Was it difficult to get diagnosed?

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Hi everyone,

So, I have been having symptoms for years. I could listen them, but it’s basically a book - I’ll list it at the end if that’s interesting. Anyways, I’ve been to so many doctors who just blow me off and no one has been able to tell me what is going on and I’ve never found anything to help. Obviously, it’s been really difficult and depressing suffering so much and wanting so badly to be normal.

Yesterday, I went to the dentist for the first time in a couple of years and had a CBCT done for the first time. He was reviewing my images for awhile and he came in and told me my styloid ligaments were very calcified and basically showed up as bone. I have pictures. Anyways, he then asked about me and I told him a bit of my symptoms and he said I could have Eagle Syndrome and that I should go to an ENT. I live rurally but close to Portland, OR so hoping I can get in with Dr. Andrew Patel who I found here.

I guess I’m just happy to have found you guys and really hopeful that I finally maybe be finding the reason for so much suffering. There’s hope right now but I’m also a bit scared. Really, I don’t know anything about this and not even sure if what the dentist found is significant. I’m low income and not sure how I should proceed. I can’t really live a normal life anymore. :frowning:

things I’ve been told I may have but not confirmed: fibromyalgia, MCAS, vestibular migraines, long covid

Here’s some of my symptoms that I have basically daily if not constantly:

Flushing

Rapid heart rate/pounding heart/palpitations

Muscle pain and weakness

Fullness in ears

Ear pain and sensitivity

Shooting ear pains

Hearing issues

Tinnitus/ears ringing (sometimes)

Jaw pain

Sore throat

Vision issues: blurring, double vision, blacking out

Feeling of pressure behind eyes and in head

Vertigo especially when moving head or lying down or leaning over

Dizziness/lightheadedness -constant

Brain fog

Throbbing Headaches at base of head and behind eyes (intense) - worse lying down/in the morning and when standing up from lying down

Can hear heartbeat in ears with headache

Sharp pains in head and blackout vision

Brain hurts when I jump

Feeling high or drunk

Feeling like I’m going to have a stroke

Neck pain, constant

Pain swallowing when head is turned

Severe fatigue

Random hives

Joint pain and joint popping with pain

Joint crepitus

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Hi @SwampFrolicker!

Welcome to our forum! Thank you for sharing your story & a list of your symptoms. Up front, I’ll tell you that Dr. Patel isn’t the best doctor for you to see. Your symptoms strongly suggest you have vascular compression associated with your elongated styloids. The most common scenario is the internal jugular veins IJVs) become squashed between the styloids & the transverse process of the C1 vertebra up close to the skull base. Sometimes soft tissues also contribute to IJV compression i.e. another vein/artery, nerve, muscle, lymph nodes, scar tissue or tight fascia. The internal carotid artery (ICA) is another vessel that can become irritated or squashed by the styloids but it usually happens lower in the neck than IJV compression.

Your IJVs drain deoxygenated blood & toxins from your brain, & the ICAs take freshly oxygenated blood into your brain. When blood can’t flow out through the IJVs as fast as the ICAs are taking blood in, intracranial hypertension occurs i.e. high pressure in the brain. It’s that pressure that causes headaches, brain fog, dizziness/light-headedness, vertigo, pressure behind your eyes & in your head & visual changes. There are only a few doctors in the US who do both ES & IJV decompression surgeries & unfortunately, none of them are close to you. If you have Medicaid insurance, I believe that some of them accept that so you’d at least be able to see someone who’s qualified to help give you good surgical results. Getting an official diagnosis from a local doctor would be a good idea, but I would not elect to have surgery with any of the doctors in OR with the symptoms you have. Dr. Osborne, in Los Angeles, has one of the lowest prices we know of for an initial consult - $250 - plus he books consults pretty quickly so there isn’t a long wait to talk to him. He does telehealth consults so you wouldn’t have to travel & also has no expectation that he would be the one to do your surgery.

•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical Osborne Head & Neck Institute, Los Angeles, California. His website is OHNI.org

Further justification for my suggestion that you may have IJV compression is the pain at your skull base (occipital pain) which can be caused by collateral veins that develop when the IJVs aren’t working at full capacity. The collateral veins are “helper veins” that attempt to increase the rate of blood flow out of the brain. Because they’re doing a job they weren’t meant to do, pain results.

Pulsatile tinnitus & hearing reduction/loss are other symptoms of IJV compression as well. The shooting ear pain is more likely caused by an irritated nerve - maybe the trigeminal or glossopharyngeal nerve. Jaw pain is most likely coming from your trigeminal or facial nerve.

Have you ever been diagnosed with hypermobility or Ehlers Danlos Syndrome (EDS)? We have quite a few members w/ hypermobile EDS who have many of the symptoms you have & most of them also have MCAS. Muscle pain, weakness, fatigue can all go along w/ vascular compression, too.

I’ve fixed your account so you can upload your CBCT scan now. Our software doesn’t allow a member to upload imaging until after at least one post has been made. It’s a spam blocking device, I think.

Doctors to consider though some are booked out a ways:
•Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com

•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 Works with Dr Heller now to do C1 shaves

•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, https://www.neurosurgeonsofnewjersey.com/james-k-liu

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

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Wow, this is so incredibly informative. I cannot thank you enough for this. I have considered having multiple things, but so far I haven’t been officially diagnosed with anything after what I think is a lot of diagnostics including an MRI of my brain and cervical spine with and without contrast to rule out MS. I have pretty good insurance through my work right now and I’m thankful for that. I will post the picture of the CBCT in case it shows anything someone may know more about. I am so glad I found this forum.Thank you, thank you!!! The dentist also thought something about my ear cavity looked off. I also happen to have a visit with a primary care provider tomorrow - should I ask for the CT of the area between skull base & hyoid bone with contrast? @Isaiah_40_31

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I’ve never seen CBCT imaging that looks like what you posted. I’m assuming the long sort of pointy things in the picture are your styloids but I can’t be sure.

Yes, by all means ask your PCP for a referral for a CT with contrast & add you’d like it done dynamically or head in different positions - L/R & looking up/down - as that will show in which head positions your compression is worse. If you can’t get a dynamic CT just getting one w/ contrast is next best.

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@Isaiah_40_31 thank you!! I am going to ask for that! Yeah, it’s weird looking, I believe it is a crossection of my head and the parts sticking out are the calcified stylohyoid ligaments. The black holes would be my ear cavity (not sure if that is the right word).

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I hope your PCP is cooperative! Dr. Patel’s modus operandi is to have his patients w/ “possible ES” get an injection of lidocaine + cortisone in the tonsil area of their throat to see if that makes symptoms subside. If the symptoms do reduce, then he diagnoses ES if they don’t then he doesn’t. We know from years of experience on our forum that, that type of injection helps some people, does nothing for others, & makes symptoms worse in still others so it’s not a great diagnostic tool for ES.

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That is really helpful to know!! Thank you @Isaiah_40_31 for all of your help so far.

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I had IJV compression and can really relate to many of your symptoms! I hope that you’re able to get a CT with contrast from your PCP, and can then get an official diagnosis!

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Thank you so much for your response! :slight_smile: @Jules

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@SwampFrolicker in addition to @Isaiah_40_31 recommendations if your PCP is very supportive and open to AI assistance, as mine is, when you ask for the CTA/CTV, CPT code 70471, which changed on 1/1/26 to be a joint head/neck image, ask that they please include arterial and delayed venous phase imaging for assessment of vertebral arterial anatomy and venous outflow.

When I went in for my updated imaging a couple of weeks ago, the tech said, “We don’t usually get such good instructions, we usually have to guess what the doctor is looking at.” That stuck with me because the more specific the order is, the better chance the imaging is tailored to what actually needs to be evaluated.

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@Isaiah_40_31 @Jules

@MGORNEAU That is really helpful information. I will add it to the list of what I have learned here so far!!! Thank you so much.

Unfortunately, I went to establish with a primary care today (I have only had a naturopath since I moved two years ago) and I left crying because clinician completely blew me off. Doctors don’t often listen to me or hear me out, but I’ve never had an experience like this. I left feeling so stupid and small. She told me she wouldn’t order the CT scan because if I keep getting imagining done (I had an MRI in 2025 as ordered by a neurologist) that I would get cancer. Also, said she didn’t have the time to go over all of the symptoms I’ve been having and to pick a couple to discuss. That’s not the first time I’ve heard that, and it never makes sense to me, because it’s the bigger picture that seems to matter here. She immediately came in and told me she didn’t have time for me and would not hear me out, and patronized me for not following up with the neurologist (I was kind of left at a dead end there).

Anyways, I’m feeling so discouraged again with going to doctors. It’s hard to go to so many and not get answers - I finally worked up the courage to find a primary care hoping I would have someone to help me figure this all out and now I don’t want to go see anymore doctors, at all. I’m sure you guys can relate to how discouraging it can be to suffer from a chronic illness but be undiagnosed and not taken seriously. It’s so incredibly depressing. I’m only 28 and it feels like if I keep falling apart at this rate.. I don’t know.. it’s just scary to think how things might be in 10 years from now. I cry all the time because I don’t feel good and can’t live how I use to be able to.

I feel like I’m closer now to figuring this out, even though the doctor completely shut me down on Eagle Syndrome but I know I should keep trying. @Isaiah_40_31 you said I shouldn’t go to Dr. Patel but he is the closest one to me - would it be a good idea to go to him just to get imaging done and talk about options? Then if I need surgery I could go to someone else?

Thanks everyone, again, I’ve never had anyone listen to me and help me that way you all already have.

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@SwampFrolicker I am so sorry you were treated that way. Sadly, many of us here understand exactly how crushing it feels to finally work up the courage to ask for help, only to be dismissed before you are even heard.

You are not stupid, and you are not small. What happened says more about that clinician than it does about you.

The “pick a couple symptoms” approach is so frustrating with something like Eagle Syndrome because the bigger picture absolutely does matter. The pattern of symptoms, imaging, anatomy, and what worsens or improves things is often where the clues are.

I personally would not let one dismissive appointment stop you from pursuing answers. If Dr. Patel is the closest option and could at least help get proper imaging ordered, that may be a reasonable next step, even if you later choose a different surgeon for treatment. Sometimes the first goal is simply getting the right imaging and documentation in place.

Please do not give up because of this one appointment. So many of us were dismissed for years before someone finally looked at the right thing. You deserve to be heard, and you deserve answers. I feel your pain and wish I could make it go away, but please don’t let this appointment be the end of the road. Keep advocating. You deserve answers, and you deserve someone who will actually listen.

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@MGORNEAU you have no idea how much I needed to hear that. Thank you. It’s really empowering to hear it from someone who has been through it. Most people don’t get the frustration that comes with all of this, stemming from the very people you believe are there to help. I know they aren’t all bad, but dang. Thank you again for the guidance and pep talk.

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@SwampFrolicker It took me six years of searching, and about ten years of symptoms, to finally get real answers. The difference is, you have this group now, and I did not have that until after diagnosis.

There are providers who will help, but sometimes it requires stepping outside the usual box, which takes effort. It is worth it though. Please keep advocating. The right imaging and the right doctor can change everything. And for those of us who know life is not really life without critters, well, we really get what matters in life :yellow_heart:

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@MGORNEAU I’m so sorry to hear you went through it for so long :frowning: did you find what worked for you to help you feel better? I wish you’d had this group sooner.

I’m so glad to have found you all. No matter what comes out of all this, it’s so nice to talk to people who really understand the battles and I’m sure I will learn how to better advocate for myself. It’s hard not to complete my break down sometimes.

By critters, if you mean our animals, I could not agree more!! My animals really get me through it and bring me back to earth when it all feels too much. Animals are so so wonderful.

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@SwampFrolicker yes I mean our animals and the wild ones too! :slight_smile: Cannot imagine life would be worth while without them :heart: I am really sorry this has affected you so young, I cannot imagine having to navigate this at your age but you have found this group and we will do our best to support you in finding the right provider to help you.

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@MGORNEAU and the wild ones too!! Yes!!! Thank you for all the kind words <3

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@SwampFrolicker - Yes to going to see Dr. Patel as @MGORNEAU also agreed that makes sense. I think he’d at least order the correct imaging for you. It would be great if he’d order the CPT code that MGORNEAU suggested. That might be a stretch though, so be willing to compromise with just a CT w/ contrast if he says no to your more specific request.

I’m also an animal lover & grew up w/ a mom who’d wanted to be a veterinarian, but was forbidden to do so by her parents. We had more fuzzy, furry, scaly & feathered critters in our house when I was growing up than anyone I’ve ever known. Unfortunately, I married a guy who’s allergic to many of the critters we had in my youth. Thankfully he’s a keeper :wink:, even if I’ve had to give up having a menagerie of pets.

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@Isaiah_40_31 thank you, that is exactly what I am going to do then and I will see how it goes. I appreciate all of your help so much.

I’m surprised your mom’s parents wouldn’t let her become a veterinarian, that is a wonderful - but tough - career. My dad is a veterinarian so I am with you on that! Sounds like quite an exciting household to grow up in :slight_smile: glad you found a guy that was worth the trade off!! <3

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@SwampFrolicker - LUCKY YOU!!

My mom was an only child & her parents were older when she was born in 1931. They were very traditional, & when she was in college & hoping to start working on pre-vet courses, they made her get her degree in economics instead because it was a “practical subject” for a wife & mother as they anticipated those would be her true careers. Needless to say, she was bored out of her mind & hated her last couple of years of college. She did marry a doctor though. :joy:

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