hearing loss, jaw pain, acute and crippling neck/head pain, lack of neck mobility, feeling like something is in my throat, choking, blurry vision, extreme shoulder/trap tightness and some high blood pressure and irregular heart activity.
A recent 3D CT showed indications of Eagle Syndrome as there is bilateral ossification of the distal stylohyoid ligaments, more prominent on the left than on the right. I suffered a neck injury in 2012 and got steadily worse after.
I have begun my search for the best possible Eagle Syndrome doctor. I live in the DC area.
I am eager to find out after all of these years what is wrong, even if it is going to be a long road.
Do these symptoms and my scan seem consistent with Eagle?
Is there a doctor on the East Coast that is considered the best?
I have reached out to Dr. Annino and Dr. Cognetti but am waiting for them to read my CT.
Welcome to our forum @ccd. I’m very sorry for how long you’ve suffered. A number of us here ended up w/ ES after being a car accident w/ a neck injury so that could definitely have contributed to your potential ES diagnosis. Your symptoms & what’s visible in your scan are consistent w/ an Eagle’s diagnosis.
Your symptoms sound like those we see when the internal jugular vein is being squashed between the styloid process & the transverse process of the C1 vertebra (can be bilateral). That situation causes vascular outflow obstruction i.e. the carotid arteries take oxygenated blood into your brain & the deoxygenated blood flows out through the jugulars. When one or both IJVs is/are pinched so the blood can’t flow out of the brain at the rate it’s going in, intracranial hypertension (IH) is the result, & intense headaches/head pressure, tinnitus, ear issues and hearing loss, acute and crippling neck/head pain, & blurry vision are among the symptoms that can cause.
Your other symptoms are likely more nerve related i.e. the jaw pain likely comes from the trigeminal or facial nerve, feeling of something in your throat from the glossopharyngeal &/or vagus nerve, shoulder/trap tightness & neck pain from your spinal accessory nerve, & high bp & irregular heart beat from your vagus nerve. These are among the cranial nerves that can be irritated by elongated styloids/calcified stylohyoid ligaments.
The best doctors for you to see w/ your vascular symptoms would be either Dr. Cognetti or Dr. Costantino who both will do a styloidectomy & IJV decompression. Both Dr. Cognetti & Dr. Costantino have neurosurgeons who work alongside them during their IJV decompression surgeries in case C1 needs to be shaved back a bit to allow for the IJV to open fully. Dr. Annino doesn’t treat the vascular form of ES as far as we know.
My head/neck injury was in November of 2012, 13 years club. Have you been diagnosed with any hyper mobility diseases like Ehlers-Danlos Syndrome? It’s can be easy to check for it yourself if you know the physical signs.
Thank you very much for such a thorough answer. I do think my case has a vascular component as my head pressure is unreal and constant. I have sent my report and CT to Cognetti and waiting to hear back. I will also reach out to Constantino now. Is there anyone else that is great that might be able to get me in soon? There really is no way to explain how miserable I am. No one can live like this.
Hi & welcome!
I second what @Isaiah_40_31 has said about the possible reasons for you pain… there are nerve pain medications which can sometimes help, like amitriptyline, Gabapentin, Carbamazepine, have you tried any of those? they can take a few weeks to build up in your system enough to help, and some members have had side effects, but they can work well for others… We have had some members too who’ve tried lidocaine patches on their neck, & some doctors will do a lidocaine/ steroid injection into the styloid area , but that doesn’t always help.
I’m not sure which doctors would see you quickest, I think Dr Costantino or if you can travel, Dr Nakaji in AZ. Dr Hepworth has a long wait, & I think that Dr Cognetti does have a bit of a wait from what some members have said recently too… Some of the VES doctors like extra scans and testing done, so be prepared for that.
Hope you can see someone soon, it’s a long time to have been in pain
I have tried pretty much all of these meds and not only do I not get much relief, I get all of the side effects. The only thing that have ever helped me is prednisone or a medrol dose pack but that only makes the misery & pain a bit more tolerable and less volatile.
That’s rough…ice might help, or heat, if you’ve not tried them, muscle relaxants like Baclofen can sometimes help too…anticoagulant meds have been prescribed like Brilinta which can help with head pressure.
@ccd - I second what @Jules said about other doctors you can see. Dr. Nakaji doesn’t seem to have as long a wait as some of the other doctors you’ve mentioned. Here’s his contact info:
