Hi, I’d like you all’s opinion on the attached images. One is from 10/14 and one is from 3/23. First is it possible to have ES and have zero symptoms? Here is my story. I have had zero symptoms until October of 2023. My symptoms are primarily neck pain, I can’t turn my head to the left/right very far or look up without pain. When I wake up from sleep most days I feel this huge pop in my neck like things are snapping into place. I can hear clicking/cracking when I move my ear towards my shoulder on each side, sometimes when I go left doing this there is a good snap that actually gives me some relief. I hear clicking/cracking in jaws and what feels like back of throat when I yawn. I have what feels like consistent full ears or ear pressure and a consistent dull pain behind and below my ears. I have finger numbness/tingling in both hands, it’s worse in the right, and sometimes it’s hard to bend fingers or I have increased pain. I have brain fog and my short term/working memory seem pretty bad in the morning and gets better as the day goes along. I’ve always had perfect eyesight but March of this year the Optometrist said I have very slight exophoria and prescribed me prism lenses. I feel like they have helped but I feel like my eyesight is getting worse with them. I also have lightheadedness and feel off balance sometimes. I don’t know if it’s anxiety but sometimes I feel like a complete imbecile in social situations with lots of people, I can’t focus and have a hard time navigating large crowds which has never been an issue for me. I also was diagnosed with mild obstructive sleep apnea in January and have been using a CPAP since then. I take a thyroid replacement as I have no thyroid so that could account for some of the cognitive issues when my levels are off. So October of 2023 I got x-rays and the radiologist did make a note about Eagles Syndrome but I decided to give PT, Chiro, and Massage therapy a try. They all help give me short term relief but nothing longstanding. I have tried every pillow you can imagine chalking it up to a bad pillow. I also had MRIs of my cervical and thoracic spine which came back fine and the radiologist didn’t remark anything about ES. My current provider whom I’m going back to see tomorrow doesn’t think I have ES based off the MRI results. I sent her the images I attached and I am going to discuss with her tomorrow to see if she will refer me to a specialist. What is the best specialist to be referred to? I will say I am still able to stay pretty active and activity helps with the pain. I lift lightly twice a week and I play pickleball 2-3 times a week. I live in Oklahoma and I’m 43. Is it ES causing these symptoms or am I getting old and breaking down? Thank you so much for this community and help!
I can’t download your images to annotate them, but yes, your styloids both look long, & the right one is pretty thick at the top & looks jointed (not uncommon). Both are visible outside of your mandible but also behind your mandible. Since you have symptoms consistent w/ ES, I would say that will most likely be your diagnosis.
These are the two doctors on our list for your state who have experience w/ ES & ES surgery. You need to get a CT scan for an accurate diagnosis.
Just saw my provider and she is referring me to an endocrinologist (to rule out auto-immune) and a neurologist (check nerves, carpal tunnel). My labs showed elevation that about 20% of people have but not high enough to specifically say I have an auto-immune disease. My provider wants me to do labs when I feel the worst in my hands especially to try to potentially catch a flare up. She also recommended seeing a Dentist for TMJ. She won’t even really discuss ES, said the Dental Pano’s were at a weird angle and my cervical MRI didn’t show anything.
They’re definitely very long, and your symptoms are common with ES, so it’s definitely worth looking in to this! It is quite possible to have elongated styloids & to not have symptoms, as I mentioned in the welcome message I sent, it can be as we age that the connective tissue weakens & shifts the positions of neck structures, so the styloids could then come into contact with different nerves.
Some of your symptoms possibly sound like vascular ES- Internal Jugular Vein compression can cause light headedness/ off balance feeling, brain fog, head & ear pressure, so if you are able to get a CT with contrast then hopefully this would show if the IJVs are being affected. If your lightheadedness etc feel worse in certain positions, sometimes it can be possible to get a CT done dynamically, with your head in that position, although this isn’t always possible.
The arm numbness could possibly be down to compression of the spinal accessory nerve, this is common with ES, although there are other possibilities- some members have had Thoracic Outlet Syndrome, where nerves or blood vessels get compressed at the top of the chest, it’s rare as well, & not linked to ES but it seems several have had both…
I wouldn’t have any chiro/ PT/ massage treatment unless they are knowledgeable about ES as more hard than good can be done. Re pillows, I found the best way to get some sleep was to use a wedge pillow & to sleep propped up, it can help with the head & ear pressure.
MRIs don’t show the styloids at all well, so that’s why the radiologist didn’t mention them , so your ENT is wrong to dismiss ES based on that. (although even with a CT which shows them clearly many don’t comment unless specifically asked to.)
I hope that you can get a referral to someone with experience!
@BLPICCOL71 - Dr. Krempl has been mentioned on our forum more than Dr. Snell because he’s been doing ES surgeries for longer. That would make him more experienced w/ ES surgeries.
You asked about the specific type of CT that is the gold standard. Either a CT with or without will do the job. It’s doctor’s preference as some want the CT done w/o & some don’t care if it’s w/ or w/o. As Jules noted, you do have symptoms that could point to vES so getting a CT w/ contrast would be better in your case.
If you’re found to have IJV compression, you’d do best to see Dr. Hepworth in Denver or Dr. Nakaji in Phoenix as they specialize in vES.
My provider called me after my appointment and wanted me to do a Head MRI (with and without contrast) to cover all the bases which I’m doing 9/9/24. I spoke with the Radiology supervisor and asked if she can have the radiologist read my 2022 CT, 2023 X-Ray where the Eagle syndrome was remarked, 2024 MRI of neck, and the Head MRI specifically looking for ES. That is what she is going to put in the notes besides what my provider put in.
@BLPICCOL71 - Do you know your doctor’s reason for ordering an MRI vs a CT scan? MRIs are not nearly as good for seeing the styloids because they image soft tissues. The styloids, which are bone, show up well on a CT scan which is a type of x-ray & are often “buried” beneath the soft tissues viewed in an MRI scan. However, with current technology, & the correct software, layers can be peeled back so the styloids are ultimately visible.
Just my two cents - If I were you, I’d contact the doctor & request a change to a CT w/ & w/o contrast which is iodine based instead of an MRI as it will be more helpful. Plus, the contrast for an MRI is gadolinium based. Gadolinium is a heavy metal which the body doesn’t easily discard, & some people have problems from it after receiving it as MRI contrast.
Good idea to get them to re-look at the other scans you’ve had, & I understand that they want to cover all bases, it can be useful to check out other issues in that area, but certainly worth you researching the MRI contrast as @Isaiah_40_31 says so you’re making an informed choice. @vdm did a very informative post about this: MRI contrast risks / Gadolinium toxicity - General - Living with Eagle
My provider isn’t really focusing on the styloids b/c she doesn’t believe I have ES since the cervical MRI didn’t have any remarks about it. She is doing the MRI b/c she thinks the neurologist would want that done prior and before she refers me to one. I’m leaning towards doing the MRI without contrast just so the Radiologist will look at all the old imaging and look for ES closer. Also if it’s an MRI without contrast of the head it can’t hurt right?
I’m so confused and worn out at this point to be honest. I don’t know if it’s vascular ES, anxiety, or a mixture of both…ugh!
An MRI w/o contrast is safe. It’s magnetic imaging vs x-ray. It’s fine for you to follow your doctor’s orders & perhaps once the neurologist sees your MRI, he will be willing to refer you for a CT scan w/ contrast to check for ES.
I’m sorry all this is taking a toll on you. It’s rough to be making the rounds w/ doctors when you feel lousy but the emotional part of not getting answers just compounds everything.
It’s frustrating isn’t it? Takes alot of strength & determination to keep pushing for the correct diagnosis…a bit frustrating that she won’t look at ES just because the MRI report didn’t mention it, when we know that the styloids don’t show well on an MRI so that’s probably why it wasn’t commented on
Hang in there, & hopefully you’ll have some answers soon- but lots of us have strange symptoms & unfortunately it’s not always possible to find out if they are down to ES or not, often it’s a case of wait until after surgery, & see what goes!
An MRI w/o contrast will pretty much show what an MRI with contrast will but the one with will show greater detail correct? So if I do the MRI w/o contrast and they find something then need the MRI with contrast we can always do that later and take the safer approach? I’m just hopeful nothing shows up on the MRI w/o contrast but the Radiologist looks at all my older imaging to at least make mention of long styloid processes and potentially ES. It doesn’t help I have no thyroid and take thyroid replacement and my levels have been all over the place…makes this even more difficult to manage mentally!
You are correct. If you have the MRI w/o contrast & something questionable shows up, you can have one w/ contrast later on. I had an MRV 1.5 yrs ago & that requires contrast. The only side effect I had was a headache for about 5 days afterward. I typically don’t have a problem w/ headaches so that was annoying. Other people do get worse reactions though as we mentioned previously.
Check this out…I visited my Optometrist office this afternoon to have them check my prescription and tell them about vision symptoms, head aches, confusion, memory fog, etc. when using my computer or reading on my computer. I’ve had prism lenses since March and when they first gave them to me they gave me a progressive lens but I couldn’t do the progressive so they got me a distance lens instead. So they checked the lens for prescription and prism and low and behold there hasn’t been a prism in the lens! They are going to get me new lenses with prism in them and in the mean time I just switched to my progressive ones with prism and it’s made a world of difference! Monday the plan is for head MRI w/o contrast and a MRA w/o contrast. I’ll let you all know what the Radiologist says.
WOW! What a simple fix or at least partial remedy for you w/ the change in glasses, @BLPICCOL71. I’m so glad you’ve been given a break of a sort from your worst symptoms. I look forward to hearing how the MRI/MRA go. I didn’t know they could do an MRA w/o contrast. I would have requested my MRV that way if I had!
No restricted diffusion is present to suggest acute stroke. There is no hydrocephalus, herniation or hemorrhage.
Few FLAIR hyperintense foci are seen in the corona raiata and centrum semiovalve. These are nonspecific. Primary consideration is of chronic microvascular ischemic change. However, demyelination cannot be excluded. Clinical correlation is recommended.
Major arterial and venous structures maintain normal flow voids. Calvarium and extracranial soft tissues are unremarkable.
Impression:
FLAIR hyperintense signal change in the superatentorial white matter with primary consideration of chronic microvascular ischemic change. However, demyelination is not excluded.
My doctor is going to do ultrasound of my carotid and also refer me to a cardiologist for an ultrasound of my heart. Referring me to a neurologist but that could take awhile. My doctor also mentioned this could be due to small migraines and wanted to know if I wanted to try a medicine to see if that helps…gabapentin or topamax. Nothing has been said about ES.
Well it’s good news that they don’t suspect an acute stroke at al, and that there seems to be normal blood flow…the hyperintense foci (white spots) aren’t always symptomatic, a friend has just been put through months of worry over these showing on an MRI but she has no symptoms so nothing else untoward has been diagnosed…But good to get this seen by a neuro to be on the safe side.
But really you’re no further forward with ES, I would say the next step would be to push for a CT & get a referral to one of the doctors who knows about this…there is info on here about advocating for yourself ; you had the MRI as your doctor requested, but there’s no reason why you couldn’t be getting ES looked into while you wait for the neuro appointment. Here’s a link to the advocacy section: Latest Patient Self Advocacy/How to Self-advocate and Be Heard topics - Living with Eagle
Keep strong, it’s not easy I know
