So I had an MRI done to rule out anything else besides my Eagles Diagnosis. The Neuro I went to said Eagles DOES NOT cause TN. He thinks the ES was just a “red herring” He did admit to knowing very little about Eagles(surprise surprise) and referred me out to someone who specializes in TN I meet with Monday. Ironically the referral he’s sending me to works in the same office and practice as Dr. Constantino.
Question does the compression they are seeing below mean it could be ES causing the problem? ES causing compression of the TN nerve? I am now so confused. I wish these doctors could give me more concrete answers.
Your name is showing up on your document. You might want to delete it.
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Hi @Donoel,
FYI, I edited your personal information (Name/DOB) out of your report for protection of your personal privacy.
The neuro you went to is wrong. TN is one of the most common symptoms of ES, however, from your report, I could conclude that your TN is being irritated by the vascular loop that is in contact with it & possibly not by your styloid. It’s unfortunate that since they could see the TN in the scan, nothing was said about whether or not the styloid was also impacting the nerve. You can request that your scan be re-read by the radiologist to specifically look for possible impact on your TN by your styloid as well as the vascular loop.
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If it is just the vessel compressing the nerve then a microvascular decompression surgery would be helpful…but I agree with @Isaiah_40_31 that as there’s no mention of the styloids you can’t know what impact they may or may not have!
It’s amazing that a doctor can decide that ES doesn’t cause TN, when he knows nothing about it…there are published research papers which state it does and has resolved with surgery.
It is worth seeing the doctor you’ve been referred to; if they work in the same office as Dr C then might be more aware of ES…maybe you could fit a sneaky visit in to see Dr C at the same time 
Just out of interest what are you worst symptoms? The pain in your throat would be more likely to be caused by Glossopharyngeal Neuralgia, whereas TN causes pain in the jaw, teeth, face etc. Do you have both? Just that if you do have both & had ES surgery , it might resolve one & not the other?
Also was it a standard MRI which picked up the compression, or did you have the FIESTA/ Ciss MRI we’ve heard about?
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Hi @Jules and @Isaiah_40_31 thank you so much for the quick response. I have a call out to the neurologist office to talk to him. I just sent Dr. C’s office my report so he can take a look at it.
My worst symptoms:
-Pain at the base of my tongue
-Dull ache in one side of my head
-Jaw pain made worse by move lower jaw forwards
-Pain in my neck where the neck meets the skull
-Tenderness and swollen lymph nodes along jawline
-Globus feeling (one side of throat)
The neurologist that referred me said that TN can have pain that radiates to the GPN and can mimic that pain.
The compression came off a regular MRI with contrast. I have not had a FIESTA/Ciss MRI.
The Neurosurgeon I am seeing Monday is Dr. de Lotbinière. So hopefully he and Dr. C can work on my case together and point me in the right direction the right path forwards.
I dont know if I will need both the Styloidectomy AND MVD. Or if they will want to try one over the other first?
I wonder why Dr. Constantino didn’t think it was Trigeminial neuralgia?
I feel so lost like these doctors are just guessing and hoping it’s right. I feel so depressed and I am tired of being in pain.
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Base of the tongue pain is most certainly being caused by your GPN (another regular victim of ES) & likely the cause of the globus feeling, too. Pain on the side of your head, in the jaw joint, along jawline & swollen glands is most likely from your TN. Searching skull base pain results in the occipital nerve being blamed but it can also be caused by the vagus nerve as it exits the skull in an area where the styloids can bother it. I had terrible bilateral skull base pain as one of my symptoms & it went away after my styloids were shortened.
A CT scan, probably w/ contrast, is what you need to get the best look at what’s going on in your neck regarding your styloids. It’s interesting that the TN could be seen in your original MRI as we’ve been led to believe that nerves aren’t visible unless one of the specialized scans @Jules mentioned is done.
Here’s the trigeminal nerve:
Vagus nerve:
https://forum.livingwitheagle.org/uploads/short-url/ezcqNUd46r9Sf7faoDpK9UzY0oj.docx
Glossopharyngeal nerve:
Overview of cranial nerve functions:
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It is frustrating, but I guess to be fair sometimes it’s not always clear what causes what, and certainly with regard to a styloidectomy vs an MVD surgery it’s probably impossible to say which you’d need, & indeed maybe both as you say. So often the ES surgery is done with a view to hoping all symptoms resolve & you have to wait & see what does, unfortunately…
Looking at your list of symptoms, personally I’d say they lean more towards ES rather than ‘just’ TN caused by a blood vessel, but obviously we’re not doctors!
I hope that you can get some answers & treatment 
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Hi @Jules and @Isaiah_40_31
I went and saw the Neurosurgeon that’s in Dr… Constantinos group. He did confirm he sees compression of my TN. He does NOT think I have TN. He said he doesn’t know enough about ES to say its the Styloid causing these issues so he is going to talk with Dr. Constantino and compare notes but that he would recommend a styloidectomy over an MVD surgery for me (we aren’t there yet where he feels like that would be what I need). He also wants me to follow up with one of his collegues from yale who specializes in facial pain disorders and headache syndromes so that I have someone working on a care plan until I decide if I want to go with the styloidectomy or not. He also said that I should follow up with Dr. Constantino to see what he thinks.
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@Jules and @Isaiah_40_31 I have gotten multiple CT scans at this point with and without contrast and all my radiology reports mention “bilateral ossification of the stylohyoid ligaments”
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@Donoel - The calcified stylohyoid ligament is the lower piece of calcified bone below your styloid in the picture you posted. Yours is curved & pointed at the tip, both are features that can bring it into closer contact with nerves, vascular & other soft tissues causing pain.
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Good that they’re arranging appointments/ follow-ups and a care plan for you…that’s quite a pointy looking calcification you have!
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@Jules Yes Dr. Constantino referred to it a “harpoon” in my neck. He mentioned due to my anatomy being small (I am 4’11") even a styloid like mine that’s 2.8 cm in length if its angled like mine is could cause a lot of issues.
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@Donoel - It’s good to know Dr. Costantino considers the styloid anatomy as a contributor to symptoms & also your physical size as that definitely plays into the length of styloid that can be problematic.
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Oh definitely, from a fellow shorty! It’s surprising that many doctors don’t factor in a patient’s height as well…
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