Hey all! I just discovered ES a few days ago after an extensive google search and two years of being sick of whatever’s going on with my throat.
I woke up one day 1.5 years ago (Labor Day, 2017) with what felt like a lump in my throat as well as a sore throat (both on the right side only). My voice sounded and felt different than it had in the past, and I assumed I’d had a reaction to smoke from the intense wildfires that were happening. 6 weeks later, when no improvement occurred, I went to see my first ENT after crying in my GPs office when she literally said “well, what do you want me to do about it?” He scoped me, said there was maybe a bit of swelling, and prescribed Omeprazole for reflux. I went to 6 weeks of very expensive vocal therapy with no improvement.
A few months later, I went to a different ENT who said my cords looked fine, prescribed some prednisone, and sent me on my way. Then, in August, I saw my 3rd, who also said my cords looked great. This one ordered a soft tissue neck CT which he says looks normal (Is soft tissue with contrast the right type of CT? Would he be able to see ES on it if he knew what it was?)
Additionally, in the past 2 years, I’ve developed pain in my right ear. When I press around my right ear (which I’ve started doing almost compulsively to alleviate discomfort- it does not help-) I hear a sort of whooshing sound that is not there on the other side.
Basically, I’m sick of clearing my throat all the time, not being able to sing the way I want to, not being able to talk the way I want to, and having this strange ear pain. Is ES a possibility here? Does anyone know of a doctor within driving distance of Denver that is familiar with ES and will take me seriously? I can’t stand going to another ENT who will tell me to “wait it out” or blame it on menstrual swelling (denying women’s pain and blaming it on their period is hella classy). Help please!
Welcome to our wonderful forum! We’re here for you. Your symptoms do sound suspiciously like ES symptoms, but there are other things that can produce similar symptoms. People w/ ES often get diagnosed w/ & treated for acid reflux before getting an ES diagnosis, & you’ve traveled that road, I see.
Your CT scan would show ES if it covers the area between the occipital portion of your skull & your hyoid bone (which is in the front of your neck just below where your chin & neck meet). You can ask your PCP to have the CT results revisited to look for Eagle Syndrome or at least to have your styloid processes measured & look to see if there is any calcification of the stylohyoid ligaments. The radiologist who interpreted your CT scan most likely complied w/ your ENT’s request & only looked at the soft tissues highlighted by the contrast & paid no attention to other details. If the ENT in question was familiar w/ ES & if the CT is of the correct area of your neck, he should be able to see ES immediately. That said, different doctors have different standards for diagnosing ES. Dr. Samji, who’s probably the most experienced ES surgeon in the US, feels that any styloid process that’s longer than 2.54 cm (1 inch) can be classified as ES. Others won’t diagnose anything shorter than 3+cm. You can see diagnosis can be somewhat subjective. Additionally, some people have normal styloid length but have calcified stylohyoid ligaments which cause the same types of symptoms. Others have both elongated styloids & calcified ligaments.
I totally agree w/ you that the doctor’s blaming your symptoms on your menstrual cycle or some vague excuse of inflammation is pretty sorry. There are a couple of ways some ENTs test for possible ES - prescription lidocaine patches which you put on your neck on the affected side or giving a cortisone or lidocaine shot in the neck in the area of the styloids. If you get even temporary relief from symptoms (we’re talking minutes to days), that can be telling.
Finding a skull-based surgeon in your area (often an ENT) might be helpful in getting a diagnosis as well. That is the sub-specialty that does a lot of surgeries in the area of the neck affected by ES. There are several very good ES surgeons in the US. I think they will all do consults over the phone after you send them your CT scan w/ the diagnostic report. Surgery is the only cure for ES but it does have a high success rate if done by an experienced surgeon.
I’m including 2 links to articles which I hope will be informative for you. There are others in the Newbies Guide. Printing articles to take w/ you to a future appointment is sometimes helpful.
Please keep us in the loop as you have further questions or just need to vent.
Can’t really add anything to that, very good advice! A bit mystified as to the piint of a ‘soft tissue CT’, as CT shows up the bony structures best, MRIs are better for soft tissues, or so I thought, but then I’m not a doctor… Hopefully if you can get it re-examined then it might help, or get a copy of the image & there’s a tutorial on here explaining how to turn the image into 3D if you’re interested.
Omeprazole been there, done that. Your symptoms sound like ES to me as well. I had one ENT look at my CT scan and say “you don’t have Eagle syndrome”. I rescheduled with his colleague a month later and just had a successful operation for ES a week and a half ago. I had something you could feel from the outside and I’m still dumbfounded that the first guy dismissed me. Not all doctors are created equally. Welcome, we’ll help you walk through it either way!
Thanks to ALL of you. It’s so nice to have found a community who gets how frustrating this is. Even if it ends up not being ES, I’m grsteful for all of your kind words! Sounds like we’ve been through a lot of the same crap.
Can you point me towards the tutorial to make my CT into a 3D image? I’m super interested in this and I already have the disc! I basically don’t let doctors do imaging and then not give me a copy.
I also found a doctor here in Denver who sub-specialized in skull base surgery, so I might try to get an appointment with him.
I like the idea of “shopping around” for the right doctor. And I had two scans - one a traditional CT without contrast that the surgeon required and then a 3D one done by an oral surgeon’s office during my stumbling/searching phase. I took tons of pictures of the computer screen at that oral surgeons office (Es was out of his scope but he knew there weren’t supposed to be those two long white lines in my neck) when he was going over it with me. It is the 3D image that really gives you a good look at things. I offered the 3D disc to the surgeon the ended up doing my operation and he said as cool as those images are he preferred the traditional CT. Just some background on CT scans from one person’s experience.
Click on the magnifying glass at the top right of this page & type Tutorial into the search box. A list of tutorials will come up w/ the first one being how to convert your CT into a 3D image.
Thank you ALL again! After messing around with Slicer on my desktop yesterday and not getting it to work, I finally decided to try on my laptop. I guess I have a better graphics card here because I can download and make images with the sample data! Now just to get my scans from the CD to my laptop (doesn’t have a disc drive, ugh).
I know this may sound weird but I think you’ll all know what I mean… I don’t want this disease but I have a tiny glimmer of hope for the first time in at least 6 months and that feels good. If I can figure out what’s wrong with me, I can start figuring out a solution.
Anyone on this forum live in the Denver area? Looks like Vincent Eusterman is an ENT who specializes in skull base surgery at Denver Health. Wondering if anyone has any experience with him or anyone else in my area.
I do not know anyone in CO, but I do know that Dr. John Milligan is in AZ - so fairly close to you. He gets good comments on this site. And he is private practice - so you call and request and appt with him and bring a referral when you arrive. Wait times are long - but you could make appt and cancel if you find someone you feel more comfortable with in CO.
I totally get what you’re saying. When that diagnosis finally comes, you go into “this is what I have, now let’s fix it” mode. It’s a million trillion times better than “I’m never going to get better, I’ll have this condition forever” mode which I circled the drain in for 4 months. No fun. You’ll figure it out. It’s something. You know your body.
Just went back and looked at my records from the last ENT I saw. I was looking for a radiology report, which ISN’T THERE. I have the disc, but there’s no record of what the radiologist saw or didn’t see in my portal. Sheesh, people! They also only recorded one of my symptoms. Talk about getting blown off. Anyways, just needed to vent for a second. On to the next.
No, often you have to specify that you want it evaluated for ES & to check styloid length, angle & whether the ligaments are calcified! You’d think they’d notice bloomin’ great bones, but no, not worth commenting on!!
I started typing up a daily report of what was happening to me beginning last September. I still do it now for post-op recovery and noticed this morning I’m almost at 10,000 words!! In the very beginning I was on about the sixth person (primary doc, dentist, oral surgeon, gastro, local ENT, accupuncturist) and I wrote “I wish someone would just own me”. I wanted someone to be interested and curious about my symptoms. Thanks be to God that day finally came and I’m so grateful I waited for the “right one”. Picking a surgeon is somewhere in between selecting a good watermelon and a mate for life.
Lol! Yeah I called and got the radiology report and they sent it to me… they only looked at the soft tissue so that’s no help. Also asking my dentist if they happen to have panoramic x-rays or me while I wait for another referral from my PCP to the local ENT who specializes in skull base surgery.
Maybe the dental tests will come through for you. I do know when I was at the oral surgeon’s office he made a big deal with the tech to lower the panoramic machine quite a bit to really get the whole neck region. I just measured the distance from the bottom of my scar to my collar bone and it’s only 3 inches. So it really depends on how low the x-ray machine was positioned if it’s ligament calcification that you’re investigating. I guess with the styloid processes themselves being the culprits those might make it into a traditionally placed x-ray. I hope I’m not confusing you or explaining any of this erroneously!!!
You can request or have your PCP request that the CT scan be re-evaluated to look at the styloids & stylohyoid ligaments & take note of the things Jules mentioned assuming they already have the raw data (i.e. if they’re visible in the scan). They just have to look at it again from a different point of view (hard tissues rather than soft tissues).
YIKES! That looks to me like one mighty thick & elongated right styloid process. The length of the styloids is hard to tell from the angle of the picture. The thickness alone can cause problems even if it’s not extraordinarily long. BUT I must make the disclaimer that I’m not a doctor so can’t diagnose. Your left side looks more normal.
I’m a bit surprised that any radiologist would have not taken note of your right styloid even if it wasn’t specifically requested.
Well, I got the radiology notes and they didn’t comment on ANY bony structures, even to say “this looks fine” so I guess I’m not surprised. I’m particularly noticing that the right styloid looks to have a “break” and then restart further down… maybe not an elongated styloid but ligament ossification instead? At any rate, it looks like the ENT I’m going to have to see is booking out into March (ugh, but also typical) so now that I’ve convinced myself I’m not crazy, It’s gonna be some hurry up and wait.
My lovely sister circled what I think is ligament ossification cause I’m inept at technology today. I don’t see any sort of similar structure on the left.