Hey everybody!
After an 18 months journey of pain i have been diagnosed with eagle syndrome last week. I have appointments with different neurosurgants to see how to proceed. My left styloid is over 5 cm and my right is over 4 cm with ligaments ossified on both sides. My main symptoms are pain in throat, earache, strange clicking on right side when swallowing and occasional pain when turning neck (there are more symptoms but these are the most bothering). I dont wanna get too much into how hellish this condition is, i have read a lot of storys on here similar to mine so its good to connect to people that actually understand what im talking about.
Now to my point: ive been thinking a lot about why the pain started with 30 years and not earlier when my styloids where elongated before allready. I have the suspicion that something changed the angle of them or maybe they are fractured. I exactly remember the day it started and that was the next morning after i had a very intense laughattack that ultimately made me feel like something just happened behind my throat. Im not sure about it but i suspect that was how it all started. I will ask about it on my next appointment. What are your thesis of what caused the onset of symptoms?
If you have time to trawl through the ES Info section in the newbies category, thereās a section in there about causes. Other than the original Watt Eagleās discovery of a connection with tonsillectomies, the only causes are theories. But there are quite a few activities which can fracture the styloid process, which can lead to inflammation and an āover healingā response by the body which can lead to calcification. The things which could cause a fracture are pharyngeal trauma, laughing, yawning, epileptic fitsā¦ so this could explain whatās happened to you. Several of us have had histories of RTAās and whiplash injuries, or people have had neck/ head injuries, so that fits. There also seems to be an ageing factor too; itās thought that as the connective tissue loses elasticity with age it can slightly alter the position of structures inside the neck, which could bring the styloid process into contact with different nerves or blood vessels etc. There is also a possible cause of metabolic disorders, like too much calcium which can cause the styloid process to grow longer and/ or calcification. The tendency to have elongated styloid processes can be a family trait too I think.
A lot of doctors are ignorant about this (as youāve obviously found out), and donāt believe the condition, let alone care about the cause!
Hey Jules! Thanks for your response. I think the family-factor is underrated. I found out that my aunt who is internist herself actualy has elongated styloids too and was diagnosed with eagle syndrome. She has different symptoms though and doesnt want to have the surgery as she is 72 years old and not suffering too bad but she taught me about the possible connection and urged me to insist on a CT scan.
Itās good that she pointed you in the right direction, and Iām glad that she isnāt in too much pain. I have an identical twin, and if she ever needs a CT or panoramic x-ray Iād be interested to see if she has elongated styloid processes too! She has had ear and jaw problems, but not the neck problems or vascular symptoms.
Got an email from the surgeon yesterday. I had an appointment with him for Juli but he wants to see me today so i will drive to Hamburg now. Dont know If this is good or bad any suggestions of what to ask him specifically? All i know so far is that both sides are elongated with calcified ligaments. Havent had a 3 d scan with contrast, only normal CT so i dont know If its vascular or classic. Will see what he says. Im a little excitedā¦
Good luck Benyon! You could ask him if heās done the surgery before and if so, how many times. Also if he does external or intra-oral surgeries. And if he believes in taking out as much of the styloid/ligaments as possible. If he hasnāt had experience with Eagles surgeries, you could ask if he has experience doing surgery in that area of the neck.
Just got back. Finally i talked to someone that knows about eagle and has experience with it. He told me that its very rare and they need to do more diagnosis but he said that most likely we have found out where the pain is coming from. He will have a interdisciplinary meeting with neurosurgants, ent-specialists and jaw-specialists (dont know the english term for them) about my case and then decide how to proceed. They have done the surgery few times before extraoraly and intraoraly depending on the angle and length i guess but he seemed to prefer extraorally.
I looked through the scans with him and found out that my right side isnt only enlongated but also fractured. It all makes so much sense now as this is the side that hurts much more allthough the left side is longer. I told him about my laughattack and he said that it could well be the cause for the fracture and breakout of symptoms.
Im totaly stoked right now. I dont know If i should laugh or cry. I was in psychiatry for 6 weeks last year because of this and am taking antidepressants since then. Everybody pushed me on the psychotrack and i always knew that i dont belong there.
Oh Benson! This is such great news! Iām so sorry for what youāvery been through. Iām so jealous that you have so many experts of different disciplines working together to help you! When you explain your scans it sounds identical to mine (Iām waiting for my surgeries ). Your English is excellent! Much better than my Deutsch.
Thank you musicgeek im a musicgeek myself. Used to do the vocals in a rock/metal-band. Had to quit this thanks to the styloids singing/talking loudly or long is a no go as it immediately worsens the pain. Im sorry you have to wait for so long. All this waiting is so exhausting.
We didnt talk so much about surgery today, its too early for that i suppose. First i will have to do a lot of checking and i guess they will wanna try treatment with injections or carbametazin and that sort of stuff first. He definately mentioned surgery as an option for me though.
Im in good moods though, at least its something to work with and not: āDo you have a lot of stress Mr Benson?āā¦have had enough of this.
Hes on vacation for the next week but heāll discus it before and said hes gonna give me a call the week after for further appointments. He seems to take it very serious that gives me a good feeling.
The thing is: i didnt even believe myself anymore. After I got out of psychiatry i was pumped with 3 different antidepressants and benzodiazepemes (ironically no painkillers). Im still visiting a psychiatrist on a monthly base and he keeps telling me its psychosomatic and at one point i started to accept it. Until one period of severe pain, thats when i insisted on a CT. Lesson is: i know my body best. I always described it as something poking into my throat from the backā¦which is exactly what it is.
@Benyon your English is fine! Just wanted to say, at least the culprit as you suspect was as a result of something positive. If you are going to have a crazy body incident it may as well be from a laugh attack!!!
Update: i had my second appointment last week. After another interdisciplinary meeting with ENT, neurosurgeon and mouth-jaw-face-surgeon (dont know the exact english term) they came to the conclusion to have the surgery made by the mouth-jaw-face-surgeon. He looked through my mouth and found the right styloid poking into the back of my throat, it was very easy to palpate. The right one is also the one that is fractured. Due to the fact that its so close to my throat they want to operate intraoral but told me that they might have to open an extraoral aproach too during the surgery in case they cant take the whole thing out. This confuses me a bit. Why not operate extraorally from the beginning then? Well, i am scheduled for surgery on sept 15th and have the right one removed. If all goes well, they want to do the left side short after.
I will go to another clinic before to hear a second opinion but one thing is for sure, i will have the surgery very soon.
Somehow I missed your previous posts. Iām so glad to hear of your diagnosis & pending surgery. I agree w/ everyone else - your English is just fine! I donāt even speak German so youāre light years ahead of me in the bilingual realm!
I donāt think thereās anything wrong with you questioning your doctorās suggestion that he might use both the intra & extraoral approaches for surgery. You might tell him that from what youāve read, the extraoral approach gives the best access for removing the styloid to the skull base, & you would prefer he uses that method as opposed to potentially trying both. For your info, Benyon, several of the top ES doctors in the US require a 6 month healing period between surgeries due to the amount of swelling that occurs in the throat & neck post op. There have been successful bilateral surgeries done (both sides in one operation), but these are few and far between. Based on my experience, putting sufficient space between surgeries to allow complete healing on the first side allows for quicker healing on the second side. The timing for your second surgery should not just be based on your doctorās opinion. You should ask for postponement if you arenāt feeling back to normal at the time your second surgery is expected to take place.
Iām excited for you as well. I know your wife and kids will love having you back to normal!
any suggestions of what to ask him specifically? All i know so far is that both sides are elongated with calcified ligaments. Havent had a 3 d scan with contrast, only normal CT so i dont know If its vascular or classic. Will see what he says. Im a little excitedā¦
im a musicgeek myself. Used to do the vocals in a rock/metal-band. Had to quit this thanks to the styloids