I had a long-time-coming appointment today with the maxillofacial department of my city’s hospital. Before going in, I had planned to ask them to write out a referral for a CT scan (I’ve had an MRI on my neck but never a CT).
However, during the appointment they looked through my records and came across a CT scan I’d had nearly a year ago to check for sinusitis. Apparently, this happened to cover the entire head to the base of the neck.
So they looked at my styloids on those images and found that my right was marginally longer than my left, but apparently not long enough to be causing my symptoms. And… that was it. I was admittedly a little flummoxed and didn’t ask as many questions as I should have, and so I left the hospital with no real idea what to do next.
My first question, obviously, is: is that enough to rule out ES? I’m not familiar with how imaging works, and since my neck wasn’t the focus of the CT does that mean it could be less detailed? Also I don’t think it was a 3D scan, so could it have missed something important? I can also get the images of the scan myself - if I posted them here, would anyone be able to look at them? (That was 4 questions)
Secondly, it’s been a year since I had that scan, and my symptoms have worsened significantly in that time. Though I did have the pain back then also. Is this enough to warrant getting another scan? I am wary of subjecting myself to more radiation.
Lastly, I suppose if it isn’t ES, what else could it be? I am still confident my throat is playing a large role in my pain but am increasingly at a loss for another likely condition. Are there other neck issues that share the same symptoms of ES - primarily the following:
Eye pain and eye floaters
Feeling of lump in throat, difficulty turning head
Whew. Sorry if this is a lot to ask in one post, but also thanks in advance everyone.
First off, let me reiterate what has been so often said: It’s not so much the length of the styloid but the angle at which it is pointing that can cause symptoms (although length also plays a role). It has been a year since your CT scan was taken. Elongated styloids can & often will keep slowly growing if they aren’t removed (removal at the base of the skull is ideal) which causes increased symptoms. There’s a good chance your styloid is longer now than a year ago. A 3D CT scan is not necessary to see the styloid length or angle, but dye is required to see vascular compression.
Posting a picture of your CT scan on this forum will elicit a “We’re not doctors…” response from those in the know. We can only give our opinions regarding styloid length but can’t definitively diagnose you as having ES.
It is my humble opinion that if your symptoms are getting worse, & yes, they sound VERY suspiciously like those produced by ES, you should press whomever you need to in your local medical community to prescribe a “follow-up” CT scan specifically to look at your styloid processes & stylohyoid ligaments. Calcified ligaments, even in the absence of excessive styloid length, can cause ES symptoms.
Fight for a proper diagnosis whether it’s ES or something else. Print off articles about ES. You can find links to good info to take to your next appointment under the HOME tab at the top of the page.
Standing up for yourself when you’re uncertain about the cause of your health problem is hard because doctors tend to assert such a sense of authority. Don’t let them intimidate you. Push your case even if it’s against your nature.
You can do this!!
Totally agree with everything that Isaiah says… and sympathise, because I know how easy it is to get flummoxed by doctors even when you’re prepared. But ultimately no-one else is going to fight for you, so it is the only way. (Is there anyone else who could come with you another time, to give you confidence?)
I would imagine that the CT would have shown enough if it was your head and neck, but as Isaiah says, things can change in a year. It would be good to know how long exactly their estimate was, as doctors use different ‘averages’ as a comparison- anything from 2-4cms! And also if the ligaments were calcified. As Isaiah says, the angle is just as important as length, and there are research papers to prove that. A 3d Ct would give you a bit more idea of what the styloid might be close to, so you could have a go at that using the links to software on here. But again, as Isaiah says, we can’t diagnose you. Your symptoms are typical of ES, especially the lump in the throat and difficulty turning your head, so it’s a real shame that those weren’t listened to.
Ultimately, there isn’t always a definitive way to diagnose ES, it’s a combination of comparing the CT with symptoms. Some doctors do try lignocaine injections into the area, to see if that helps the pain to ‘confirm’ ES, but most don’t.
So best advice is to have a look at the doctors info section, and see if there’s any doctors familiar with ES in your area you could see/ send your CT results to, don’t give up, and keep trying. Some members have spent years seeing different doctors before they’ve been diagnosed and got treatment, so you’re not alone.
There are a few other conditions which cause similar symptoms- in the ES Info section there’s a brief mention of them, so you could google them if you want.
Thank you both, your words have given me the resolve to go back and press my case until I get the basic attention and consideration I deserve.
I’m of course to blame for the way things went today. I’ve had more than enough experience with doctors to know that they almost never go above their pay grade for their patients, especially if it’s not a straightforward case. Ugh, that’s a bitter outlook and I know it’s not true for all of them, sorry. Anyway, I am slowly learning to be more insistent and advocate for myself. Also, I should have come more prepared. I made no effort to read through and print out a lot of the info on this site which would have allowed me to challenge them on some of their opinions. Just reading Isaiah’s comment I am kicking myself about how ill equipped I was.
On more of a venting note, I continue to be stunned at how doctors (again excuse the blanket statement) have so little regard for patients who do not have straightforward, easy to diagnose conditions, despite the pain they are suffering. I have told so many of my past doctors how my pain has basically ruined my life, how I have not been able to do anything for two years because of it, pleading for help… and they just nod their heads and dismiss it as though I told them I’d just got a haircut. I used to think this was just because they were professional and were focused on helping me, but after reading so many accounts of people with rare conditions that don’t even get considered let alone investigated by their doctors (ES being one of them) I’ve come to believe that a lot of them just cover the basics and if you don’t have a textbook problem they pass the buck.
Regarding posting the scans, I am of course not looking to get a professional diagnosis from anybody here, sorry if I gave that impression. I was just wondering whether there are users that can read radiographs with some literacy, in case they could pick up something the doctors missed.
One last thing, until I think of ten more: can doctors outright refuse to request a CT scan if I go back and determinedly ask them? I definitely had that impression today when they told me they already had all the scans they need.
Apologies if this post is incoherent. Iam sleep deprived from having to travel into the city early this morning. Thanks for the help again, everybody.
Oh Wonkly I do hope that you can get some assistance! Half the battle is just speaking to medical professional that believes in you I think. I had my first steroid injection 2 days ago and have my fingers crossed or its surgery for me also. Good luck and I hope you get an understanding doctor on your side
Thank you, and I return the sentiment! What was the purpose of the injection if you don’t mind me asking? I’m unfamiliar with how steroids can treat ES.
It is to relieve the pain around the bone as it hurts a lot. I have been seeing a specialist face, head and neck physio who has helped tremendously with my other symptoms such as ear pain and head pain. (my ear pain was horrific) The only area they cannot assist me with is pain in right side of neck. Basically holding off surgery. I have been told it may or may not work and it may work for a while or it may work for a long time. Otherwise surgery for me. My ES originally came up in CT scan that was for my head a couple of years ago as I was dizzy. I have since had a barium swallow test which really helped out with identifying problem areas such as how it effects my swallow and why yawning hurts so much. I have a great ENT guy. (I am in Australia and fortunate that the speech therapist and my doc are quite interested in es and helping me out) It seems you are having a very hard time getting someone to listen to you. Easy for someone to just nod their heads when they don’t feel the pain I really hope you find that person that finally says - I want to help!
The steroid injections reduce inflammation in the area where you feel pain. They seem to work quite well for some members, but unfortunately are a ‘temporary fix’- there’s a limit to how many you can have, so it doesn’t actually solve that problem of the styloids causing irritation by compressing soft tissues. But it can be useful to manage the pain until you feel you need surgery.
Hi Wonky…I can so totally sympathize with you!!! I have tried for 30+ years to find out why my spine and joints were all breaking down. All I ever got was it’s OA and “you know you’re getting older”. NOW I know it’s RA and ankylosing spondylitis. Made me want to slap the darn doctors. But back to ES. In 2015 my dentist ordered a panorama x-ray and cone beam ct which he sent off to Seattle to be read. That was where calcified & elongated styloid ligaments showed up first. For 2 years after I went to ENT’s who had never heard of it and dismissed me. Last summer I had 2 scans - a ct and a MRI of my throat area and neither mentioned the styloid ligaments, as the radiologist never looked for them. I kept plugging away and calling ENT offices to see if their docs know about ES. Finally late last fall I found a doc who knew immediately, but only does intra-oral surgery. For months we’ve messed around trying to find a surgeon within a few hundred miles from me with no result. I learned about Dr Samji in San Jose and have been accepted by him. As all the pain is getting worse by the month I’m about to resort to paying the big bucks to fly to him. I’m just afraid there’s other things causing more of the pain and he won’t address them. The right side of my head is literally pulled down because the muscles running down from my mastoid bone to my clavicle are SO tight. Injections have not helped, TENS made it worse. I have no idea if this could be connected to ES or if it’s coming from by totally screwed up & inoperable spine and can’t seem to find any answers. Am calling Dr Samji’s office this week and setting up phone appointment as I absolutely can not keep letting things drag on.
All I can say to you Wonky is KEEP PUSHING and don’t give up. Search this site for doctors who are familiar with ES and travel if you must. My best to you and I truly understand your “venting”. I do plenty of it myself. :))
Definitely have vision issues from this. Very hard to deal with
Dear Wonkly, I too had a longer styloid. It was in my left side. I think all of us who are trying to find what is wrong with us, have somewhat the same symptoms, when we describe our pain as feeling like something in our throat poking us.
I was at the end of my rope before I finally got diagnosed with ES. My heart goes out to everyone who is still out there trying to get diagnosed. Technology has progressed allot since I finally was diagnosed and I made the decision to have the surgery. It made all the difference in my life. I was literally dying a slow death.
I do have some difficulty in turning my head, but I think that’s because of a car accident. I also do produce allot of saliva, but it’s not bad. That is all I deal with. Pursue your healing, I did…We know our bodies better than any doctor out there. Hope you find the answer to this ES. My life is much better.
I would definitely suggest surgery. Nothing is more amazing than when you wake up after having those suckeresame shortened up to normal length (in my case 2cm off each side).
Thanks Gina, sounds like you’ve had a rougher trot than me =( Out of curiosity, how did you go from a diagnosis of OA to RA and ankylosing spondylitis (hope I’m getting that right)? I only ask because I have a syrinx on my cervical spine but the surgeons don’t think it’s causing any of my problems. If there are other spinal issues that are easy to miss I’d like to know, in case anything on my MRIs have been overlooked.
Thank you for the inspiring words, all I can do is keep moving forward, though it does seem like I’m shouldering most of the load that should customarily be assumed by the doctors… sigh. Oh well. By the end of this we’ll pretty much be the most knowledgeable people in medicine, and they can all bow down and kiss our overqualified feet.
Do please keep updating your situation on this board, I’ll be checking back regularly. I hope you get the answers and relief you deserve.
Hi Painintheear, I’m happy that you have found Drs that are helping you with your ES. I’m also in Australia and keen to know who your Drs are and where they are located. Would you mind sharing this information? Thank you!