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? Any help would be appreciated. Thank you so much!
Hi Chasingophelia,
I applaud your dentist for recognizing your symptoms weren’t typical TMJ symptoms & pursuing another diagnosis. It seems quite a number of our forum members are diagnosed by their dentists. It’s unfortunate that dentists aren’t also trained to do ES surgery! An oral surgeon is not the correct type of doctor to do ES surgery. You’ll need to see a skull based ENT or Maxillofacial surgeon to take care of ES. We recommend external surgery over the intraoral approach as this gives the best access to the styloids & stylohyoid ligaments, healing time is a bit quicker, infection rate is lower, also nerves & other soft tissues can be visualized & monitored during surgery. We recommend finding a surgeon who will remove your styloids back to the skull base, & since you also have calcified stylohyoid ligaments, those need to be completely removed to the hyoid bone. It sits under your jaw where your neck & jaw meet.
To get a proper diagnosis, you’ll need to have a CT scan. Your PCP can order this for you, or you can see an ENT & request a CT for confirmation of ES. Our Doctor’s List has the names of many good ES doctors. I would highly recommend Dr. DeLacure (NYC) as he’s somewhat near your area. He’s done surgery for several of our members & is well-regarded by them.
As far as your styloid length goes, 5.8 cm is very long. The average styloid length is 2.54 cm (about an inch), however, I’m not sure the styloids can be accurately measured from a panoramic x-ray thus the need for a CT scan.
The symptoms you’ve listed are often seen w/ ES. Ear pain, cheek pain & pain above the eyebrow can be caused by irritation to the trigeminal nerve. Hoarseness is caused by an irritated vagus nerve. Neck pain especially if it radiates into your shoulder(s) is often from the accessory nerve. Dizziness can be caused by vascular compression. Elongated styloids can compress either the internal carotid artery or the internal jugular vein which restricts blood flow to or from the brain depending on which one is compressed. A CT scan w/ contrast can help determine if you have vascular compression, but you’ll need to have it done w your head in the position that causes the dizziness to get worse. Often when the head is in neutral position, vascular compression can’t be detected.
Your question about being prone to calcium deposits is a good one. It sounds like your body does mismanage calcium. We have several members who’ve been diagnosed w/ parathyroid disease which can cause higher than normal calcium levels in the body. That might be a place to start if you’re looking for an explanation as to why you’re having these various calcified ligaments, etc. You’ll need to see an Endocrinologist for that.
Here are links for several Two Minute Neuroscience videos on YouTube which will help explain some of your symptoms. They are quick to watch & easy to understand.
Trigeminal nerve - https://www.youtube.com/watch?v=FhbQBrX3Kq0&t=6s
Vegus nerve - https://www.youtube.com/watch?v=a-NCs1lOU5w&t=7s
Accessory nerve - https://www.youtube.com/watch?v=e4IgAGuP_Hk
`> Thank you so much for all that info! It’s been such a hard year. We had a very tramatic family event in our lifes one year ago and I thought that this was all stress from it. It is 2:30 in the morning now and I can’t sleep. I worry way too much. Thank you for the doctor recommendation. I was also looking at Dr. Cognetti from Pennsylvania he is not too far from me. I think I had the measurements wrong because of what the dentist told me! He sent me the xray but I don’t understand it. It shows a calcified section of the styloid I believe and it teafs 50 mm on the right side and 45.4 mm on the other? I had an mri for my head pains a few months ago but nothing was mentioned there. Would that show anything? Please forgive my all my questions! I’m assuming we dont need our styloid bone and ligament? I had a ct of the head a few years ago (concussion) and worry about more radiation from another? Thanks again for your reply and this helpful forum!! I will try to attach the photo!
Just wanted to add that I feel everything on my right side. I also get nosebleeds on that side. I have one right now. What can that mean?
Hi, & welcome to the forum!
MRIs show more soft tissue, so aren’t great for diagnosing ES, the styloids don’t show up very well on that. I wouldn’t worry too much about the measurements, it’s enough that they’re elongated, the measuring isn’t always accurate anyway as the CT images are slices through the body; we have had lots of members who’ve found their styloids are much longer when they’ve been removed in surgery. The styloid process can be elongated &/or the stylohyoid ligament can be calcified, sometimes these can be measured together or separately, it doesn’t really matter as long as they’re all removed! And we can manage without them, I don’t notice any difference after surgery with swallowing etc.
I wouldn’t worry too much about the radiation, it should be okay if your last CT was a few years ago.
Dr Cognetti has done many successful surgeries too, but doesn’t schedule in appts & surgeries as often as other doctors, so will be a longer wait. If you do see him, I’d check how much of the styloid he’d remove, & if he’d remove all the calcified ligaments too as we’ve heard differing things about how much he can take out, & for best results you need as much out as possible.
Hi Chasingophenia, your story sounds very familiar and your symptoms are pretty common with many people that have elongated/calcified styloids. I was very scared at first when my dentist made a similar discovery. I had an MRI at one point due to similar symptoms as well where “nothing” was found. The CT scan (typically without contrast) is definitely the gold standard that most ENTs use to determine styloid length, etc. I would try not to lose sleep over this, although I’ll admit I’ve stayed up late too many nights reading about it 
.
You’re on the right path in seeking an ENT like Dr. Cognetti that has experience with ES. An experienced surgeon will be able to guide you and give you options on the best path forward. It might be worth getting a copy of your old CT scan, but generally the technician needs to be aware that they are looking for calcified styloids in order for them to show up well in the imaging (as far as I know). I’m glad you may finally be on the right path when it comes finding the source of your head/neck pain and other symptoms!
Hi Chasingophelia,
Each of us has gone through emotionally what you are when diagnosed w/ ES. It is scary & disconcerting! You’re doing the right thing by asking questions & getting information here. We’re here for you to support, inform & encourage you.
I wouldn’t worry about radiation from the CT scan. I had a head injury between my ES surgeries & had extensive CT scans done at that time not long after I’d had the diagnostic CT for my ES. Our bodies are able to handle intermittent radiation & recover from it. It’s long term exposure that poses a problem.
Your styloids are not only long but have a funny curve in them which could be causing extra pain for you. Getting them removed at the skull base & getting the s-h ligaments fully removed as well would be really smart. Dr. Cognetti errs on the side of caution & leaves an inch of styloid behind when he does ES surgery, & as Jules said, we’ve gotten inconsistent reports about his willingness to remove the s-h ligaments. We’ve had some patients w/ great outcomes when a bit of styloid is left behind, but we also have a number of members who’ve had to go back for revision surgery from another surgeon.
Dr. DeLacure (NYC) is also close to you & very experienced w/ ES surgery. He removes the styloids back to the skull base when possible. Another doctor you might consider is Dr. Annino in MA. Both of these doctors have done successful ES surgeries on several of our forum members.
I don’t know if your nosebleeds are related to ES. If they are, you’re the first member I know of to have that as a symptom. An ENT doctor can scope your nose to see what’s going on. Frequent nosebleeds can come from a capillary that’s close to the surface inside the nose & “leaks” when the internal nostrils get too dry or it’s irritated from nose blowing. It can easily be repaired by cauterization which stops the nosebleeds permanently. My niece had this done when she was a child. It was quite successful.
Thank you so much Isaiah! This group is so supportive! I really appreciate you understanding. It’s funny because I was just starting to think it was all in my head so I was ignoring my symptoms and they almost started to get better then when I found out that I had ES they got worse because I started to worry! I guess that’s how the mind works. I made an appt. with Dr DeLacure on Oct 28. So we need our styloids and s ligaments? What is their purpose? And I’m sorry to hear about your head injury between your surgeries! I hope you are doing well now! Thanks again!
The styloid processes serve as an anchor for ligaments, which attach to muscles on the floor of the mouth. I don’t know why, but they don’t seem to make any difference once they’re gone!
I keep seeing that people are saying external surgery is better less risk of infection. Look into the Davinci Robot there are medical journals stating it is less invasive, less risk of infection etc. They have great vision with the robot and are able to get to the skull base. However not everyone is a candidate. Please read on all your options. You are getting a lot of good advice but I believe you should read about all options and decide what is best for you with your doctor.
I had it done with the Davinci Robot and had a great outcome. One major problem is that not a lot of doctors are trained or have access to the Davinci Robot. It takes a whole team.
I am posting one article for your review. They absolutely can watch the nerves and vessels magnified with the robot.
www.dignityhealth.org /…/services/ davinci -surgery
Robot-assisted surgery is an even less invasive surgical alternative available for more complex conditions. In most cases, this minimally invasive surgery results in decreased pain, less need for narcotics and a lower risk of infection. The da Vinci Surgical System ® is a sophisticated robotic platform designed to expand your surgeon’s capabilities and offer a minimally invasive option for major surgery.
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www.dignityhealth.org/.../services/davinci-surgery
Robot-assisted surgery is an even less invasive surgical alternative available for more complex conditions. In most cases, this minimally invasive surgery results in decreased pain, less need for narcotics and a lower risk of infection. The da Vinci Surgical System ® is a sophisticated robotic platform designed to expand your surgeon’s capabilities and offer a minimally invasive option for major surgery.
Thank you for this perspective & the links, adriene61. It’s good for our members to know all their options.
Thank you for all the work you do! I know it takes a tremendous amount of time. Have you ever thought about getting a group together to raise money to give to the study of ES? I have raised a fair amount of money in the past for different causes but no where near the amount that would be needed.
One of our members started a GoFundMe page for ES patients who may not be able to afford surgery & after a year, she closed it as no one took interest in it. I think her goal was to raise $10K. There have been others who have voiced interest in fundraising to support research for ES, but I don’t think anyone has officially set up an organization for that purpose.
Not to be discouraging, but it has been suggested that ES is just too obscure, & too few people are diagnosed w/ it, for the scientific community to take notice. I suspect it will take some doctor of note being diagnosed him/herself before ES research will be recognized as a worthwhile project.
As for me, my husband just retired, & I’m looking forward to spending some quality time with him going forward so am trying to extricate myself from some of my current overcommitment. I would definitely support ES research should a project get underway.
Chasingophelia,
So glad you found this group. I am chiming in to say that your symptoms sound very familiar, and the imaging is impressive! How wonderful that you are now on the path to the most appropriate treatment.