Newbie here - seeking thoughts and opinions

[PeanutsMom]

Hi all. I’d like to start by acknowledging what an incredible community has been built here. It is inspiring and faith-restoring to witness the kindness, camaraderie and support you all provide to one another. With that said, thank you for welcoming me. I am a 40 yo woman from the US on a confusing and complex health journey. Since roughly 2017, I began experiencing multiple inner ear issues (as in fluctuating tinnitus, ear fullness, intermittent dizziness, and muffling). After much testing, no conclusive diagnosis was determined but several ENTs have a “working dx” of Menieres. I have no family history of it however, and did not have success quelling symptoms with the dietary changes that are recommended for it. Within the next 4 years I endured multiple acute vertigo attacks that led to hospitalization. Each time I was either turning my head and/or chewing. I was also menstruating each time, which I bring up because I am curious about blood flow to my brain (or lack thereof) which caused TIA-like episodes. Alas, the doctors were unable to pinpoint the culprit. Fast forward a few years I sought the opinion of a speciality dentist for TMD symptoms (pain upon palpating, clicking, soreness, etc). Upon obtaining a CBCT scan, the dentist felt confidently that my styloids appeared elongated. As a result, I contacted my ENT who then ordered a CT which I will post below. Apparently my styloids fall within the upper limits of what is considered “typical” but I’m not convinced they aren’t causing vascular compression. (Also unsure about my hyoid as I can actually feel the horn through the front side of my neck, but she did not address this.) I say this because I have many symptoms of POTS as well (tachycardia, lightheadedness upon standing, exercise intolerance, brain fog). I also just underwent an EKG with a cardiologist who detected poor R wave progression which can be suggestive of ischemia (more testing to follow). Anyway, I will recap my symptoms below and would be most grateful to hear what you all think. I am considering contacting one of the doctors you all have identified for a consult but I don’t want to waste anyone’s time either. Thank you all in advance for taking the time to read this and share any input you may have.

Symptoms:

• Vascular: lightheadedness upon standing, tachycardia, brain fog/memory difficulties, difficulty regulating temperature, significant spike in heart rate when tilting head up and to the left
• Vestibular sensitivity
• Difficulty taking full breath/air hunger
• Chronic tinnitus (sometimes multi-tonal, not pulsatile) in left ear, fluctuating in right
• Mod-Severe hearing loss (within last 2 years) on left side
• Pain upon palpation around TMJ, clicking
• Difficulty projecting voice/sore larynx
• Mild pain behind left eye, difficulty tracking when reading

Also: treatments I’ve tried: meds, PT, intratympanic injections, dry needling, acupuncture, diet/lifestyle changes

Thank you and very best wishes to all of you on your health and healing journeys.

[PeanutsMom]

I knew I’d forget to include something - and of course it’s one of the most prominent symptoms - chronic neck tension, muscular tension/soreness in occipital area, trapezius, collarbones/thoracic area

[lsheep]

Welcome @PeanutsMom ! I am so sorry you have been dealing with all these symptoms for so long! There are so many great people here that share so much valuable information. Please never feel like you are wasting a doctors time trying to get answers! Even if your styloids are in the “upper limits” the shape, curvature, thickness etc can still cause symptoms.

[PeanutsMom]

Thank you so much for your reply! Yes, that’s exactly what I’m wondering. Appreciate your kind words

[MGORNEAU]

those styloids look like an issue to me!

[MGORNEAU]

and AI agrees, don’t let this be dismissed as a cause!

[JGont]

Hello @PeanutsMom, I am sorry that you are going through all of this. I have many of the same issues as you do and have also started down the diagnostic journey after trying different treatments for 3 years. I would encourage you to reach out to one of the doctors on the list (I am seeing Dr. Hepworth) as I have already learned a lot more in a very small amount of time. Knowing very little as I do right now, I can only comment that your styloids look like they could be an issue. Hope you find some symptom relief shortly, the only thing that seems to help me is a massage therapist who works on SCM and TMJ muscles.

[PeanutsMom]

Thank you so much @JGont and @MGORNEAU! I sincerely appreciate your comments.

[Isaiah_40_31]

@PeanutsMom - Welcome to our forum! As the others have said your styloid (Right) but calcified stylohyoid ligament (Left) appear to be significant. The right side is quite thick & curved, & the left bit of calcified stylohyoid ligament is thin but in a location where it’s likely contributing to your symptoms.

My story re: Meniere’s Disease - I was diagnosed w/ MD in 2015 after a head injury from a cycling accident. I did the diet thing & took a diuretic for years as well as Prednisone to combat the symptoms flares (roaring tinnitus, vertigo, brain fog, hearing loss). Mine was also in the left ear (most common ear to get MD, interestingly). I was between my two initial styloidectomies when I was diagnosed w/ MD, & even though I was on this forum, it never occurred to me that my cycling accident had shifted things in my neck to cause IJV compression, but I later found out my C1 vertebra had shifted left & was squashing my IJV against the stub of my styloid. I had a number of intra-tympanic cortisone injections & finally a surgery in 2019 to put a shunt in the endolymphatic duct in my ear. That has left me w/ chronic loud tinnitus but did stop the progression of my hearing loss for a couple of years. I also had pain & pressure behind my left eye which stopped after my left styloidectomy.

It was 6 years later that I received a link to a research paper from someone on this forum that said a small group of people who’d been diagnosed w/ MD were discovered to have IJV compression, & once the IJV was decompressed, all but one had at least some hearing restoration. I jumped to getting a CTA & MRV (should have just had a CTV & skipped the other two scans) which ultimately showed I had bilateral IJV compression, however, my right side was asymptomatic. Further testing showed only my left IJV was squashed between my styloid & the transverse process of C1. With great hope, I had IJV decompression surgery plus a revision of my left styloidectomy in Oct. 2024. I didn’t get hearing restoration, but the surgery did stop the progression of my hearing loss & ended my vertigo so there were huge benefits from it.

Dr. Hepworth did my surgery, & he told me he believes MD is a symptom not a diagnosis. It points to IJV compression whether by the styloid or C1 or some other entity in the neck.

I have annotated 2 of your images. You have clear IJV compression on the left side based on the fact it’s nearly invisible up near C1 but much more visible below there, most likely coming from the TP of your C1 vertebra as the bit of calcified stylohyoid ligament that’s there doesn’t appear to be contributing. Your right IJV looks ok to me.

Your hyoid bone is quite unique. I’ve not seen one like it. The hyoid bone is usually a rounded U shape, but the body of your hyoid sticks out like a knob & the greater horns look quite thick. I don’t know if the shape of it is actually causing symptoms, but it could be why you can feel it.

A number of our female members have noted their ES symptoms are worse premenstrually or menstrually. We think it has something to do w/ the hormone fluctuations during those times causing more inflammation in the body.

The images I’ve annotated are below.

[Snapple2020]

Yep those styloids look like they could be a problem, Did the report give you any dimensions on those bad boys? They look pointy and sharp. Its hard for me to zoom in on this to see any real detail around C1/C2. Im sure Isaiah will take a look and give you more feed back. She also knows Menieres very well and helped guide me. I also having gotten working DX of Menieres.

Any chance you have hypermobile EDS? Did the cardiologist actually do your heart rate laying down, sitting and then standing for 10 minutes? If your HR jumps more than 30 BPM at standing, your in the POTS realm. I hope they do an ECHO on you but ask them to do that simple heart rate test on you. I attended an EDS symposium the past 2 days and there was talk about hormones and POTS and how depending on where you were in your cycle when estrogen is at its lowest how symptoms can worsen.

I also ask about EDS because I have been having some eye movement stuff. One doc said it was nystagmus that was causing vertigo. As it turns out I saw a neuro-optamologist recently and told I have some mild “convergence” issues that is not helping with the dizziness. Reading was triggering it. My family does have a history of lazy eye and I did have to get my daughter eye PT when she was younger. I recently learned this is all very common in EDS.

I pretty much have most of what you have for symptoms bought on by positional head movements, bad vertigo events last year with worsening hearing loss in one side. Im already had styloids out but going back in on the 22nd for IJV decompression and likely c1 shave. I also have bad TMJ and osteoarthritis in my jaw - get botox, massage, cranial sacral.

If you can upload the scan so someone can pull it into software, the styloids can be measured and can zoom in to look at possible compressions. Hope that helps. You came to the right place.

[Jules]

Hi & welcome!
I agree with the others that your styloids are long & look pretty pointy so could well be causing symptoms… I can’t see clearly enough if there’s any compression of the blood vessels on the images though, but your symptoms certainly sound like they could be vascular. With IJV compression you typically get light headedness/ off balance feelings, head & ear pressure, brain fog, pulsatile tinnitus, muffled hearing like you’re under water. Carotid artery compression can cause dizziness, headaches, TIA/ stroke like symptoms, fainting. So potentially you could have both. The vagus nerve is in the carotid sheath with the IJV and ICA so commonly gets compressed too, & that can cause anxiety, BP spikes, cardiac arrythmias, breathing issues, digestive issues. In addition, as you’ve noticed & @Isaiah_40_31 has said, your hyoid is unusual and chunky, so this could be adding to the mix, as if the processes are long sometimes they can irritate the carotid sinus, which can cause arrythmias too. So lots of possibilities, but I do think it would be wise for you to see one of the vascular doctors - Dr Costantino in NY, Dr Cognetti in PA, Dr Hepworth in CO, Dr Lui in NJ, or Dr Nakaji in AZ. Given that your hyoid bone might be an issue you could possibly see Dr Cognetti as he also looks at this?
I also noticed that there seems to be some other calcification under your hyoid bone where the thyroid cartilage would be, but it looks different to what we normally see in some images, but in the 3rd image you posted it looks abnormally thick, this can sometimes cause symptoms…
Your neck looks pretty straight too, we see this quite often, it’s known as military neck. Restoring the body’s normal curve can sometimes improve symptoms a bit, there’s info on this & exercises to do in this discussion:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
So plenty of food for thought!

[Isaiah_40_31]

@PeanutsMom - I’ve also annotated the calcification @Jules noted.

[PeanutsMom]

Hi @Isaiah_40_31 I am so appreciative of the time you took to share your history with me, especially the MD connection. I found the belief that “MD is a symptom not a dx” to be particularly interesting and certainly seems to track. I’m so sorry about your cycling accident and can relate - I’ve had several head/neck traumas and whiplash, and how the body responds and settles over time is impossible to anticipate. I’m so, so glad to hear the surgery stopped the progression of your hearing loss and vertigo - what a blessing. Dr. Hepworth sounds like a great doctor to reach out to, so thank you for sharing your experience with him. And thank you for annotating my scans. It is such a helpless feeling to not know what you’re looking at or how to interpret all the various components, so thank you for your time and contribution. You all are providing such great support in how I can proceed and advocate to the best of my ability. Sincerest thanks.

[PeanutsMom]

Very helpful! Thank you!

[PeanutsMom]

Hi @Jules, thank you very much for your insight! All that you shared is incredibly informative and I really appreciate your insight. So weird about my hyoid bone and additional calcification ?! Honestly it feels on brand to have something super unusual going on.. that seems to fit my profile (lol). And I will check out the exercises as well. I have always wondered how much the loss of curvature contributes to my issues. Sincerest thanks for your time and thoughts

[PeanutsMom]

Hi @Snapple2020 thank you for your comments! Yes, the cardiologist will be doing a full work-up, including an echo, stress test, and holter monitoring. And yes, I have been very curious about EDS and hypermobility as I know many of my symptoms match up here as well. So interesting that there is a vision/eye component to that as well! I will upload the styloid measurements. There were also several scans measuring the styloids to something else - I’m not sure what it is and it was not interpreted in relief or explained to me. Any insight would be appreciated! Thank you again and best wishes on your healing journey.

[cooky]

I am no expert by far, but I share most of those symptoms. I have been diagnosed with ES. Hope you get the help you need! Be persistent.

[PeanutsMom]

Thank you @cooky. Best wishes to you as well!

[Isaiah_40_31]

@PeanutsMom

There were also several scans measuring the styloids to something else - I’m not sure what it is

In the 3rd & 4th images above, I believe the radiologist measured from the tip of your styloid/stylohyoid ligament calcification to the lesser horn of your hyoid bone.

[PeanutsMom]

@Isaiah_40_31 Any idea why / what the value is in this measurement?