HI/ how to rule other conditions besides es/ves before surgery

General
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All my symptoms flared up after an endoscopy where the doctor decided to dilate my esophagus last July( without me knowing, they say its pretty common). I took antibiotics since they found pylori and since then I have been having stomach issues and can’t eat normally. Eat very few things; nothing with condiments nothing too sweet or acidic neither too cold nor hot, no coffee, etc. very few things. I did find after that about having calcified ligaments after seeing a maxillofacial.

My teeth, lips, and mouth are numb when I wake up, extremely dry mouth, headache all over, normally used to be one-sided, weird neck pain, occipital pain, and glass feeling stuck on the right side of the roof of the mouth, pain in the lower back, grinding/stretching feeling on the roof of the mouth. Feels like swallowing sand, a sensation of a foreign object, and grinding on the throat. I can hear my jaw stretching when doing certain mouth movements. Frothy salivation from the right side (worst side) as soon as I move as I wake up and lasts all day, even though my mouth is dry. Loud head cracks in the same right spot almost the back skull close to the ear (morning and night) when lying down, even if I don’t move like it builds up. Just want to sleep, but being flat makes everything worse. Some Drs I’ve seen think it’s more of a glossitis /neuralgia or even MS than Eagle’s would want to rule that out before ES surgery.

I thought TN or GPN were consequences of the styloid ligament (calcified styloid) compressing the jugular or is it a completely different condition?. Can someone explain if there’s a path to follow to rule one or another since different treatments? The chicken or the egg? The swallowing sand/grinding symptom is constant and aggravates after eating in addition to a feeling of roof-of-mouth numbness /sandiness. Also, when drinking water and brushing teeth. The only time where I’m painless is WHILE eating, 2-3 mins after I start salivating and experience grittiness, numbness, and burning, again in roof of mouth and throat. Tons of frothy salivation is worse after eating. I have also been struggling with GI issues. Unsure if acid reflux or a leak;/?

Headaches mostly when waking up. Also experience chest pain left side, hand numbness, and right shoulder pain. What to treat first? I’ve read a lot of posts with/ very similar symptoms that had styloid removed to later find out that they needed microvascular decompression treatment for trigeminal instead, or that it was due to cervical instability, or that it was a hyoid issue or TMJD, etc. I’m lost and in constant pain. Is there an order to rule these conditions out and is there a doctor that can guide you through this or look/order at your images?

Do you believe that getting a current/updated cta/CTV (never done) or ct w 3d to check artery compression or a fiesta sequence to check for nerve compression is necessary?

The only exams I have are a ct cervical spine w 3d and a ct soft tissue of the neck (most of the doctors seem to pick to look at this one even though is a much older exam). Does anyone have/ similar symptoms or have any feedback? Would hate to jump into ES surgery to find out it’s something else, although understand there are no clear answers w this condition(s). Also, insomnia, occasional dizziness when switching positions in bed, and sensitivity to noise and smells but that’s the least of concerns.Thank you very much any feedback appreciated

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I’m currently on this path as well. I have been told that my styloid processes are approx. 1cm too long and I have discontinuous calcification of the ligaments. The doctor wasn’t convinced that this was causing all of my symptoms (I have many throughout my body) but I can have the surgery if I want. However, given that it’s pretty major and carries its own risks I don’t want to jump into surgery on the chance that it could be ES. Things I have looked into and currently looking into:

  1. Physio for the neck and back (ongoing)
  2. TMJ (ruled out)
  3. Wisdom teeth (ruled out, had them out)
  4. Breathing pattern disorder (incredibly difficult to get any doctor to take me seriously on this in the UK)
  5. Alcohol (I drink very minimum and only red wine, but when I do symptoms get worse)
  6. Acid reflux (still under investigation, might explain point 5)
  7. Tension/anxiety (currently working on deep breathing which helps for a few mins while I’m doing it but everything goes back to normal after)
  8. CCI/AAI (ruled out, several MRI’s)
  9. Vascular issues from ES or possible TOS (still looking into)
  10. Speech and language therapy for possible tongue thrust/tongue position issues (waiting for referral - can also be caused by forward head posture/neck instability)
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Firstly TN and GPN can be caused by the styloids themselves compressing or irritating those nerves, as well as possibly being caused by a blood vessel compressing them at the skull base. A FIESTA MRI could show this, but they’re quite hard to get I think, and might not show all compressions I think. We have had members who’ve had MVD surgery for TN or GPN & this hasn’t helped their symptoms, I know that’s not helpful to you, but often surgery is the only way to confirm/ resolve ES or the other conditions. It varies depending on which doctors you see- a Neuro would probably suggest the MVD first because that’s their speciality, but if you saw one of the doctors specialising in ES they might opt for the styloid removal first- and I don’t think MVD surgery is any easier or less risky than ES surgery so that doesn’t make any difference.
Just a note about your GI issues- the Vagus nerve can be irritated by the styloids too so could potentially be causing this with you?
A new CT with contrast could potentially show if you do have vascular ES; some members have been able to get it done dynamically so if you find symptoms worsen with certain head positions, this might be helpful? If doctors are thinking MS could be a possibility, an MRI would be helpful for that. I think a lumbar puncture too, & some doctors do that to check CSF pressure which if there’s jugular compression would possibly be increased, so that could be something to consider, although there are risks with lumbar punctures, so this isn’t to be undertaken lightly either.
If you think you have CCI, there have been quite a few posts about this & ways to diagnose it, so you could search the past discussions for info about that. Again, treatment for that isn’t easy or risk free & we’ve had members go through that & still have ES symptoms, so again there’s no set pathway to follow & an order to rule out one or the other I’m afraid!
Unfortunately no one doctor would probably take you through all the different possibilities as they’ve all got different specialties, it would be lovely to have a doctor who looked at things holistically but that doesn’t seem to happen…I wish I could give you answers but there’s nothing definite. @Skatkat has given you a few pointers as to things to look into, hope that helps…

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thank you jules im just overwhelmed and the choking grinding is bad

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I had really bad choking at one point and this might sound weird but when it gets bad I stretch my glutes/hamstrings and then concentrate on relaxing my shoulders and the rest of my body (just sort of letting them go) and it all loosens up a bit and the choking goes away. This is why I’m not completely convinced that it ES. I have been going to lots of different places for diagnosis and like @Jules has said there isn’t one place to go to get a definite answer. I have a huge phobia/anxiety about surgery which is why I’m so desperate for it not to be ES and I was already investigating some of these possibilities before I had my results for ES.

Another one I haven’t mentioned in my list is Binocular Vision Dysfunction (BVD) which I have also been diagnosed with and have probably had all my life, but now I’m 40 and my eyes are getting weaker it’s a bit harder to manage and it can cause all sorts of symptoms, neck tightness being one which then has a knock on effect throughout the body.

One of the biggest issues is that you’ll find a few things have the same symptoms so it’s really difficult to know what is causing what.

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I’m in the UK. I have chiari malformation type 1, disc bulges in the neck and elongated styloids. So gone around in circles since 2016. Last year I saw Dr Rupert Obholzer and he looked at all my CT scans since 2012 and ruled out chiari. I initially thought I might have CCI as I have balance issues. I did some vestibular rehab and it had helped a bit. My biggest issue is continuous jaw and temple pain and pressure. Styloids are 4.2cm on left and 4.6cm on right. I do wear a mouth guard for tmj but have no clicking/popping in the jaw. I can also fully open and close my jaw too. I have finally decided to see Mr Hughes and if he agrees will opt for surgery as I’ve lived in pain for very long and can’t carry on like this anymore. x

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