Conflicting diagnoses. Seeking advise. Pics included

[LA1379]

Hello everyone. I’m new here. I’ve spent my free time exploring this site today and I’m so relieved to have found this community. The information shared here has already been a blessing to me! Thank you! Here’s a little bit about me and some snapshots from my scans. Your advise is greatly appreciated.

My symptoms are:

• Starting in Feb 2025 - daily constant pain on both sides in the deepest part of my throat in the general area where my tonsils would be (removed as child). When I touch this area with my fingers, it feels hard like a contracted muscle that won’t relax. (OMF doc agreed there is “banding” there but said no ES showing on Xray). This is the place I feel the worst amount of pain. On a good day, the pain is equivalent to a headache. On a bad day, it escalates to migraine level. I get nauseous and have to lay down for the rest of the day. Incidentally, this typically happens in the afternoon/evening hours. I’ve deduced that eating and talking seem to exacerbate the pain.
• Tongue tingles and feels like a tired muscle that doesn’t want to do it’s job. I can pass all the tests the specialists give me regarding tongue movement, it’s just a lot of work!
• Constant ache at the base of skull.
• Tightness/pulling sensation when turning head to left/right.
• Tenderness from the join under my ear to the middle of my throat. The pain has never been in my face or below my voice box.
• Talking takes effort and my voice becomes strained but I never loose it. Its become my new normal so my husband doesn’t hear the strain but I feel it and hear it after prolonged conversation (which I try hard to avoid now bc I’ve deduced that I will suffer more if I talk too much).
• Sometimes it feels like I’m swallowing glass or sandpaper. This sensation is worse if I try to go off the pregabalin.
• Initially, it felt like there was something stuck in my throat but this isn’t as bad lately.
• Tinnitus
• One of things that confuses me and everyone else who hears my story, including my docs, is that although my symptoms are present all day/ every day, there are times when it’s manageable and other times when it’s so debilitating I’m on my knees asking the Lord to please just take me. I can exercise, go on long bike rides with a helmet on, and work but then there are days when the pain gets so bad I cannot do anything but lay down and beg for mercy. My husband and I have become obsessed with trying to find out what triggers these really bad days but after 18 months of this, we’re absolutely sure there’s no pattern of behavior that we can find to explain why the pain ebbs and flows.

The symptoms above are the ones I have had all day/ every day for the past 18 months . The only thing that varies is the severity. But I feel it is pertinent to emphasize the timeline and the way in which my symptoms got to this point. This actually all started in 2020!

• 2020 - odd pain only in left part of my neck where my adam’s apple is located. I thought perhaps I strained myself exercising so I took a few days off and dismissed it. The sensation returned sporadically without too much interruption to my life throughout the year. No other symptoms that I recall during this year.

• 2021 - left internal carotid artery dissection that led to TIA due to lifting heavy at the gym. I was given heparin and experienced a full and complete miraculous recovery! After the dissection healed, docs could see that I had Fibromuscular Dysplasia in both ICAs. Life moved on and believe it or not, this is a non-issue for me now (Praise the LORD!). Incidentally, all of my specialists have said my FMD is unrelated to my present pain. It does seem suspicious considering the location of my current symptoms, but I have been assured that all my arteries are super healthy, blood flow is fabulous, and there’s no aneurysm or stenosis found anywhere.

• 2022 throughout 2023 - The familiar sensation that appeared in 2020 returns but with more frequency. I have vivid memories of talking all day at work, singing at church, or having prolonged conversation while eating with friends where it felt like I had to work to talk, my tongue was tired, and there was a tightening/pulling sensation in my neck/throat. It was mild and always went away but would come back and go away again so I never sought help.

• 2024 - February I complained to my PCP for the first time. She gave me meds for acid reflux. We thought it worked but this was back when my symptoms were coming and going on their own. Looking back, we now know that I never had reflux.

• 2024 - August, I complain again. Referred for TMJ symptoms to no avail. Again, my symptoms go away on their own.

• Jan/Feb 2025 - Life as I knew it, was over. My pain skyrocketed and now presented on both sides of the neck, up the back of my mouth to my tonsillar area, and involved my tongue. B/c of my history with ICA, I went to ER. I was cleared and sent home with Tylenol.

• Every body part has been scanned and all kinds of specialists have run tests and I’m just as bad as ever. I actually got my diagnosis for ES almost right away from Dr. Todd Fowler in TN. But I got two 2nd opinions (1 from Dr. John Delgaudio and the other from Dr. Mark Ellis). Both of them said no ES so that put me the path to nowhere. I’ve seen neuro, GI, rheumatology, and everyone in between to no avail. Here I am, 18 months later with no formal treatment plan and no real help.

Thanks for taking the time read my story. I appreciate your advise.

[MGORNEAU]

@LA1379 I obviously can’t diagnose not a doctor and from screenshots, but I did run these past ChatGPT as a second set of eyes, and it also did not see this as “nothing.” The styloids look elongated, and on the left C1 area there appears to be a possible significant ponticulus posticus/arcuate foramen. I would want another second opinion or two or three! @Isaiah_40_31 @Jules may be able to recommend the best options in you area.

[LA1379]

Thanks for taking the time to read my story and offer some suggestions. Are these images sufficient do you think? I’m not even sure if I can find my styloid process in the 3D images. I have had many scans so I just pulled a few screenshots from my most recent CT angiogram. I didn’t know the best angles to use or screenshots to capture.

I was blown away by the way my hyoid bone appears to be resting on my ICA. It shows up on the black and white images too. I gasped bc that’s where my pain first began! I can’t even make sense of what I’m seeing there.

[Isaiah_40_31]

Hi LA1379!

ES is notorious for having symptoms that come & go, are tolerable for a while then intolerable. It’s like an odd sort of pain pendulum that swings back & forth seemingly w/o rhyme or reason as you noted.

I’m so sorry for the run around you’ve gotten from your doctors. Good call on seeing that your right internal carotid artery (ICA) is being squashed by the right greater horn of your hyoid bone. With the way your left one looks, I suspect the same thing may be happening on the left side even though it doesn’t look like it in the picture you posted.

In the image below, you can see how your left ICA has a similar bulge at the carotid bifurcation as the right one has. That’s what leads me to think it may also be getting squashed by something if it’s not the left greater hyoid horn. Also on the left it appears your internal jugular vein (IJV) is slightly compressed, possibly by C1 & C2, but the picture isn’t clear enough for me to tell for sure. The right one may also be compressed by C1, but I can’t see enough of the IJV to tell, & again, the image isn’t clear enough for me to be certain. A common scenario is for the IJV to become squashed between the styloid & C1 vertebra.

Your styloids look like they may be slightly longer than normal, however, just below each one, your stylohyoid ligament has calcified which in effect is equal to styloid elongation as that extra calcification can compress nerves & vascular tissues, too.

Lastly, as @MGORNEAU, suggested, you may have ponticulus posticus AKA arcuate foramen which is deformity of the C1 vertebra in the area of the transverse processes. I’m unsure that what I’ve circled in the image below shows that, & because your the transverse processes of your C1 vertebra in the sagittal images was blurry, I couldn’t tell whether you have it or not. It’s a situation that can cause symptoms but doesn’t always.

Bottom line here is that you have been consistently misdiagnosed, & I’m glad you’ve continued to search for answers. I’m not a doctor, but based on the pictures you’ve posted, I’d say you have both Hyoid Bone Syndrome (HBS) & ES w/ bilateral ICA compression, & possibly slight IJV compression being caused by your C1 vertebra though that may be insignificant as far as your symptoms are concerned. I think getting your hyoid horns shortened so they don’t touch your ICAs plus getting your styloids cut as close to skull base as possible & having the s-h ligament calcifications removed will go far toward helping alleviate your symptoms.

Dr. Hackman in Chapel Hill, NC, is the doctor closest to you who does both of those surgeries. Dr. Dewan in LA is the closest doctor to you who does surgery for Hyoid Bone Syndrome but not for ES.

•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484

•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries, 1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050

Karuna Dewan, MD

I hope this information is helpful for you.

[Jules]

Hi and welcome to the site!
As usual @Isaiah_40_31 has been very thorough and helpful with labelling the images, and @MGORNEAU too, so there’s not much left for me to say! I agree with your styloid processes and then the calcified ligaments below these are potentially long enough and angled too so could well be causing symptoms. And given that you’ve already had issues with your carotid arteries it is concerning that your hyoid bone processes are that close… It is strange that ES symptoms can come and go, but has been noticed many times before- as you say talking commonly aggravates symptoms, and chewing/ eating too, as well as posture, looking down at a computer too. The weather can affect ES with barometric changes, for women hormones can cause symptoms, they can flare if you become ill with anything else, like a virus etc. Cycling for me caused vascular symptoms, I think being hunched over the handlebars affected my neck… But often there is no obvious reason!
I think that you would be best to see an experienced doctor, as @Isaiah_40_31 has mentioned, even if you have to travel. Dr Cognetti in PA would also be a goof bet as he treats VES and also the hyoid I believe.
Best wishes and God bless, amazing how He’s got you through the ICA dissection

[LA1379]

Thank you all for your comments! I had to take a few days before replying back b/c I had quite an emotional response and needed a few days to process. I finally feel like I’m not going crazy. I have already started making calls to docs.

Since some of my screenshots were blurry, would it help if I upload my files to DICOM library or is there a whole other way I can post better quality pics than a screenshot? I’m desperate to nail down more details so I can better advocate for myself.

Also, this feels like a dumb question but when I look at the images, are they mirror images? So left on screen is left on my body? The reason I’m asking is bc my pains are worse on the left and that’s where the pains first started. Is the hyoid bone squashing the left or right ICA as I feel it (on my body)?

I’m beyond upset about what we found regarding my hyoid bone/ICA. When the docs ask where does it hurt, the first place I point to is that spot on my neck. That’s where it all started! More than 5 different specialists have looked at this CTA! I even have 1 single doc whose sole responsibility is to look after my ICA (my fibromuscular dysplasia doc). He scans me every. single. year just to check my ICAs. He’s the one that sent me to Dr. Delgaudio at Emory who refused to see me after taking one quick look at my scans and declared I don’t have ES.

Thanks again everyone. I appreciate more than words can say. May God bless you!

[Isaiah_40_31]

@LA1379

@LA1379

Since some of my screenshots were blurry, would it help if I upload my files to DICOM library or is there a whole other way I can post better quality pics than a screenshot?

I found dicomlibrary to be difficult to navigate once my images were put into 3D so you might want to try either radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs) to convert your CT images into 3D.

@LA1379

Also, this feels like a dumb question but when I look at the images, are they mirror images? So left on screen is left on my body?

Not a dumb question at all. Until you’ve seen enough images it can be confusing to know which side is which. Pictures you post that are looking at the front of your body are reversed i.e. left is right & right is left. Pictures from behind your body are in correct order i.e. left is left & right is right.

It’s interesting that your symptoms are worse on the left when it’s the right that looks worse in the pictures you posted, however, I did note that your left ICA is also distended/engorged at the carotid bifurcation so perhaps w/ your head in a slightly different position, the left ICA is suffering more than the right side. Regardless, the greater horns of your hyoid will need to be shortened to stop the ICA compression. ICA compression is painful whereas IJV compression itself is not, but the symptoms both can cause are.

Clearly God has led you down the path you’ve taken so that you’d find our forum & get some guidance regarding doctors who have the proper experience & knowledge to help you.