@elijah - I don’t have an answer for your question, & I’m traveling right now & have inconsistent internet access. I will try to find an answer that is satisfactory for you. All I can say is that many of our members, including me, had/have ES related TN that resolved or mostly resolved after our styloids were removed. I do have a little problem still w/ mine because I have bad TMJ especially on the right side, so when I have trigeminal nerve pain, it’s almost always on the right.
If you haven’t read the two posts Jules made about ES symptoms several years ago, you should. Your question about TN might be answered in one of them. Use the magnifying glass icon to search symptoms. Her posts are the first two at the top of the list that comes up.
Thanks as always for the advice. I was avoiding Dr. Hackman because North Carolina is quite a drive from me, but I might as well send a scan his way too.
I don’t know about the US system, but in the UK a GP/ primary care doctor can prescribe nerve pain medications without a diagnosis, I guess not the blood thinners maybe…
There are quite a few mentions in research papers about it being one of the cranial nerves affected, & one research paper discussing a lady who’s TN was improved after surgery…I agree the trigeminal ganglion is in the jaw area, I’d always presumed that the styloid could perhaps compress structures near the foramen where the root exits the skull base, can’t find anything definitive about that though! The facial nerve does follow similar pathways as the Trigeminal nerve around the face & is another nerve affected by ES.
Here’s a link to the Newbies Guide piece: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Today I saw a neuroradiologist/neurosurgeon who said the following:
- I likely have IJV compression
- we need more imaging to confirm
- he will refer me to an ENT specialist to assess the styloid involvement
- ENT will likely order a swallow test/x-ray video to see what's going on
- he will order an angiogram to confirm or rule out compression
- I can't really do anything for the symptoms until we get more info
I am very excited to get a referral so I can finally see someone familiar with ES! Hopefully it doesn’t take another 2 months to get the test done.
Also, @KoolDude, it seems like your assessments were spot-on! He said pretty much the same things you did but with the caveats that he couldn’t be completely sure without further testing. He even went over the neck bone vs. styloid process stuff and confirmed everything you said about the dominant right IJV.
@blistle Good to hear that at least the neuroradiologist/neurosurgeon that you saw cares enough to send you more tests. The one thing that will help establish this, is the angiogram/venogram which might determine how bad the compression is from blood-flow perspective. The thing I was able to find in your imaging was that your dominant IJV compression is primarily caused by C1 more than the Styloid so I am afraid that removing the Styloid only might not fully open up the IJV. Anyways, good progress.
He is doctor so he needs to establish this with further imaging. I am not a doctor so I can hypothesize and give a forgone conclusion . He seems to be knowledgeable and is doing the right thing to confirm this.
Good news that you’re being referred! The extra imaging will help, quite a few members have been referred for swallowing tests but it rarely shows anything, I guess another hoop to go through to rule other things out though. Hope you don’t have to wait too long!
Do you happen to have those specific posts handy? I’m wondering what the next step would be after “failing” a swallow test. Did they for sure have ES & still nothing showed up?
Another update!! I finally heard back from Dr. Cognetti & scheduled a virtual consult in March 2023 (soonest appointment they had). I think this means they saw my scans & thought it was worth looking into?
If anyone is wondering what to expect after sending scans in, expect to wait a while. I also recommend not sending the scans yourself (have the imaging facility do it) or they might not take them (despite what the people on the phone might tell you), which adds more waiting time.
I’m so glad you have an appt. @blistle but sorry it’s a ways off. Did you by chance ask to be put on a cancellation list? If not, call tomorrow & ask to be added. Some of our members have gotten their appts moved up significantly that way.
I saw an ENT surgeon that vascular neurosurgeon referred me to. After viewing my imaging he thinks ES is not likely. He can’t prescribe me anything but recommends I see yet another doctor to get a gabapentin script. His hunch is that I have glossopharengial neuralgia and atypical migraines because bilateral ES is so rare. He didn’t really have an answer for how neuralgia could produce the feeling of pressure, pulsating neck and head, and clicking I have. I also don’t know if neuralgia would make my neck hurt to touch & put weight on.
We went over the C1 thing too & how I need more imaging and referrals and appointments to get that figured out.
He’s going to order more detailed imaging to be thorough (what that means exactly, idk) and says the swallow test the other doctor mentioned is useless here.
Currently wondering if I just have nerve damage from a botched tonsillectomy & waiting very patiently for all this imaging.
It sounds like this doctor, as so many others have, is dismissing the possibility of ES “because it’s so rare”. Makes me mad!! It’s like being innocent till proven guilty! Let’s not dismiss it until it’s proven to not be so!! Glossopharyngeal neuralgia (GN) is an extremely common ES symptom along w/ Trigeminal neuralgia (TN). The sensitivity of your neck & pressure, feeling of pulsation in your neck & head all point to a vascular problem of some sort which could very likely involve your styloids. Remember, it’s not just length that can cause a BIG problem. Normal length styloids that are very thick or angled, twisted or pointed can cause the same problems as longer styloids w/ or w/o those features. Even calcified stylohyoid ligaments can occasionally cause vascular compression so those need to be looked at as well. Make sure whatever CT scan you get covers from skull base to hyoid bone w/ a focus on the styloid processes.
I agree that a swallow test will be worthless. Most of our members who’ve had them have found them to be a waste of time & $.
I’m glad your ENT has at least acknowledged that more testing is needed & is willing to refer you for it. That’s huge!!
@blistle i think I agree with @Isaiah_40_31 but even will go further and say this ENT you saw is out to lunch in terms of his knowledge of Eagle Syndrome. It is obvious in your CTV that your C1 is compressing your Jugular Vein. One can’t miss it if he /she knows it.
Eagle syndrome is primarily diagnosed by 2 types of doctors. Neurovascular Doctor through imaging like Catheter angiogram/venogram if you have the vascular version of ES.
It is also diagnosed by ENT specialist familiar with ES if you have the classic elongated Styloid variant which is based on the length of the Styloid.
I do think you have the vascular version (Jugular compression by C1) so I would go and get blood flow test like Catheter Angiogram/Venogram done.!
I think your Neurosurgeon can request Angiogram done.
That’s the plan. I’m waiting to schedule a catheter angiogramv/venogram with the neurosurgeon; he ordered it when I saw him 2 weeks ago but I have no idea when they’ll get back to me about it. I can call and leave more messages with the scheduler but I don’t think that’s going to help.
I’m super hesitant to show these people the scans that are marked up because they generally seem to get offended and stop taking things seriously if you show them you’re looking into things yourself at all. & right now I’m at least being taken seriously even if they don’t think ES is possible.
So now it’s about trying to get on gabapentin ASAP and hope that allows me to be somewhat functional while I wait for all these things to go through. Thx for the input as always.
So frustrating that he didn’t understand ES & has fobbed you off, but at least you’re on the path for more testing…If the Gabapentin doesn’t help there are other medications to try…I hope that you hear soon about the venogram! Sending you a hug
Imaging is set for the 4th assuming I can get pre-surgery test approval (forgot I needed an ECG, rushed and got it done today, failed the ECG-- apparently something is wonky there and I’m wondering if it’s maybe contributing to the vein stenosis or caused by/exacerbated by it.) If I can’t get cleared in time they’re willing to reschedule the procedure for mid-January, which is wonderful.
I’m on pregablin now because gabapentin made me a little crazy. Hoping for less side effects on this med. Definitely noticing some pain come back on the lower dose that I am now on though.
I also started physical therapy for a bunch of things including the neck tightness/spasming which I assume is ES-related. It’s been shockingly helpful for the neck; I highly recommend trying it out to anyone who’s curious.
Sending all positive vibes for you for the 4th!! Thanks for the info on PT I definitely feel I need to do something with my neck shoulder area my whole neck is still quite puffy and sore from bilateral surgery 2 months ago. So next conversation with my surgeon in a few weeks I’m going to inquire if I continue to feel this way. Keep us posted!!
. He seems to be knowledgeable and is doing the right thing to confirm this.