Hello, I was diagnosed in 2021 by an ENT who i went to because I was feeling like something was stuck in my throat.. When looking in my throat he notice the spot on the left side and pushed on it and was that painful. I have headaches, head pain, neck pain, throat pain, jaw pain, arm pain on left side, eye pain and sevver ear pain. I having eye twiching on left and can make it twich also by yawning or by closing my eyes tight. I feel like someone has there hands around my neck and is choking me . My symptoms are worse when i lay down. I will usually wake up with a headache, when I finally get to sleep. I have tingling on both side of jaw bone. I have humming noise in ears. I feel like someone has put a tight rubber band oround my head. Nausea and some light headedness. Occasionally a voice change. In the last 2-3 years they have had hard time accessing a vein.
I have a consult with Dr. Costantino on March 18. I have attached a couple of the CT images. PLease tell me what you think. Anything I should ask about … THank you
I wish I had more knowledge about how to read these scans and only starting to play with the viewers I recently downloaded and pulled my own CT scan into. Based on 3D modeling, the styloids look pretty long to me but I cannot give you exact measurement without pulling it into software. The left is longer but the right one seems to curve back against a vein or artery that could cause issues especially if you are looking down. Hopefully someone else will come by soon and give you more detail.
I wonder if you got the radiology report with these Ct scans? Was there any lengths given? Just so you know, all your symptoms are similar to what many have us have experienced. I particularly have had flairs of severe ear pain, jaw and neck. I always wake up with a headache as well. Im sure others will give you questions to ask but my big ones are is there vascular compression, and what is your post op care protocols. A fellow patient came in with me to my last appt and recorded the consultation. I cannot tell you how much this helped me to listen to again & again and to get her take on the whole thing.
These are very telling symptoms of internal jugular vein compression. Vocal changes are usually the result of vagus nerve irritation. As the vagus nerve & IJV are side by side in the carotid sheath up near the skull base, when the IJV get squashed by the styloid, C1 or both, the vagus nerve is also compromised. That would also explain your nausea as the vagus heavily influences gastrointestinal function, too. Your left IJV is your dominant one w/ the right one being more diminutive.
Headaches upon waking can be somewhat controlled by sleeping w/ head & shoulders being elevated at night when you sleep though it won’t cure them, that can help you sleep better & hopefully not wake up with a headache.
Your other symptoms are related to other nerves (facial, trigeminal & glossopharyngeal) which are also often irritated by styloids that are as long & thick as yours. I agree w/ @Snapple2020, the backward curve of the tip of your right styloid could be causing compression at C2 & it also looks like your C1 vertebra may be causing compression above that point as well. It’s hard to tell for sure about C2 because of the distortion of the image at that level.
You’ve lost the natural lordotic cervical curve which can be your body’s way of compensating for your IJV compressions to create more space for the IJVs so they can be more open, but more often it’s a function of poor posture over the years i.e. too much time spent looking down at a cell phone, computer screen, books when reading & activities of daily living. It’s possible to correct the curve but it takes patience & time doing gentle PT exercises.
We know Dr. Costantino is very experienced w/ vES so you don’t need to ask about his level of experience but you could ask him to clarify where he sees IJV compressions, have him explain his surgical procedure & expected recovery time (anything less than 6-12 months isn’t realistic). He operates together w/ Dr. Tobias so you can ask questions about what Dr. Tobias does besides shaving C1 & how that’s done.
I’ve annotated your images. It looks like you may have bilateral IJV compression w/ it being worse on the left side. I’ve marked what appear to be collateral veins on your images. These develop to help with blood outflow from your brain when the IJVs aren’t working efficiently. They can cause occipital pain. Your right internal carotid artery (ICA) where I marked it has a bulge which could indicate some compression there, too. I think the other things I’ve marked are pretty clear, but if you have questions, please ask.
They’re impressive styloids! Very long, unusual to see them so straight…looks like you have some compression of your internal jugular veins (IJVs) between the styloids & the C1 processes, more significant on your right side, but it looks like this is the smaller IJV. The left looks like it’s compressed a bit, this is the dominant IJV.
Your symptoms sound like they could indicate IJV compression too; if you try sleeping propped up a bit that might help with your headaches…
Good that your seeing Dr Costantino, he’s very knowledgeable with vascular ES… @Isaiah_40_31 has given you good info & labeling!
thanks you Isaih and Jules for your response. I have also attached the CT written impression report and just a picture inside mouth where you can see and feel the styloid on left.
Impression:
Calcifications of bilateral stylohyoid ligaments with mild mass effect on the right ICA and internal jugular vein and left internal jugular vein, consistent with given history of Eagle syndrome
My ear pain, jaw and neck(back of neck and side left side) pain are constant all of the time. I did not notice the right curves back thanks
this is what the report said no lengths given
Impression:
Calcifications of bilateral stylohyoid ligaments with mild mass effect on the right ICA and internal jugular vein and left internal jugular vein, consistent with given history of Eagle syndrome
You sound like you are in the right hands and on the right road! Isaiah, I was hoping you would come along and damn girl, you are getting good at annotating those scans. AMAZING work and very educational
Pretty scary that your styloid is poking into your throat like that! I can imagine it’s very painful!!
I suspect it’s the curve of the right styloid that may be poking your right ICA. That may be what’s causing the bulge in it that can be seen in the image where I annotated your ICA.
With both your IJVs being noted as somewhat compressed (mass effect) by your styloids, you’ll do best to see one of the surgeons on our Doctors List who do IJV decompression surgeries + styloidectomies. Dr. Costantino in White Plains, NY, or Dr. Cognetti in Philadelphia, PA, would be good options although the wait to see Dr. Cognetti is quite long at this point. Dr. Liu’s name has also recently come up but we’re not sure how experienced he is with IJV decompression. It would be worth having a consult with him if you could get in significantly sooner than w/ the other two doctors I mentioned.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves David M Cognetti MD | Jefferson Health Does do online or phone consults.
