Hello! I’m so happy to have found this group. We’re investigating whether or not my husband may have Eagle’s syndrome. I’ll try to be organized. Thanks in advance for any responses!!!
First, his main symptom is pain on his head while wearing glasses, in the area right above his ears bilaterally where glasses temples touch. The pain comes within a few minutes of putting glasses on, and has become intolerable. It lasts for hours to days after glasses are removed, but eventually does go away and is not present when not wearing glasses. It started 4 years ago and has progressed somewhat. We’ve been through at least 8-10 pairs of lightweight, perfectly adjusted glasses, and his glasses have been adjusted at least 100 times. He can’t wear contacts due to other vision issues. He’s on gabapentin which used to take the edge off but is less effective as the pain progresses. As of the last few weeks, he simply can’t wear any of his glasses and is on leave from work (he’s a biostatistician in clinical research, usually on a computer). This is a stressful time for our family (I’m a stay at home mom with two small boys). I’ve searched the site and not found this exact symptom listed. We’re getting desperate for a solution.
Aside from the main symptom listed above, he also has: dizziness when he turns his head far to the right (like when reversing the car), dysfunctional eustachian tube on the right, jaw sensitive to getting bumped, slight pain deeper in the ear when pulling on right earlobe, and notably a history of a tonsillectomy that was botched, only partially completed, left him in pain for a year, and then completed a year later (around 2010-2011, done in Slovakia where his family lives, don’t get me started .
He had a CT w/o contrast last week and styloid processes are “3 cm” in the report, but actual measurements not directly stated. Ligaments are not mentioned. Our Kaiser doctors are ready to rule out Eagle based on this report.
We consider consulting with Dr. Samji even just to have him read the scans, but I’d love anyone’s intuition on our situation before we invest, since the whole thing would be out of pocket from start to finish.
Questions:
Anyone have the pain above the ear thing? Associated with glasses?
Worth having Dr. Samji read the scans himself?
Anyone have Eagle syndrome with ligament calcification only (assuming someone like Dr. Samji finds this in the scan) and not actual elongation of the styloid?
Any other advice/thoughts/comments/prayers welcome
Welcome to this awesome forum! I’m so glad you found us!! What a journey your husband has been on!
Here are detailed answers to your questions:
I’m not aware of anyone on the forum specifically had pain from the arms of eyeglasses. That said, the area where he has pain is near the starting point for the trigeminal nerve which is one of the cranial nerves often affected by ES. My guess would be that the pressure of the glasses on that nerve (or maybe the facial nerve) could be causing his pain. If he does have ES & these nerves are receiving additional irritation from elongated styloids/calcified stylohyoid ligaments, that might explain why his pain lasts so long once the glasses are removed.
Yes, it would be worthwhile having Dr. Samji read his scans & give a second opinion. He has a well trained eye for ES. It seems that no two radiologists will get the same styloid measurement when measuring them on a CT scan. Dr. Samji measures by looking at the slices, not the 3D models (those are more for us to visualize what’s going on), and basically ignores the radiology reports (from what I understand). He charges about $650 for a 45 min. phone consult & does offer a cash pay rate for surgery that is far below what he charges for people w/ insurance coverage.
We have had several members who had Kaiser insurance (including one from your state) who’ve elected to go outside the Kaiser system to have Dr. Samji do their surgeries. I recall we have one recent member in the Sacramento area who did have surgery at Kaiser there w/ a good outcome, but we haven’t heard much from her since she had her surgery. You can try privately emailing Ilovemaui2000 to ask how she’s doing now & what she thinks of her surgeons (she had two because her vascular involvement was pretty severe).
We do have members who had normal length styloids & s-h ligament calcification which started at the hyoid bone & “climbed up” toward the styloid process(es) w/o going the whole way up. That is also classified as ES. Some people have both elongated styloids & some ligament calcification & some are calcified from skull base to hyoid bone (which is more rare).
It is not always styloid length that causes symptoms. Normal length styloids that are extra thick, twisted, curved or pointed can also cause ES symptoms. The wide ranging symptoms of ES come from irritation of up to 6 of our 12 cranial nerves. An interesting study for you to do will be to look up images of the following cranial nerves to see where they are in the body. This can be very enlightening as far as understanding sources of pain & ES symptoms: Trigeminal, Facial, Glossopharyngeal, Hypoglossal, Vagus, & Accessory nerves.
In light of what you’ve written above, there is also a possibility your husband is getting vascular compression of either the internal carotid artery or the jugular vein when he turns his head. The only way to know this for sure is to have a CT scan w/ contrast w/ his head in the provocative position. I will say up front, Dr. Samji prefers a CT scan without contrast as it’s easier for him to see the styloids w/o all the soft tissues showing up, thus you made the right decision re: type of CT if you’re going to consult w/ Dr. Samji.
The possible causes of ES are 1) tonsillectomy - scar tissue puts pressure in the styloid area causing the body to lay down extra calcium for support & thus changing the size/shape of the styloid(s). 2) Neck or throat surgery in that area (same cause of styloid growth as in #1). 3) Neck/head injury 4) heredity 5) Parathyroid/thyroid problems, hormonal issues or ???
I actually developed this exact same symptom of pain where my glasses touched my head. I did not get it until immediately after my surgery, and then it occurred on the surgical side. It was very intense for about a week and then slowly dissipated. Now does not bother me at all. I did a bunch of weird things like sticking washcloths under my glasses that made me look extremely interesting. So I suppose this is an oddball symptom that can go along with nerve irritation in this part of the body
Interesting. And yet I’m so sorry you’re having such a hard time and your husband is in pain. I am a Premed student that quit classes this fall due to a lot of my pain, thankfully I am not the breadwinner but it’s still been challenging. I commend you for being a spouse that is eagerly looking for answers.
Just my own experience ,… I don’t need eyeglasses due to fairly decent vision, but in texas I do need sunglasses and wearing them can be very painful. I stretch out the pairs I do have so they are less tight and yet I still get excruciating pain above my ears where you mention at times. It will linger for hours.
I wonder if your husband also has a hard time with certain sounds? I nearly cry at high pitch sounds or like the the sounds of ice falling into a cup. I never had this before my ES flared up.
I think Isaiah has pretty much covered the info! It does sound as if it would be worth getting the scans looked at again, by Dr Samji. There are other nerve pain medications which it might be worth trying, like Amitriptyline, Nortriptyline, (there’s info in the Newbies Guide section, under ES Info- Treatments, you can search for that). Sometimes it can take a bit of time to find other medications, but given Gabapentin helped to start with it might be worth a try? Ben’s Friends also have a Facial pain group which you can look at without joining, but there might be ideas or info which could be helpful too?
Thank you so much for this incredible response. We so appreciate it! We got the ct w/o contrast specifically in case we do decide to consult with Dr. Samji. I think that we will, in the spirit of making sure we leave no stone unturned.
My husbands history of having two tonsillectomies, one of them quite botched up leaving him with residual tissue, inflammation, and pain for a whole year, is one of the reasons I’m interested in pursuing ES until the very end even though the rest of his presentation might be somewhat atypical.
Very interesting and I’m sorry you’ve had to take time off due to all this stuff. Sounds like you’d be in a bad spot if you did have to wear glasses full-time? And your ES is confirmed/diagnosed?
I haven’t heard him mention sensitivity to certain sounds. This sounds awful!
Thank you. Yes I think I’d be in trouble with having to do glasses all the time. Yes my eagles is diagnosed and I’ve had 1 surgery, that failed at providing relief. The tonsillectomy 1st approach made it worse. Now Plan is to have a second (thru neck) and maybe 3rd (other side) surgery and go from there to see if all the weird symptoms become less. Many with ES have ringing in the ears too, but mine is only after hearing those types of sounds and there is radiating pain with it, similar to the pain of wearing sunglasses. Looking at the anatomy it makes sense with all the nerves.
Ps. My ct sort of says the opposite of your husbands. Mine mentions calcified ligaments but no mention of styloid length (even tho I have seen them very long on xrays). Radiology reports seem to really vary based on who reads them. I really do think the advice to have the scans read by someone who sees / treats 100s of cases a year with this exact ear/neck area is important. And Dr. Samji is willing !
Ok I’ve been wracking my brain about how to maybe make glasses work better for your husband. It stuck with me all day how much this must be an issue. Here’s an image of one idea I found online. Since you have extra frames you have tried, I wonder if you could modify a tighter pair and make them like this some how and maybe get some use out of them that is less painful? Just a thought !!
@premedmom It’s so sweet of you to think of us!! That means a lot. This is a really interesting model and I’ll make sure to show him. I’ve done many similar google searches and last week found the MOST interesting sunglasses, which can be fitted with clear prescription lenses. The company has only been around for a year. Come to think of it, they may help you a lot! The link is: https://ombraz.com/. Let me know if you think they could help you!
Right now the idea of getting these frames fit with his prescription (which is quite complex, he has a lot of optical health issues aside from the nerve pain)- this idea is our most hopeful one. Even as we pursue a diagnosis of ES, we’d like to get him back to work. He’s ordering lenses this week so it will be a few weeks until we know if this will help us.
I’m sorry to hear your ES journey has been so rough. I hope your future surgeries are helpful. We have decided to try to consult with Dr. Samji- even just so he will read the scans for us. It’s worth it to us to “leave no stone unturned” and try to rule everything out.
Thanks again! I’m touched. It’s nice to talk to folks who understand.
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