Wow I have just heard from Addenbrookes, I have received my first appointment with ENT for next month, I cannot believe it. Maybe my email yesterday helped, who knows. I am just relieved I haven’t got to wait 9 months after all.
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Wonderful!!! Who is the appointment with? Axon?
It doesn’t say, just ENT but my referral was to Mr Axon for possible ES so I hope it will be at least one of his Team. When I heard that I had been triaged for appointment in 9 months, I put together an email asking if my Styloid/ECA & IJV compression had been taken into account and that it had been previously missed under the NHS. Then out of the blue receive an appointment for next month. So thank you everyone who has helped me with this 
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Good job being a self-advocate with that email, @Rosie! I expect your message to Mr. Axon’s office made a significant difference in the timing of your appointment. 
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That’s fantastic news @Rosie , I’m so pleased for you! 
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Hi all, I was just looking for a bit of advice regarding one of my axial slices. I believe I have labelled the IJV & SCM muscle, but has anyone any idea what the ? is. I have some swelling below my left ear/behind the ramus of the mandible & left mastoid pain that appeared not long after my other symptoms started over 12 months ago. I have run the sequence through and this appears and disappears quite quickly. Any thoughts would be much appreciated.
Maybe mastoiditis?
My mastoid bone is tender but I am tender all around my ear. There is no swelling behind ear and its not hot to touch. Blood tests and counts are all within normal range. It is odd as its the side I have all the pain.
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That is odd, @Rosie. I’m sorry I don’t know how to read the axial slices very well, even w/ all of @TML ‘s help. Have you tried looking at that area via a 3D image to see if anything shows up that looks “different” on the right side vs the left?
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@Rosie I’m not 100% sure what it is, but I labeled the other side to get a better idea of what it should be mirrored. I think it might be a couple “enlarged” lymph nodes taking up some space and jumbling things up? This could make sense given your IJV compression on that side. Lymphatic drainage could be backing up? I’m not entirely sure but there does seem to be more “traffic” happening on that side than your other side. Lymph nodes commonly come in and out of frame since they are small pockets.
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Thank you @TML that makes sense, I now remember seeing something on my CT report mentioning lymph nodes around my IJV, so that must be what we are seeing. Strange if the radiologist noticed them that they didn’t see the IJV compression. Do you think the Styloid could be causing the inflamation of these nodes or just the IJV compression or possibly both. I also get some swelling above my clavicle, which comes & goes so makes sense that this could be lymphatic fluid and not TOS? Thanks for your help.
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I think in your specific case, your styloids are too far from your lymph nodes to cause direct irritation (at least the ones down by your hyoid/thyroid). I think the IJV compression by the styloid might be causing it all.
Regarding the clavicle swelling I’m not really sure. If it’s the same side it’s possible. I’m not too knowledgeable about the lymphatic system. Where exactly in relation to the clavicle is the swelling occuring?
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@TML thank you for your reply. I have just found this regarding ECA dissection. Considering my ECA is wrapped around the end of my SP it makes me wonder if this could be the cause of the inflamed jugular lymph nodes.
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We do see members with enlarged lymph nodes regularly on here; quite often surgeons will remove one or two when they remove the styloids to check that nothing sinister is going on, it usually seems to be due to inflammation, my guess would be because of the styloids irritating everything.
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Interesting! Certainly possible! I don’t think you’d have ECA “dissection’'“ though (i.e. a tear in the wall of the ECA). I think you’d have nasty stroke-like symptoms and be hospitalized, unless the tears are really really tiny. I wonder if the ECA irritation by the SP is enough to cause lymph swelling. Do you have any eye symptoms?
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Yes I think maybe the left SP is irritating the ECA, I am constantly dizzy, awful left occipital & temporal headaches, ear pain & tinnitus and throbbing neck pain. I don’t have eye pain but I do get blurred vision in my left eye which comes & goes.
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Congrats on finding another obscure but possible link to ES symptoms, @Rosie.
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I know I am always trying to look for “the reasons why” or “what would cause that”. I suppose some people find it easier not to know but others need to try and find answers, we’re all different, in a good way. On the plus my GP agreed to prescribe me a muscle relaxant yesterday, so will give these a try hopefully they will give me some relief with the neck pain
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I hope the medication helps @Rosie … I agree that searching for answers & understanding helps, for me sometimes just knowing even if nothing can be done is helpful, but obviously not when it’s something so debilitating like you’re going through…unfortunately we do have to research & advocate for ourselves, I hope @TML 's story inspires you to keep going
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Hi all, quick update after my appointment at Addenbrookes this morning. I was surprised to see Mr Axon in person, which was great. He has added me to his NHS waiting list for styloid removal and C1 transverse process resection. There will be around a 12 month wait, but I am just pleased I have made it on the surgery waiting list.
Thank you everyone who has supported me this far.
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