A CT with contrast may well show if the IJVs are compressed. Some members have been able to have this done with their head in certain positions which exacerbate the symptoms. It’s difficult what to advise you to have done first or who to see, as I know Mr Axon likes a CT done his way, so if you were going to see him then wait…You could see either him or Mr Hughes privately, then ask to go on the NHS list- one member was told you can’t do this any more but others have been okay doing this. But the wait for surgery will be long unfortunately.
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Have you had your eyes checked? If you do have IJV compression, it can increase the head pressure & can damage the optic nerve, so if you haven’t, a good idea to get that looked at.
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I’ve seen an opthalmologost recently as I have severe dry eye for years, and I was recently diagnosed with posterior vitreous detachment, which was a surprise as I’m only 33 and they told me it’s normal in people 60+. So I think there is probably a link there?
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One of the things I have learnt from this forum is that I wouldn’t count comparing yourself to the ‘usual’ symptoms. This is particularly the case for the vascular variant of ES. There are really only a handful of scientific papers in the literature talking probably about sub-100 patients for IJV styloid-C1 compression.
If you look at classical eagles of course there are more cases but the typical symptoms are fully dependent on what nerves are irritated by the styloid.
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From my researching and trying to use my CAt scan software, it appears to me that the gap between the styloid and C1 (if I’m measuring the right things!) Is very small on my left side, and still reasonably small on the right. Does this look like I’m measuring the right things?
@Warrick - I had the posterior vitreous detachment in my mid 50s, one eye then the other about a month later. My ophthalmologist said it’s most common in the late 40s early 50s but as @LimeZest said, there are always outliers so you can’t compare yourself to the average numbers.
It does look like you’re measuring the right things.
Yep absolutely correct, yes in my opinion that would be classified as tight
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Although @Warrick I would try to get the measurement distances in your sagittal and axial views to match. Your side view measurement looks a bit wonky and doesn’t stretch the full interspace.
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Just want to make an addendum to what I said earlier regarding the BeeDicom viewer. It does do 3D scans visualisations.
Finally managed to look at my styloids in 3D, right one certainly looks beefy and close to C1!
So @Warrick if you have a mac, can recommend Bee DICOM Viewer on the Mac App Store (apple.com)
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I’ve noticed today when I bent over that I had a clear watery liquid drip out of my nose. I’m worried it may be CSF. Has anybody else had this kind of problem?
Yes known to be csf… traveling so can’t look up but search nose and csf. Sorry (((
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Some members have had CSF leaks from high intracranial pressure, yes. It is possible to test the fluid if it happens regularly, although I don’t know if your GP would agree to it…definitely worth mentioning when you have your neuro appt though.
Although your styloids look quite narrow on your 1st CT image, the gap between it & the C1 process does look small…
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Definitely could be CSF, i dont think I have had that myself, although now you mention it i have had some clear liquid too but just thought it was mucus… but intracranial pressure can cause leaks which in some cases spontaneously heal after the IJV compression is improved.
I would very much recommend you make a big log of symptoms, how they started, when they started etc. Having a clear picture of your history will be super important for appointments.
Another thing to try if you suspect a CSF leak is to lie down for an extended period of time, in principle people with CSF leaks often display orthostatic headaches. Are you headaches worse when you stand up? Do they appear in the second half of the day?
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So I was just surprised by it today, when I suddenly had a runny nose after bending down for a few seconds. As I haven’t had any mucus or such like recently, I looked at it in the mirror and it was very clear not like usual nasal discharge, so It made me suspicious.
I then tried to simulate it again by bending down for 30 seconds which has now brought on a decent headache across my forehead for a few hours!
I would say my headache probably does gradually worsen throughout the day yes. But to be honest I wake up with a mild headache too!
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You might also want to look into Chiari malformation, it would be picked up in an upright MRI anyway but just so you are informed about it. All of these things have very similar sets of symptoms.
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@Warrick - As disgusting as this may sound, if the nasal discharge after bending over happens again, taste it. CSF fluid tastes metallic whereas normal nasal discharge just tastes salty.
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I did think I should have tasted it! Not happened again since!
Just wondering, has anyone suffered with brain zaps / pulses.
I will try to describe what I’m feeling. It wakes me up early morning and it feels like a sudden rush / pulse in the back of my head, almost a wooshing sound that lasts only a second, it worst of suddenly increases in volume and sensation and then disappears. I’m not sure if it feels like blood rushing to a part of my head or what but it’s very horrible feeling. Not painful. Just horrible. It doesn’t happen once I sit up, it’s only in the early mornings, so presumably caused by lying down too long in a certain position?
All I can find online is brain zaps but they are describee as electrical. It doesn’t feel like an electric shock, but maybe sounds a little bit like it.
Intracranial hypertension can cause weird symptoms, I used to get a feeling of my brain being rolled up, another member described it as a sucking feeling, so maybe it could be that? Do you lie flat at night? If so try sleeping slightly propped up as that can help.
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