Good morning, everyone. I came across this site recently and decided to join to read other’s stories and to tell mine.
I haven’t been officially diagnosed with Eagles syndrome, but I have many symptoms that I believe fit the criteria. Over the last few years, my symptoms have been getting worse. I did have a CT scan that was 3D rendered by Jeffrey Middleton who noticed the elongated styloid that was sitting over my carotid artery, but I can’t seem to get a diagnosis here in Michigan of Eagles syndrome. My symptoms consist of dizziness, visual issues, lightheadedness, sleep problems, right ear issues/draining issues, just feeling disconnected/out of it, if that makes sense.
My doctor has finally suggested I get a CTA done in the next couple of weeks here in Michigan. I guess my questions would be: would the CTA confirm this? Are my symptoms indicative of Eagles syndrome? If so, are you feeling better after the styloidectomy?
Hi @Lynny43 welcome. Your symptoms certainly point to vascular ES. Did your first CT include contrast? If you have access to this it maybe worth posting some images for further comments. My styloid process is also sitting against my external carotid artery. I can sympathise with the vascular symptoms they are very debilitating.
I do have a very detailed image that I was trying to post, but the site says I cannot post a media image I guess. I’m so glad I found someone who can sympathize with me! Most days, I just want to lie in bed and cry because these symptoms are pretty debilitating. I started a new job at a hospital last week and about after the 4th day, I felt so disconnected/lightheaded it was pretty rough. It’s not like I can tell my co-workers or boss that Im experiencing neurologic type issues because of my neck either, so I sit behind my computer and try to push through. Im sorry you are going through this too!
Ah thats because you are a new member, I believe there are some restrictions. Hopefully that will be lifted shortly once @Jules or @Isaiah_40_31 picks up your message. Wow starting a new job whilst dealing with VES symptoms must be extremely hard, I don’t think I could contemplate that. Fortunately my boss has allowed me to reduce my hours and also work from home, otherwise I would have to be on sick leave.
That’s nice your boss is allowing you to do that. I just have to get through 2 weeks on site and then my position will turn into remote also. I keep telling myself, just 2 weeks lol I really am focused on the health insurance, so I can get this thing figured out. Are you pursuing a surgery for your symptoms then? @Rosie
Yes I’m very fortunate, but I have been with my current employer for 24 years, so we’ve got a good relationship. I am in the UK so our health system is very different to the US. I have been going between NHS & private, its taken 15 months, but I am hoping my appointment with our top UK hospital next month will get me a definitive diagnosis. Then its a matter of what the NHS will do for me. I could have a private operation Styloid removal & C1 shave, but I can’t afford the cost and have no insurance. I hope you manage to get your insurance sorted. I am sure you will get lots of advice with regards to who you will be best to see.
Hi & welcome to the site!
I’m sorry that you’re feeling so rough, and having to start a new job as well is very hard. Hope you can push through so that you can work from home soon! @Rosie is right, because this was your first post you couldn’t upload any images, but I’ve altered that now so you should be able to, but make sure you remove any personal info off first to protect your privacy!
The fainting issues, dizziness & light headedness could well be being caused by the styloid process irritating or compressing your carotid artery. I just wonder with you mentioning the ear issues & feeling disconnected if you might have some internal jugular vein (IJV) compression as well. It’s unusual to have both carotid and venous compressions but it can happen. Given the symptoms you have, a CT scan with contrast is definitely a good idea, but I would push for it to be timed to show the arterial phase and the venous phase as well to check both if you can?
Many ENTs are unaware of ES, so that’s probably why you’re struggling to get a diagnosis. And if you have vascular ES as well, then it’s even trickier finding a doctor with experience. Here’s a link to the doctors list in case you haven’t seen it: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
It may be better if you’re able, to get a referral to an experienced vascular ES doctor, although it will mean travelling. Dr Hepworth in CO, Dr Costantino in NY, Dr Nakaji in AZ or possibly Dr Cognetti in PA are the doctors that we know most about, and they’ve done lots of successful surgeries.
Some of our members have multiple health conditions, so they may need different surgeries to cure all of these, but for the most part as long as people see an experienced doctor then the surgery is successful.
I hope you’re able to get a scan done!
Oooh, they look nasty long styloids! I can see what Dr Middleton has told you about the styloid on the carotid artery, there might be some jugular compression on the opposite side, but not easy to tell on that image…
Oh it looks like your CT included contrast and your styloids appear to be against your Internal Carotid Ateries and you may also have Internal Jugular Vein compression as well, its a bit hard to tell. If you can get access to your CT then other members can check the axial views, which should give you a better idea of what vascular structures are involved.
Ok, at least Im not the only one noticing these things besides Dr. Middleton. Thank you for looking. Hopefully, things can get further worked up and some of these symptoms will go away🙏
@Lynny43 I can help you assess whether your IJVs are being compressed by you styloids or not. Can you go to C1 in the axial view? I’ve attached my own imaging to help you know what to look for. It’s the top vertebrae and has a white circle in the top middle!
I’ll definitely try to locate this view! I’ve had so many CT scans, x-rays, MRIs, it’s ridiculous… Im not quite sure why they need another CTA when my post up top clearly shows the elongated styloid. I’m a bit leery of all the radiation im being exposed to now and just want the specialist to take them out, if possible. Thank you @TML
I hear ya on the radiation piece. Ive had 4 head/neck CTs, abdominal CT, neck xrays, and jaw xrays all in the past year. I think I heard a statistic the other day that for each CT you only cut off like 10 days off your life. That’s a population-based statistic though, not individual-based
Technically it’s even worse if you look at individual data. As humans we are very good at predicting population-level phenomena, but terrible at estimating phenomena at an individual-level.
I’m a clinical psychology student so I will give you a psychology example. Let’s say for over the past 10 years there has been 2 suicides per month in a community. So at the population-level we know two people are very likely at risk each month. But we are terrible at predicting which individuals are at risk (if we were good at it, there wouldn’t be suicides).
Same goes for the CT radiation-related risk. We know overall that one CT scan will reduce life expectancy by 10 days. But that number is only as small as it is because millions of people experience no impact, but thousands experience significantly reduced life expectancy due to the radiation - which when averaged out across everyone who has had a CT, reduces life expectancy by 10 das average. But it’s silly to look at it that way because at the individual level some people can experience decades off their lives. Some people can lay in the sun 10 hours a day their whole lives and never get cancer. So it’s really difficult and kinda pointless to look at things sometimes at the population level. Point is, less radiation is better and I think you don’t need another CTA
@Lynny43 might want to delete those images as they have your personal information on them. I zoomed into the imaging and took a screenshot. See annotated imaging attached.
Both of your IJVs are compressed between your styloids and C1. The average distance between styloids ans C1 in healthy population is about 9mm. I’d say you’re look at maybe half of that. IJV compression causes intracranial hypertension (headaches, pressure behind eyes, ear pressure, tinnitus, potentially dizziness). Also, the vagus nerves run between the IJVs and C1, so if your IJVs are compressed your vagus nerves may be too, which can result in acid reflux and heart rate /blood pressure fluctuations.
I highly suggest that if you get styloidectomies, get them cut above the level of C1. If you don’t, you’ll still experience intracranial hypertension symptoms.
I am so very thankful that you took the time to review that. I am really hoping that after all these years of struggling and having doctor after doctor tell me that I have anxiety issues, hormonal issues, etc. that potentially all of my symptoms are caused from my styloids/neck. I will take this information and discuss it with my doctor! I was given a list above I believe of different specialists in the US. I wonder if there is someone closer to the Michigan area that could do this, and I will have to investigate this further. I can’t thank you enough and this forum for all the knowledge and support.
I’ll let @Isaiah_40_31 / @Jules help you with the appropriate surgeon piece, as I’m less familiar in that regard.
I will also add another thing - your right IJV is dominant, as it’s quite a bit bigger than your left IJV. And the compression is worse with your right IJV. Compression of the dominant IJV can cause symptoms easier since the main outflow of your brain is being compressed. If the surgeon gives you a choice, I would vouch to get your right styloid removed first - because of what I just said + it looks like your right styloid is you longer one too based on your 3D model!
