Hi everyone! 28F in Minnesota. Timeline summary is basically living life as normal with issues → getting adult insurance and thinking I should check on things → dentist told me to get tonsillectomy and ENT performed the surgery → complications but throat swelling is much less and uvula shrunk in size → mother got eyelid surgery and I know mine are heavy so went to get my eye checked and here we are.
I’ve grown up having headaches off and on more so in the right eye than the other. Rarely are they debilitating, but usually I do have to nap to get them to subside. It’s more so a dull pain and I feel a tightness down to my jaw under my ear. Slight pressure. They diagnosed me with migraines at a young age. The kicker is it’s usually one sided behind my right eye (a great grandmother had cluster headaches). I also have a droopy right eyelid and not many notice as I compensate by lifting my eyes all of the time. I was fine living with it but wanted to make some changes in my life before I get older (eyelid and tonsils specifically).
I have also always had Level 3 tonsils, but never strep throat and so my tonsils were not taken out as a kid. My dentist told me to get them taken out, actually, due to the level of bacteria caused by large tonsils, and it blocking my airway. I was getting tonsil stones the size of small hail and choking and had so many cavities despite little to no plaque at each visit. Right before my tonsillectomy I had a CT as I have off and on swollen neck lymph nodes and the radiologist pointed out elongated styloid processes up to 4.4cm. Worse on the right side where most symptoms are. Their notes said “test for eagle syndrome” but my ENT did not test for this nor even acknowledge it. He also retired after my surgery (no shame in that).
As soon as I got out of my surgery I felt like I could breathe better (wooo!) but I also noticed my taste was off and not just from the cauterization. Things tasted so sweet for 6+ months and still do at times but pretty much normal now. I developed severe alternating anisocoria and mydriasis. Looking at past photos; the anisocoria was most likely always there but very subtle. An Ophthalmologist stated I had a long term silent migraine. I do not think this is the case.
Another issue that arose after surgery was tachycardia and faint feeling. Having to pass out after doing anything for 3+ hours and being so deliriously exhausted it was hard to move. I had this off and on perhaps due to anxiety but this was every. single. day. My blood pressure was spiking randomly to Hypertension II while sitting and would otherwise return to normal. This was written off as an ADHD med side effect and anxiety despite the fact that I have taken ADHD meds since I was 7 years old with no complications at all and rarely have I had a panic or anxiety attack let alone daily. My resting heart rate went from 72 to 86 with random bouts of tachy. I got put on a beta blocker and that has helped immensely. This is still a mystery to me.
Flash forward to now, 7 months later, and I saw a surgeon for a consult on my eye ptosis and he took measurements and became concerned. My right eye has ptosis, miosis, antisocoria and is sinking into my face. My pupils are throwing everyone off. He referred me to a neuro-Ophthalmologist professor at the University hospital to be tested for Horners Syndrome. Still waiting for this appointment. Note that sometimes the right pupil (with ptosis) is the bigger one!
In the meantime, I received a second CT with dye and this radiologist said NOTHING about the styloid processes. He also cannot see my eye sinking down or back despite it being measured that way in person. I have attached photos for reference. I have the two full CT scans and can show them if need be but I am not sure where to screen shot in the hundreds of images they provide… thank you ahead of time!
Does anyone have any idea what is going on? Any similar stories?
Welcome to our forum, @bee. I’m sorry for the mysterious symptoms you’ve got. I can see the difference in your eyes in the picture of you that you posted. Is your vision different in each eye or pretty equal? It does sound like your tonsils are better out than in especially with the dental issues they were causing. That’s the first time I’ve heard of tonsils harboring bacteria that can affect the teeth but it makes sense since they’re in close proximity to each other.
I’ve annotated your first image with a pink line to show where your right styloid is, and it is long! I can’t see the left one either because it’s not easily visible in the image or due to lack of experience reading x-rays on my part. I’m not surprised your ENT didn’t have knowledge of ES as that is a common situation. I’m sorry he didn’t though as you’d certainly be further along if he’d paid attention to the radiologists comment & at least researched ES before seeing you. I suppose it wasn’t of interest to him since he was close to retirement.
We’ve had one other member who was diagnosed w/ Horner’s Syndrome which was likely caused by ES since his styloid was tangling with his internal carotid artery, & Horner’s can be related to carotid artery issues.
I had the opposite eye issue as my left eye felt like it was being pushed out from behind. The pressure was intense. There was no physical manifestation of this, but I checked my eye several times a day to make sure it was staying put & not bulging out. Getting my left styloid removed did resolve that sensation. That’s not to say that yours is absolutely being caused by an elongated styloid. It is a curious problem and I’m sorry I don’t have any experience with a situation like yours so have no advice to give. Seeing the neuro ophthalmologist sounds like your best next step.
Swollen lymph nodes, heart palpitations/tachycardia and blood pressure increases/decreases can be symptoms of ES. The heart & bp symptoms are functions controlled/regulated by the vagus nerve which is very often irritated by elongated styloids. The vagus nerve is the largest of our cranial nerves & helps control quite a number of the body’s functions, so when it’s upset, symptoms can be quite diverse & widespread.
Because we’re not doctors, the best way for us to be able to look at your CT images & offer suggestions is if they’re in 3D format. radiantviewer.com is a 3D slicer program for PCs that converts CT images into 3D format. Bee Dicom Viewer App is best for Mac. A third option is to upload your images on dicomlibrary.com. The images will be converted to 3D & are supposed to be anonymized. Once uploaded to dicom library, you will receive a sharable link for each CT disc you upload.
I agree with @Isaiah_40_31 that your right styloid is definitely elongated, I couldn’t see the left side either…it’s interesting that your eye issues are with the right eye when that’s the side which is elongated. When there is jugular compression by the styloids or C1 process, that can raise the pressure inside the skull, which can compress the optic nerve, so some members have had problems with that, but your CT report says your optic nerves are fine…
As @Isaiah_40_31 says the vagus nerve can be irritated or compressed so that can cause BP changes, anxiety etc. Also if the carotid artery sinus is irritated, that can cause arrythmias I think, and the same if either the external or internal carotid artery walls are irritated, and compression of the carotid artery can cause fainting…
Could you get a referral to one of the doctors on our list who are experienced with ES while you wait for your appointment for the neuro-ophthalmologist?
I got the CTs on a disc and bought a disc drive reader to upload the image tomorrow hopefully! I finally scored the appointment to assess the Horner’s Syndrome cause and have to wait until 7/3. Not too bad considering it’s a Harvard trained doctor whose main job is a professor at a medical school.
Saw the oculoplastic surgeon again in the meantime and he agreed the styloid process could be compressing my artery even if I’m not in pain. Nerves are a sensitive thing. That made me feel a bit more encouraged. Luckily, at the University there are two doctors (also professors) who do know about Eagle Syndrome on that list and I am sure I can ask to be referred if need be. @Isaiah_40_31 adding you in case you were interested! Thank you for sending those 3D CT links. I’ll be sure to work on that tomorrow!
Thank you for tagging me in your post & good job being proactive, @bee! I hope you don’t find converting your CT images to 3D too challenging. Honestly, I couldn’t do mine myself. I went through dicomlibrary.com & let them do it for me then had to have people on here show me how to find the images of interest since I couldn’t even do that. Herein lies the disadvantage of not being very techy. I’ll use my age as excuse though it’s not a good one!
I look forward to seeing your images when you post them.
I posted a general post about it!! I could not use that website either I used the software instead. I think it is weird you can only use one image at a time and mine did not come in a zip folder.
I’ve annotated the top image as it shows that the ICA runs directly up to the tip of your styloid but it’s course is probably behind the right styloid. The tip of the styloid is possibly stabbing the ICA at the styloid/ICA junction. It may only be when your head is in certain positions, but it’s hard to tell if it’s constant or part-time from this image.
The red line simulates the part of your ICA that isn’t visible on the scan
