My 3D CT images

@heidemt Dr. Berke is actually one of the docs I have seen at UCLA. He ordered my CT scan and because the radiologists ruled out Eagles they sent me on my way. I emailed my scans to Dr. Samji but still waiting for his thoughts. I will research the other docs you named. Thanks for trying to help.

Dr. Berke turned me away too.

@heidemt ...but you were later diagnosed with Eagles?

Adam, I'm going to send you a friend request so I can email you.

When we talk about calcification caused by trauma in the area... how long of a process may that calcification take place? years after trauma? months? I was in an auto accident and my head hit the side window, but that was just a little over a year ago. Now doctor is telling me both of my ligaments are ossified and there are some broken sections. Not understanding how long the calcification process may take, I am not sure if I could rule out it being brought on by that particular trauma or not. I guess it doesn't change anything... but my mind kept wanting to analyze and try to understand why.

I know what you mean, Bella; I think if we can understand why it seems to help with it all somehow... I haven't found anything in the research I've done to say how long it can take though. I get the impression from what I've read, and from a few members who have had ES post-tonsillectomy, that it can come on quite quickly after that, and the mechanism for inflammation and calcification is the same in both those situations, I presume. Quite a few members have had car accidents, so maybe that is the cause. I had quite a violent one back in 1994, and have had neck problems ever since, although the worst of the ES symptoms only came out in the last 3-4 years. I don't know if I can blame mine for it, but that seems to make it easier for people to understand a bit what my neck problem is! If I mention it's called Eagles Syndrome and some bones in my neck are too long, they get really freaked out- visions of wings growing out the side of my neck I think!!

Here’s an article talking about basic ES rundown, also mentions there are apparently 3 types of radiographic presentations of eagles syndrome
"Type III consists of interrupted segments of the mineralized ligament, creating the appearance of multiple pseudoarticulations within the ligament (Langlais et al., 1986)."

http://www.sciencedirect.com/science/article/pii/S1013905210000945

hey guys just wanted to give a quick update, and also thank all of you for sharing so much info and sharing your stories. I sent my scans to Dr. Samji, and he looked at them and said it's not Eagles, there were no other notes or observations. I can go back to UCLA for a 2nd try, but they will base everything on being able to palpate one of those floating pieces from inside the mouth. It could be I don't have Eagles, but just some kind of extreme case of TMJ or tonsil stones or some other issue. Very frustrating.

Sorry that he's not prepared to help either adam. Would any of the doctors be prepared to try steroid/ lidocaine injections into the area for pain relief?

Thanks Jules for the reply! Yes, there's a certain comfort in being able to understand what may have caused it (I guess logically that makes one more confident in discerning symptoms and deciding course of actions).


Jules said:

I know what you mean, Bella; I think if we can understand why it seems to help with it all somehow... I haven't found anything in the research I've done to say how long it can take though. I get the impression from what I've read, and from a few members who have had ES post-tonsillectomy, that it can come on quite quickly after that, and the mechanism for inflammation and calcification is the same in both those situations, I presume. Quite a few members have had car accidents, so maybe that is the cause. I had quite a violent one back in 1994, and have had neck problems ever since, although the worst of the ES symptoms only came out in the last 3-4 years. I don't know if I can blame mine for it, but that seems to make it easier for people to understand a bit what my neck problem is! If I mention it's called Eagles Syndrome and some bones in my neck are too long, they get really freaked out- visions of wings growing out the side of my neck I think!!

Hi Adam,

Have you found out more since then? I seem to have both TMJ issue and Eagles... and as I have read and been told, symptoms can overlap. Have you tried a consult with TMJ specialist? (the imaging you had done, doesn't it also show TMJ area?)

I am wondering how much (if any) did Dr. Samji charge to look at the scans? I am thinking maybe I should send mine to him to have an expert opinion on this. So far I've only discussed the ossified stylohoid ligaments with my TMJ specialists and my Upper Cervical Chiropractor, none of them know Eagles that well.

adam83 said:

hey guys just wanted to give a quick update, and also thank all of you for sharing so much info and sharing your stories. I sent my scans to Dr. Samji, and he looked at them and said it's not Eagles, there were no other notes or observations. I can go back to UCLA for a 2nd try, but they will base everything on being able to palpate one of those floating pieces from inside the mouth. It could be I don't have Eagles, but just some kind of extreme case of TMJ or tonsil stones or some other issue. Very frustrating.

Bella, I think it would be a good idea to send you scans to a doctor who knows about Eagles and Dr. Samji certainly is one of the most experienced Eagles doctors in the country. You could call his office and talk to his staff. They are pretty familiar with dealing with Eagles patients and what the process is.

Thank you heidmt. It's comforting to know that Dr. Samji is one of the most experienced Eagles doctors in the country. I will give his offie a call to see if he can help.

heidemt said:

Bella, I think it would be a good idea to send you scans to a doctor who knows about Eagles and Dr. Samji certainly is one of the most experienced Eagles doctors in the country. You could call his office and talk to his staff. They are pretty familiar with dealing with Eagles patients and what the process is.

hi bella, I did TMJ therapy + splints for months with no relief from it. Recently I saw the Orofacial pain specialist at UCLA (TMJ dentist guy). He said my problem is mostly muscular tension in the jaw/throat, maybe caused by reflux while I'm asleep or maybe sleep apnea. He said I was smart not to do any 'occlusal' therapy where they change your bite. He said to stop using my splints because I just clench on them. I can go back and get some kind of injection in my TMJ joint in a few months if I don't improve. The injection would fill the joint with cushiony gel of some kind to reduce friction. So currently I'm trying to fight the "silent reflux" that sneaks up my throat at night.

bella said:

Hi Adam,

Have you found out more since then? I seem to have both TMJ issue and Eagles... and as I have read and been told, symptoms can overlap. Have you tried a consult with TMJ specialist? (the imaging you had done, doesn't it also show TMJ area?)

I am wondering how much (if any) did Dr. Samji charge to look at the scans? I am thinking maybe I should send mine to him to have an expert opinion on this. So far I've only discussed the ossified stylohoid ligaments with my TMJ specialists and my Upper Cervical Chiropractor, none of them know Eagles that well.

Adam- urg! How frustrating he wouldn’t take you on!
I hope this new treatment goes somewhere for you.
Have you tried TENS treatment with your tmj stuff? I’m trying to find the name of it again, but my dentist had a special single wave tens unit he stuck on my face and neck to try and relieve some jaw tension/ clenching/ pain. It was pretty weird, an it makes your jaw and neck bounce to distract the muscles. Worked a treat for the pain.

Heya Bella-
I spoke with his staff about sending in mine right before they went on holiday break, and they were kind and patient. It’s worth a shot, or just to call and ask.
They told me that Dr Samji wouldn’t be back until after the start of the year so not to freak out if it takes a while to hear back from them.

He doesn’t charge to review records, but after he does, if he thinks he can help, a coordinator calls back to set up an appointment and help figure out travel details, tests, etc. They said the coordinator could also set up a phone consultation with Dr Samji, but he does charge for those and they’re not covered by insurance.

The woman I spoke to didn’t know the fee, said she was filling in for the normal lady who was on another phone call, but I checked out the practices website and it mentions 0 interest payment plans and insurance options.



Hope this helps and good luck!

Those are very encouraging and helpful info. Thank you! I will give them a call tomorrow. Hopefully he can shed more light on my condition.

I'm planning to start TMJ treatment with a Gneuromuscular dentist. She uses Tensing to relax muscles... I wonder if she would be willing to do that to all over my neck :p not just the jaw...



SnappleofDiscord said:

Adam- urg! How frustrating he wouldn't take you on!
I hope this new treatment goes somewhere for you.
Have you tried TENS treatment with your tmj stuff? I'm trying to find the name of it again, but my dentist had a special single wave tens unit he stuck on my face and neck to try and relieve some jaw tension/ clenching/ pain. It was pretty weird, an it makes your jaw and neck bounce to distract the muscles. Worked a treat for the pain.

Heya Bella-
I spoke with his staff about sending in mine right before they went on holiday break, and they were kind and patient. It's worth a shot, or just to call and ask.
They told me that Dr Samji wouldn't be back until after the start of the year so not to freak out if it takes a while to hear back from them.
He doesn't charge to review records, but after he does, if he thinks he can help, a coordinator calls back to set up an appointment and help figure out travel details, tests, etc. They said the coordinator could also set up a phone consultation with Dr Samji, but he does charge for those and they're not covered by insurance.
The woman I spoke to didn't know the fee, said she was filling in for the normal lady who was on another phone call, but I checked out the practices website and it mentions 0 interest payment plans and insurance options.

Hope this helps and good luck!

Adam - That sounds like a very rough situation you are in... with the reflux adding on top of all other symptoms. Is the TMJ dentist at UCLA the one who can help you with those injections?

I am not sure if most of my problem will resolve with TMJ splint treatment... I was in one such treatment before and that splint eventually caused me more trouble; however, that doctor wasn't such a TMJ and orofacial pain specialist and didn't even take any scans. So I went to Dr. Demerijian in Glendora (he's also in Burbank), who took CBCT of my joints and explained my condition. I feel I would benefit from (and it's probably a necessity) TMJ splint treatment to decompress my joint space, so probably just need to go to a more skillful doctor. I then had a consult with Dr. Goei in S. Pasadena; I feel more confident in her methodologies. Nonetheless, there's the fractured ossified stylohyoid ligament and the fractured hyoid bone involvement for me in all this... so I am not sure how much of my pain symptoms are TMJ and how much is due to those other issues.

I hope you find the doctor and treatment that can help you get better!


adam83 said:

hi bella, I did TMJ therapy + splints for months with no relief from it. Recently I saw the Orofacial pain specialist at UCLA (TMJ dentist guy). He said my problem is mostly muscular tension in the jaw/throat, maybe caused by reflux while I'm asleep or maybe sleep apnea. He said I was smart not to do any 'occlusal' therapy where they change your bite. He said to stop using my splints because I just clench on them. I can go back and get some kind of injection in my TMJ joint in a few months if I don't improve. The injection would fill the joint with cushiony gel of some kind to reduce friction. So currently I'm trying to fight the "silent reflux" that sneaks up my throat at night.

bella said:

Hi Adam,

Have you found out more since then? I seem to have both TMJ issue and Eagles... and as I have read and been told, symptoms can overlap. Have you tried a consult with TMJ specialist? (the imaging you had done, doesn't it also show TMJ area?)

I am wondering how much (if any) did Dr. Samji charge to look at the scans? I am thinking maybe I should send mine to him to have an expert opinion on this. So far I've only discussed the ossified stylohoid ligaments with my TMJ specialists and my Upper Cervical Chiropractor, none of them know Eagles that well.

@Snapple - I have tried TENS many times, plus ultrasound. It never seems to help me much aside from making some things numb temporarily. It barely loosens my face/neck. The latest doc recommended finding some kind of biofeedback device. I am starting to notice I regularly bite my tongue by accident, maybe even in my sleep, and that can cause nerve-style pain to go into your eardrum.

@Bella - Not sure who but yeah someone at UCLA would do the injections I assume. All I can say about TMJ treatment is trust your gut instincts. These dentists try a lot of random tactics based on past patients and often don't personalize it to you. They can really mess up your jaw (and teeth) if they do the wrong thing. Why did you like Dr. Goei better? The thing with Silent Reflux is you aren't aware of it you happening 95% of the time-- you only feel the effects of your throat/jaw adjusting to it. My swallowing has greatly improved after shifting strategy. I'm taking digestive enzyme capsules and aloe vera gel capsules with meals, and downing some Gaviscon liquid before bed. Also ordered the UK Gaviscon apparently it's better than the US version.

Sorry my English is bad. What do you think of my scan? Do you see something not normal?

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Do you see something not normal?