I am copying and pasting what I wrote in another area but this may be a better place to put it!
Hi everyone. I’ve been to so many doctors this last year and no one can figure out what was wrong with me. I went to a dentist a couple weeks ago and said I may have TMJ issues again but they seem different this time and I also suspect something I read about eagles syndrome. He did a panoramic x-ray and sent it out to radiology. He called me and said it came back that I had an enlongated styloid process with the right side being longer at 5.8 cm. Is that really bad? Also said the stylohyoid bones were calcified and referred me to an oral surgeon. Is this the right kind of doctor to see? I made an appointment. Besides the pain in my neck I also get dizzy, ear pain, hoarseness and cheek pain but every single day I have a pain to inches above my eyebrow and it all feels connected. I just feel scared right now. Any one else get dizzy and head pains? I also want to mention that I had two surgeries on both shoulders for calcific tendinitis and I have calcium in my groin area. I wonder if I am just prone to calcium deposits? And lastly, if mine is compressing my vascular system am I in danger? Any help would be appreciated. Thank you so much!
Others who have lived with this longer can correct if I’m wrong, but I think the “right” Dr is one who’s knowledgeable and willing to do what’s best for you as the pt. I saw a vascular surgeon for mine, but the other 2 drs in my area are ENTs. You can search doctors I believe and find a list of both US and non US Drs familiar with ES. I deal w dizziness and ear pain as well as ringing and constant headaches in the front area of my head. The level of danger from vascular compression depends on the person I believe, I would talk to your doctor. As for the rest of your questions I’m not sure how to answer them but know that you’re not alone!
Have replied to your other discussion!
@Chasingophelia I have very similar symptoms to you. I know exactly what you mean when you say you can tell it’s all connected; same. I have throat pain and neck pain and the head pain is like an extension of it almost. My headaches are on my right side behind my right eye, all other pain on the same side. My doctor suspects I have vascular ES. From what my doctors (head/neck surgeon and a neuro interventional radiologist) have said I am not in danger of stroke and can continue on with my life as normal, but I should back off if symptoms worsen (like for me I get dizzy and have pulsing in my head sometimes when exercising.) That being said vascular ES can cause intracranial hypertension which can cause the headaches. It’s increased pressure in your head due to the blood not being able to drain properly through the veins. It can affect the optic nerve and if left untreated can cause vision issues. If you are having vision disturbances it Might be a good idea to see an eye doctor to examine your optic nerve (eye dilation exam.) if I were you I would continue on with the appointment with the oral surgeon and see what they say, but also research some doctors in your area who are on the list on this forum and maybe try to make an appt with one of them. If you are in NJ I believe there are a few within reasonable driving distance to you. It is a pesky diagnosis because many doctors are not trained to recognize or treat it, and it can be so painful, but it is not particularly life threatening. It’s great your dentist recognized it and you’re on a path now to handling it! Good luck and keep us updated.
Thanks Blossom! Your sound similar to me. So I’m assuming you did not have surgery? When I first wrote this I was going to the oral surgeon but then after reading I made an appointment from the list with Dr. DeLacure in New York City for next Wednesday. I’m glad the doctors told you it’s not life-threatening because that is my fear. I try not to worry but I do! I get dizzy also specially if I’m looking down too much or bending down. Do you know how long your styloids are? I am attaching this x-ray from the dentist that was read by the radiologist. Isaiah and Jules already gave me their opinion they are so helpful and kind! But I am wondering now is this measurement of 50mm for the styloid and the stylohyloid ligaments connected? Or just the styloid I wonder? Because 50mm seems very long! Of course I have anxiety and some stomach issues and I am wondering if it’s just nerves or from this? This site has been so helpful! Glad you get some relief from meds!
I have not had surgery yet and have been going through testing rigmarole since March. I’ve had a CT scan without contrast, vascular ultrasound of my neck, eye exam to check for optic nerve inflammation and just recently had a cerebral angiogram to see where exactly the vein is compressed and what my head pressure was. Ultrasound showed compression of my jugular but the angiogram did not, according to the neurointerventional radiologist who did the procedure. Pressure in my head is slightly elevated but that could be because of some narrowing of the veins in my head. I’m still waiting for my next appt with my head and neck surgeon to see what he thinks about the results and what his recommendation is moving forward. Since the blood thinner has helped so much with my pain I tend to lean toward not wanting surgery since I’m not even sure if that is what would fix my problem at this point… But I did have a pretty bad flare up this weekend that required prescription pain pills… so… I guess it is a matter of how well the blood thinner I’m on continues to work and what my doctor thinks. I’ll go see him next on Nov. 5. Looking down and bending over is also worse for me with the dizziness and when I lay on my side I’ve noticed more whooshing/pulsatile tinnitus (heart beating in my head.) so it’s possible the angiogram didn’t show compression of my vein because my head was neutral the whole time.
I actually don’t know what my styloid measurements are but my dr brought it up to me after treating/testing me for what we thought was tonsillitis and then salivary stones. On the ct I had he noticed my right styloid is “quite long” and he thinks the ligaments are stretched over my arteries. It’s totally possible that measurement on your scan could be the styloid and the ligaments combined because they tend to kinda calcify together from my understanding and then it’s hard to see where one starts and the other ends. Glad you got an appointment with a Dr on the list so quickly, lots of people here have seen him so you will be in good hands. Hang in there!!
Thanks! How does one test to see if they have intracranial hypertension?
They’d check symptoms, MRI or CT can be done, & a lumbar puncture to check the pressure of the CerebroSpinal Fluid (CSF) . Occasionally if the pressure’s high the ophthalmic nerve can be damaged, so the eyes are usually checked too.
Here’s an overview:
Mine was checked during a cerebral angiogram where they inserted a catheter into a vein in my wrist and groin and then they injected dye and took xrays. but sometimes it is diagnosed based off of symptoms or other methods (like lumbar puncture). With the angiogram they can see where vein is compressed as well so that is my doctor’s preference.
Hi Chasingophelia,
It’s important if you do get checked for intracranial hypertension, that during testing, your head is in the position that makes your symptoms worse. Some doctors who do these tests always put the patient’s head in a neutral position & then declare there is no vascular compression or intracranial hypertension. Head position is very critical for these types of tests, but just as w/ some of the details of ES diagnosis, too many doctors don’t seem to understand that.
5.8cm is a significant length. Over 2.5cm is considered abnormal or indicative of Eagles. You are very lucky to have dentist pick up on this as many don’t. Oral surgeon definately not what you want.
We have found ENT with a neck and cancer specialty to have knowledge and experience with Eagles. We have a good list of docs and it is SOOOOOO worth it to take a drive to see one, if one is not close to you. I am glad you got an appt with one on the list!!!
Thanks Snapple! I am going to Dr DeLacure in NYC. He is on the list. Will keep everyone posted