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Eagle Syndrome - Online Support Group

Are there radiologists who specialize in reading for ES diagnosis?

Hi - I recently had a 3DCT Cone Beam done, but having difficulty finding someone to read it. I’ve been suffering with severe right sided pain from under my jaw, down the neck into the clavical area for 10 months. Onset was immediate after a dental procedure on the same side. (Jan 2019). In May 2019 I received diagnosis of cervical dystonia and have had 2 series of botox injections, but the severe nerve pain has become more intense, along with a number of other random symptoms that include feeling strangled, and losing my voice. MRI’s of C-Spine, Brain and Chest (for thoracic outlet) revealed nothing other than inflammation and spasm.
At a recent visit to my neuro, I explained to her that I had tried to map out the nerves affected, and believed it was 7, 9, 10 & 11. She mentioned ES, said it was super rare though, did some googling then said I would have my pain on the back of my head if that were it, and sent me on my way. I read about it and decided to find a cone beam xray the next day to rule that out.

I found a place to have this 3DCT done at a dental place. The Technician said it looks “broken” on my painful side- one is long and formed on my non-pain side, and one is shorter and looks broken off (but I don’t think they break off - it just looks that way). But he has also never looked at a sytloid process before. :slight_smile:

They don’t have radiology to send off to.

My pain doc reviewed and said it looks like a problem, but they are not trained to read either, then tried to send it to a radiologist, but they haven’t been able to get a reply in over a week.

They plan to send me to another imaging place to try again, but with ALL the imaging I’ve done I’m wondering…do I need to be looking for a specialist to actually perform and analyze the images?

If anyone has any recommendations I would greatly appreciate it. I’m attaching a picture of the 3d image that I screenshot while in the office.

Hi kristictr,

The type of scan you need to diagnose ES is a regular CT scan generally w/o contrast unless you have vascular symptoms (cranial hypertension, migraines & the like). Any radiology tech can do the scan. It should be taken of the area from the hyoid bone & skull base.

Good call on the cranial nerves you think might be affected. I would agree based on your symptoms. Six of the twelve cranial nerves run through the area where the styloids are & the varied symptoms caused by ES come from irritation of one or more of those nerves by the elongated styloid &/or calcified stylohyoid ligament (which also can cause ES symptoms). The six nerves in question are #5 Trigeminal (very commonly affected), #7 Facial (commonly affected), #9 Glossopharyngeal (commonly affected), #10 Vagus (very commonly affected & causes quite a diverse set of symptoms because of the size & length of this nerve), #11 Accessory (less commonly affected but not uncommon), #12 Hypoglossal (commonly affected).

Your neurologist if flat out wrong that you must have pain at the back of your head to be diagnosed w/ ES. Some doctors also believe that if you lack throat pain or the styloids can’t be palpated in the throat that ES is not the diagnosis. They are also usually wrong. The styloids often can’t be felt & some people don’t get a sore throat w/ ES even though that’s a very common symptom.

The styloids can break from something as simple as laughing hard or coughing. That little “loose” piece in your neck could absolutely be wreaking havoc w/ the nerves in that area. Additionally, though you don’t feel specific symptoms on the side w/ the elongated styloid, it could be contributing to the symptoms you are having. We do see “crossover” pain in ES where symptoms on one side are being caused by an elongated styloid on the other side. Also, in bilateral cases, once one styloid is removed, the remaining styloid can become very symptomatic leading one to believe the initial surgery was a failure when it was a great success.

Though TX is a huge state, our members from there have had a tough time finding a good ES doctor there. Many have chosen to travel to see more experienced ES doctors out of state. You’re in between two of those - Dr. Milligan in Phoenix, AZ, & Dr. Ness in Baton Rouge, AL. Several members have also traveled to San Jose, CA to see Dr. Samji who is likely the most experienced ES surgeon on our doctors’ list.

We generally prefer external surgery over intraoral as it allows better access to the styloid process so it can be removed at the skull base & not just shortened. Nerves & vascular tissues can be monitored during external surgery. It also provides access to the stylohyoid ligament should it need removal as well. Intraoral surgery is a little trickier when it comes to complete removal of the styloid & s-h ligament & has a higher post op infection rate but it does have its advantages.

Here’s the link to our US ES Doctors’ List:

I know this is a lot of information, but I hope it gives you some guidance you’re seeking.

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Thank you so much for the reply!! This is very helpful!

As I was typing this to the forum, my husband was googling radiologist who have experience in Eagle’s syndrome. We are from TX, but we are in Canada this week visiting for a long planned workshop on cervical dystonia, which has been my diagnosis since May. I don’t have the movement/tremor portion of CD, but my muscles on the right side did become hypertonic and spasmodic to the point they needed the botox injections to release. My husband reached out via email tonight to this radiologist, and the he replied and said we can come in on Wednesday to review my images! I will keep you posted and am very grateful for the reply! Groups like these are so amazing in paying it forward so that others may have the chance to reduce the length of their suffering. Much gratitude!

Both those cities are easy for us to get to, so we will reach out to them as well.

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Hi kristictr,

I’m glad my reply was helpful. You may find some relief from your cervical dystonia after having ES surgery. It is possible the elongated styloid &/or the broken one are causing some nerve irritation that is showing up as or at least contributing to CD. It will be interesting for you to see what the results of surgery are as far as helping to resolve your symptoms.

I’m glad you’ve found a Canadian radiologist to help you. It’s interesting that Canada as a whole has very few doctors who are familiar w/ ES & even fewer who will do surgery for it. Most of them in the eastern part of the country.

Second Isaiah’s advice! If you had a CT done then you can send it to Dr Samji’s office if you don’t get answers on your Canadian trip. I really don’t understand your neuro announcing you don’t have ES because you don’t have pain in the back of your head- that’s a less common symptom! And if you have a piece of bone floating about anywhere else in your body, doctors would likely be sympathetic & understand it was painful, but for some reason in the neck, where there’s a concentration of nerves & major blood vessels, it seems they dismiss it! Don’t get that…
I hope that you get some answers in Canada, let us know how you get on!

Thank you @Jules @Isaiah_40_31! In my neuro’s defense, I didn’t have this CT at the time. Their practice had done 4 MRI’s but no CT. So she hadn’t seen this when I went and told her about the cranial nerves - BUT she also didn’t order one - she said it’s rare and my pain pattern isn’t the same, then sent me away. I had to go find a dentist imaging center to do it. lol.

I will def send Dr. Samji the radiology report once we can find someone to interpret it! I’m sure everyone on this board can relate to this - but after spending almost a year in hell - after being completely healthy my whole life - I definitely want any surgery necessary done by an expert! No more guessing games! :slight_smile:

I’ll let you know if this Dr. in Canada is able to interpret it. @Isaiah_40_31I’ve been telling my husband since I got the CD diagnosis - we are missing something - I feel like something inside me is hurting me - tearing up my tissue from the inside. I mean it sounds silly but since february I’ve told all the doctors, it feels like there is a chicken bone poking me in my neck. Maybe it’s just calcification, but man oh man I felt SOMETHING there. And I have a TON of swelling in the space above my clavicles, and right lower jaw that has been there since early on - which all the docs noted as unusual for any of the issues they were evaluataing for me.

Glad to have found this group! I’ll let you know how it goes Wednesday!

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Hi! Welcome to the group! Your story does not sound “silly”. Not that long ago, someone posted that they felt like “two kids were fighting over a wishbone” in their throat. So - you’ve described your sensation quite well! Keep listening to your body and what you feel!

Hi kristictr,

For what it’s worth, Dr. Samji prefers to read the CT scans himself. He often disagrees w/ some of the information the radiologists provide - for example, styloid length. You’re the second forum member in short order to have a fractured styloid that is causing trouble. Daughter_of_the_King also has that problem. She has also recently contacted Dr. Samji.

Looking forward to reading what you learn from your appointment tomorrow.

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@Isaiah_40_31that is actually really really helpful to know! I thought we would have to have a 3rd party radiology report for Dr Samji before he would book consult! Will definitely give an update - our appt is at 8am today but they may not get it reviewed today, but we will def reach out to Dr Samji and get that ball rolling. :slight_smile: Thank you again!!

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Good luck today!

Glad to be of service to you! I hope all goes well today, too!

I’ve gotten that same sensation being strangled it wakes me from a dead sleep the last time it happened I thought someone broke in and tased my throat. It’s hard to explain to drs you get the side eye :eye: “you think someone is strangling you” for a long time I thought I must not be explaining it rt & every time it happens I lose my voice I’m almost scared to sleep I passed out the last time woke half hr later that finally got the drs attention I’m grateful my primary is aware of ES. & not that I wish that sensation on anyone being strangled or tased but hearing your story makes me feel more confident in the direction I’m going. I wish you the best & as I’m searching for answers I’ll be following you to hopefully help me find mine. To dance another day!! :dancer:t2::crossed_fingers:t2:

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final_dance,
I’m hoping you find the help you need. ASAP so you may dance for many days to come.

:heart:

Hi! Back from Canada, but with no answers yet. We are sending the imaging to Dr. Samji this week! So that was a great suggestion!

In Canada, the “Dr” who was going to review the CBCT had a family emergency and wasn’t there. We met with a fellow who said he looked at them and did they are under 3cm per a radiologist he ran them over to. We asked about the misshapen one on the pain side, and he said “she said they were not elongated so it’s not eagle syndrome”. We asked about the other calcifications we can see along the line and he said “they are not elongated so it’s not eagle syndrome”. :slight_smile: He suggested early stage MS - the 3rd time we’ve heard that, but I really dont’ think that’s it and my MRI’s are clear.

The pain practice back in Texas ordered my MRI’s with contrast, and reviewed while I was gone, and also said they see what appears to be calcifications along the line in my neck also, so they prepped my CD’s to be sent.

Interesting - my mom just told me when she was around 40 a dental xray showed calcifications on her on one side of the neck - the doctor said it “looked like buck-shot”. They biopsied one and it was calcified and they told her it was likely from an abscess she had following same sided wisdom teeth removal. So maybe another clue.

Also - my labs came back Friday and they called me Saturday and called in an antibiotic due to very high markers for bacterial infection. I don’t feel sick - I just hurt! :wink: But they are thinking maybe there is an infection in the bone. So the quest continues.

I know Dr. Samji is ENT in general, so even if not ES, maybe he can help me figure out the puzzle since it’s all there in the ENT area.

PS - in my workshop in Canada (which was for Cervical Dystonia - the diagnosis I got because my muscles became hypertonic and painful after the dental procedure, but I don’t have the other typical CD features like tremor or spasm). Many of the sensations of CD and ES overlap because both affect the cranial nerves, so if anyone on the board ever has ES ruled out, but still has the sensory sensations and pain related to the Cranial nerves, I’m happy to point them to some information on that. I actually believe his protocol (which is self training neuroplasticity to correct damage done to the communication pathways from the brain through the cranial nerves) could be helpful for those with ES who didn’t fully correct after the surgery. I will keep yall posted, and really appreciate the support!

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A bit up & down then, hope that Dr Samji can give you answers…interesting that your mum had calcification too.
The info about self training neuroplasticity sounds interesting; are you able to post a link or is that not allowed?
Hope that you don’t have to wait too long for Dr Samji!

Hi kristictr!

I’m going to insert my non-medical opinion here: As you’ve read, & as we’ve discussed, it’s not always styloid length that produces ES symptoms. Your misshapen styloid could certainly be causing trouble even at a normal length. Additionally, calcification on your stylohyoid ligament (which it sounds like you’ve seen) can also be a cause of ES symptoms in the absence of or alongside styloid elongation.

Additionally, reading a CT scan seems to be a somewhat inexact science as two different radiologists reading the same scan are likely to come up w/ two different styloid lengths & perhaps even different judgments as to whether or not you have s-h ligament calcification. I think that’s one reason Dr. Samji likes to read the scans himself. His opinion will be consistent according to his knowledge & understanding of ES & won’t be at the mercy of someone else’s opinion. (Does that make sense?)

I’m sorry to know you may have an infection adding to your discomfort. Hopefully the antibiotic will take charge of that in short order.

The Canadian workshop & what you learned about neuroplasticity sounds fascinating. I second Jules desire to get some information if you’re able to pass it along.

Thank you for catching us up. Please let us know what Dr. Samji says. I hope he feels he’s able to help you.

:blush: