So if I just live with this for the rest of my life does actually Styloid Process Grow? I went to see a couple more ENT and they say I don't have Eagles of course but my CT scan suggested otherwise...oh well...I never had my tonsils removed or anything like that. So does that mean I have the Cartoid Eagle Syndrome one??
Kelx, I've looked into this and done some research, but even doctors can't agree!
Also the classification of the Classic ES and Carotid Artery Syndrome is pretty misunderstood too, and there's a few theories out there as to why ES happens. It can be due to tonsils out, or a trauma to the neck/ throat, which can cause scar tissue and inflammation, leading to changes in the tissues and calcification. It can also be down to a fracture of the styloid process, which causes the same sort of changes. It can also be due to an 'abnormality'- just the way you are, like some people are taller or shorter, or it could be changes in the soft tissues as you get older altering the position of the styloid process. (There's research which shows that the thickness and angle of the styloid process is as big a factor in ES as the length of the SP). So because you've not had a tonsillectomy doesn't mean that you have carotid artery syndrome- that's when the styloids/ calcified ligaments compress/ aggravate the carotid arteries and cause pain along the vessels. Some doctors call it vascular ES- when any of the blood vessels in the neck are affected.
There's varying reports as to whether the styloid processes keep growing or ligaments keep calcifying- I've put this in the ES Information section:
Research suggests it could be the case and also that calcification of the stylohyoid ligament also continues; in a report ‘Biometry and Statistical Analysis Of The Styloid Process by DePaz, Reuda, Barbosa, Garcia and Pastor in 2012, the authors quote the following studies showing this: Monsour and Young (1986) found a steady increase up to age 30, then a slowing down, and then accelerates after 60 years; Carroll (1984) that calcification increased up to 30 years, showed a gradual rise from 30-70 years, after which there was complete calcification; and Sokler and Sander (2001) showed the longest styloid processes were in older age groups.
I also found reference to a study by Sokler in 1999 which showed 3.7% incidence of elongated styloid processes in people up to 20 years old, 37% in 20-40 year olds, and 59.3% in people over 40 years. But Bernfield (1982) believed that at 5-8 years ossification is complete.
Some members of this forum have found that their styloid process has regrown following surgery, and that they have had symptoms again, but this seems to be rare, and I’m not sure whether these were in cases where only part of the styloid was removed as opposed to a complete removal. I have found one reference to this in research- on Wikipedia ‘Regrown of the stylohyoid process and relapse are a common occurrence’- from the book Scully’s Medical Problems in Dentistry.
Thank you! I only have pain in that area if I press on it and yes I can feel that bone under the jaw sticking out (right side) My doctor said that it was an incidental finding on the ct scan, the right side greater than left. Because I’m complaining about the pain around my thyroid cartilage not where the process is. I can live with it because it doesn’t cause pain the only pain I’m getting is behind my thyroid cartilage. So I was just concerned if I left that bone there and dont get surgery if it would grow and cause vascular problems.
If it's not causing problems, then you could wait and see... did your doc have any idea what the pain could be in the thyroid area? I did find several references when researching about tendinitis so wonder if that sometimes causes pain in that sort of area.
Ugh think I spoke too soon… It’s sore today… Geez! 3 ENT’s later still no one believes me… Got another ENT November 1 . Different one this time. Hopefully he believes me
Can one get a tingly numb sensation in face? I do
Yes; it could be the Trigeminal nerve getting a bit irritated, that supplies most regions of the face, and the styloids are quite close to the lower branch. I was getting it on my lower jaw and cheek, seems to have improved post-surgery thankfully.
Heya Kelx-
I'm new to the ins and outs of this syndrome, but what I Do know is that while your skull is unlikely to change much in adult hood, outside of extreme circumstances and degeneration, the ligaments and muscles can calcify due to trauma.
It's from my limited understanding that this is One of possibly many contributing factors in the regrowth and symptom relapse of post surgical Eagle's patients.
Soft tissue calcification is typically no big deal, and while not a super common finding, generally doesn't point to any pathology. It's simply one direction the body's inflammatory response to injury can take.
As I've be learning, especially from people on this board and in bits and pieces from my own Dr's, ES is really really really unusual. Understanding it as a problem depends on symptoms presented, training of the Dr, and familiarity with the syndrome. Like the study Jules cited suggests, elongated styloids don't always mean Eagles, and most ENT's are accustomed to seeing variations in this anatomy with no symptomatic correlation.
I read back on some of your posts to try and get an idea of your symptoms. I'm in the same boat of untangling what is what is what. In my experience of trying to track down "WHAT IS HAPPENING TO MY BODY OMGWTF!!" when you hear hoof beats, think Horses before looking for Zebras.
Have you have you neck and cervical spine checked for issues?
Has your posture or head position changed before the start of symptoms?
You said this started after you gave birth to your son, could the changes in your body balance, or carrying him have thrown you out of whack? (Carrying a human being causing kyphosis or lordosis that has carried on after the birth)
It may sound crazy, but how are the arches on your feet? Do you have lower back pain?
Have you started anything that has changed your daily posture? Ie- more computer time on light duty with your new son.
How does the Rest of your neck, shoulders, upper back feel?
And possibly a big one- Do you grind or clench your teeth while you sleep? Have you had new dental work before the onset of symptoms?
When I started my arm/neck spike battle, the Only medical professional who took me seriously was my friggin Dentist of all people. He became a Neuromuscular Dentist after he began to have crippling headaches and hand pain from being hunched over patient's mouths for hours a day. Things like TMJ, misaligned teeth, learned jaw positions etc can wreck havoc on the head and neck causing host of extreme symptoms.
He knew he couldn't fix my arm (which he said was gross and to stop showing him), but he had specialized types of electro stimulators, and even a frequency generator he hooked to my ear lobes, which did Amazing things for calming down my neck symptoms. Attached is a photo of me in a jaw mapping device trying to track that jazz Down!!
The point is.. ES is a possibility you shouldn't give up on pursuing. But Dr's are not infallible or encyclopedias of knowledge, and rarely study ahead of time for the test that is a patient with something atypical. Pursue multiple attack point to track down your issue if you can.
Come at it from all sides!
Yes I do clench and grind my teeth at night. I should be wearing my splint. My back doesn’t hurt or anything else in that matter. I did have scoliosis as a child as well. But the pain is only one sided and I do feel the Styloid bone under my jaw which is sore. The other side I can’t feel it hence no pain. I dunno. I’ve seen literally over 10 doctors this past year and no avail. I can’t possibly afford going out of my province too find a specialist in eagles. I just pray this doesn’t lead to other life threatening issues
It is very, very rare for anything like that to happen, Kelx.
True, but it is also very very rare to have this condition… Lol… 
Jules said:
It is very, very rare for anything like that to happen, Kelx.
Jules.... Would they have seen if the styloid ligament or process in the CT scan be interfering with the major vessels???
An ordinary Ct probably wouldn't show up any compression of blood vessels, you'd need a CT with contrast/ CT Venogram for that- they inject dye into your veins and do the CT with that, and it'll show up any abnormalities well. Sorry, I can't remember- di you have that done? The symptoms are different with vascular ES- if you look in the ES Info section from the top menu bar, there's a section in there about ES symptoms and the symptoms for vascular ES if you're worried.
Yes I had a ct scan with contrast. I should have stated that. I don’t know if I mentioned but I’m starting to get this numb tingly sensation in my nose area as well. Ok I’ll check it out
Do you know the approximate cost of this surgury?
That may well be the Trigeminal nerve too- it covers most of the face, there's a branch to the nose. I did read that it was the lower branch of the TN which can be compressed in ES, but I have problems all 3 branches! No real improvement since surgery, so has the ES caused irritation which has sensitised all of the nerve, or is it down to something else!! Another circle to go round...!
I know how you feel!!! Frustrated!!! I can’t even express how emotional I am from this. I feel like I’ll die before this is fixed!! You had surgury and it didn’t help? Maybe the near by vessels, nerves where damaged? You think with the boney structure out it would be better? How much did it cost you in total?
I had vascular ES- the vascular symptoms have eased and I do feel tons better- no dizziness, ear pressure, thumping head... I've only had one side done so far, so won't have the complete cure from vascular symptoms until side 2 is done! But I have nerve pain and aching/ tenderness on one side of my throat still. So overall the surgery was definitely worth doing! Knowing that the offending styloid is out is good too, as at least I've done all I can do to help my neck! Like I said, maybe the nerve pain I've always thought was due to ES is down to something else...! I'm in the UK, so treatment is free on the NHS as long as you're prepared to wait! I'm not sure how it will be with the second side though, as there's a bit of a funding crisis...
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I believe I have vascular as well. I have the pain along where the cartoid artery would be. Severe pain!!! I’m not dizzy, pain in the base of left skull, no foreign body sensation in throat, tons of ear pain. It would be free too where in from but no one is near educated enough too know what too do so I would probably have to fly somewhere.
I wonder if you can't get treatment in your province, will your provincial coverage pay to send you to another province to be treated? That would be something worth looking into. I was working in healthcare with cancer patients before I had to take a sick leave due to Eagles Syndrome and I remember that sometimes we would get out of province patients because they can't get the treatment where they live. Their province was paying for their treatment out-of-province, but they had to get approval first before the treatments were covered.
I was initially diagnosed by a dental surgeon....she did a panoramic x-ray and found that I have calcified stylohyoid ligaments on both sides, but the left side is much longer than the right side. She told me that could be the cause of my neck pain and told me it was called Eagle Syndrome. That's how my journey with finding treatment began in May.
If you do end up having to fly to Toronto, there are hotels near Mount Sinai Hospital where Dr. Witterick works out of that will give a discount to you if you have a medical appointment at a surrounding hospital. Google "hotels by Mount Sinai Hospital in Toronto" and that should give you a list of them...that's how I found it.
I wonder if these costs would be something that you could claim as a medical expense on your income taxes?
Kelx said:
I believe I have vascular as well. I have the pain along where the cartoid artery would be. Severe pain!!!! I'm not dizzy, pain in the base of left skull, no foreign body sensation in throat, tons of ear pain. It would be free too where in from but no one is near educated enough too know what too do so I would probably have to fly somewhere.