I posted a previous post (I apologize I’m really bad about responding to things with my ADHD) about how I had a chiropractor say that I might have some calcification of my stylohyoid ligament. I went to my general Dr about a month ago and asked him if we could do a CT scan. He doesn’t know much about eagles but he had heard of it before so he ordered a scan. He texted me last week saying that the CT showed “some ossification along the stylohyoid ligament which may support eagles” and that we could discuss it during my followup appointment next week.
My guess is that since my Dr really doesn’t have any experience with this particular disorder that he wouldn’t know what the next steps are for looking into it further and I’m not really sure myself. I’m in Utah so I think there are limited Dr’s with knowledge of the disorder. So what should I do next? I’m not sure how to tell if my issues I have been having are caused by eagles or not (more info on my symptoms below). Do I ask for a referral to someone in Utah and if so how do I find out who? Can I send my CT scan to a Dr with experience with eagles and have them look at it to see if it is something I should pursue further? I’m wondering if it is better to go to a specialist in an adjacent state. Any advice on next steps? I have a lot of fatigue from the ridiculous amounts of appointments I have had the last 8 months trying to figure out what is wrong with me and get relief and I’m starting to loose steam so I could really use some guidance.
Regarding my CT scan, I haven’t actually seen it and so I’m not sure if it’s ossification or calcification and my guess is that it isn’t completely calcified. I’m guessing this because I have a photo of an X-ray from my chiropractor and the calcification he pointed out in it looks really thin (although I am a small person). I also had a TMJ consultation about 3 weeks ago and the dentist was convinced I had some TMJ issues and in whatever sort of scan he took he said “ya there’s a little calcification but you don’t have eagles”.
I’ve been having an incredibly difficult 7+ months with daily chronic pain in my neck and chronic migraines. I’ve been doing physical therapy for 3+ months without much in the way of improvements. I have constantly tight muscles throughout my neck, shoulders, temples, and face. I’ve been dealing with the muscle tension and headaches for years but the last 7 months have been really bad to the point that I wasn’t functioning at all. I’ve gotten a little better where I’m not having daily headaches like I was for a good portion of that time but it’s still interfering with my daily life making it difficult to work and socialize. I also have tinnitus, a sort throat that comes and goes when I don’t seem to be sick (looked into it about 3 years ago and was told nothing was wrong), and vision that seems to vary from day to day. During the previous 7+ months I was suffering from a lot of other symptoms like extreme fatigue, lightheadedness, low-blood pressure, lack of appetite and constant feelings of nausea, increased anxiety/depression, feeling extremely on edge and easily startled, and swollen lymph nodes that won’t go away (I still have those and it’s been well over 8 months) among other things I can’t remember at the moment (I had a really long list I brought my Dr). I did have mono antibodies show up on one test so most of those symptoms were probably from mono (I got unlucky and had severe fatigue for over 6 months) but I don’t know. I suppose all my issues could also be caused by tight muscle issues or TMJ but I’m not 100% convinced of that because I don’t have jaw pain (although the muscles are really sore if I put pressure on them) and I’ve had many of the symptoms for a lot longer than the dentist thinks I might have had TMJ (he thinks it might have been caused by my invisalign I got off the start of this year which kind of lines up with some of my timeline on increased pain but not the issues I’ve been dealing with for longer). I’ve looked into so many things and tried all sorts of things to relieve my pain but no luck yet. I just want relief.
Calcification & ossification are two words for the same thing. they both describe the process a ligament or other soft tissue undergoes to become like bone. First thing you need to do is get your own copy of the CT scan on a CD. It’s important for you to have 1-2 copies in case you need to send one off to a doctors office.
Your next step would be asking your PCP for a referral to
Because your symptoms indicate you may have vascular ES i.e. headaches, tinnitus, visual changes…it would be smart to make an appt. w/ Dr. Hepworth in Denver, CO. Unfortunately, Dr. Hepworth is booked out quite far so if you plan to see him, you should get an appt. ASAP & ask to be put on his cancellation list. His office does require a referral from your PCP or another doctor.
TMJ diagnoses are common for people w/ ES so I wouldn’t pursue anything w/ that until your calcified ligament is removed as any related symptoms will likely go away. It sounds like your vagus, trigeminal, maybe facial, glossopharyngeal & accessory nerves are all being irritated by the calcified ligament so I believe you do have ES. I’ve included links to 2 extensive posts made by Jules which list symptoms & their causes. You may want to read them a bit at a time because they are long but will answer many of your questions about symptoms.
So sorry that you’re in alot of pain & have had symptoms for a long while…it does sound as if it’s worth seeing a doctor with ES experience & looking into this as many of your symptoms could be attributed to ES, so I agree with @Isaiah_40_31 . Let us know how you get on with your GP? PCP appt!
Thank you for the detailed advice! I"ll talk to my doctor and see what he thinks. I have a feeling things may be a little slow moving getting started (my guess is my doctor will say let’s wait a little bit and see if the TMS is the issue) but I’ll mention your advice and see what he says. I have an appointment today with him. I’ll also reach out to the place that did my scan and see if I can get a copy or two of it.
So as an update I went to my Dr’s appointment and while we mostly talked about next step for my migraines and neck pain we talked a little bit about my CT scans. I still haven’t seen them and he was having a hard time pulling up the images on his laptop but the report from the CT scan was “There are intermittent small calcifications seen within the stylohyoid ligament without significant enlargement of the styloid processes.”.
He asked what I wanted to do with that information and I mentioned that what I’ve read is that it’s best to seek out a specialist who has experience on the subject. I mentioned that I had heard of Dr Marshall Smith and he kind of laughed because he said when he was in residency he had worked with Dr Smith and that the guy is really talented but that he’s getting on in year. He said he would send a referral but he didn’t sound that confident that anything would come of it.
I guess I’m not confident that ES is the right diagnosis for my issues. The way the CT scan report was worded it sounds like my calcification isn’t that bad but then again, the stories on here make it sound like that doesn’t necessarily matter because you can still have symptoms if the calcification is hitting the wrong spots in your neck. I kind of feel like the referral my Dr sent won’t go anywhere and I have a hard time advocating for myself. My Dr is super kind but I worry that if that referral goes nowhere I’ll end up just not pushing any further because it sounds like my next best option would be the Dr in Colorado and I feel like my Dr would push back a little bit on that (more to try and save me expenses and time especially if ES isn’t causing my issues). I honestly also feel a little bit embarrassed pushing too hard into looking into this when my issues could be run-of-the mill migraines or TMJ.
I’m also wondering if my symptoms could be caused by my thyroid starting to fail. I have Hashimotos (my dad has it) and the last few years all my thyroid tests have been normal aside from a ridiculously high antibody count (normal range 0-10, my last test was 590). They don’t intervene until your thyroid actually begins to stop working so we’ve just been watching it for the last 2-3 years but my Dr did notice that my last TSH test from January was 4.04 which is still considered normal but starting to get to the high end of the range. He had me retested yesterday so still waiting on my results but I looked back at TSH tests from the last few years and my TSH levels were in the 1 and 2 range so does seem like something is changing there.
I’m so sorry that you feel unsure about whether ES is an issue or not, & that the thyroid is a worry too…any calcifications on the ligaments can potentially compress or irritate blood vessels or nerves, so it doesn’t matter that the styloids aren’t large, as you say you’ve read on here. There is advice here about advocating for yourself, maybe you might find that helpful, here’s a link: Latest Patient Self Advocacy/How to Self-advocate and Be Heard topics - Living with Eagle
If you don’t hear anything from Dr Smith would sending your scans to one of the doctors who does phone consults be an option? (Like Dr Samji or Dr Cognetti) At least then you’d get an experienced doctor’s take on whether the calcifications are enough to cause symptoms…
I hope that you can get your blood tests back soon & get medication for your thyroid
I think sending it to one of the doctors who does phone consults could be an option. Is there another thread somewhere that has the process documented of how I would go about setting up one of those consults assuming I don’t hear anything back from Dr Smith?
I’m kind of embarrassed that at 28 I have such a hard time figuring out how to do things like advocate for myself and figuring out how to setup certain appointments but kind of one of those things that overwhelms me a bit (I’ve struggled with anxiety probably my entire life and while I can advocate no problem for other people, when it comes to myself I have a hard time, especially this last year where my anxiety went through the roof with all my medical issues).
You’ve got no reason to be embarrassed about the remote appointment process or not being a good self-advocate. Those things come w/ practice. I’m like you as far as self-advocating goes (I’m twice your age), but I’m getting better at it.
I second everything @Jules said about the calcifications being potential trouble causers & based on your post, it seems you understand they could be as well. Getting a second opinion from a knowledgeable ES surgeon is the best way to go.
To make a video appointment w/ Dr. Samji or Dr. Cognetti, you’ll need to call or email their offices & request an appointment. They will tell you to send a copy of your CT scan & the written report for the doctor to review. If either of those doctors determines that your scan shows something they feel noteworthy, you’ll get a call or an email offering you an appointment. Dr. Samji’s appointments cost abt $500 for 45 min. I’m not sure what Dr. Cognetti is charging. Many health insurance plans will pay all or part of a second opinion consult so check with yours ahead so you know if you have coverage.