I’ve been struggling along with a myriad of symptoms which began after a bang on the back of the head / neck. I’ve been suffering dizziness headaches and fatigue, which have now progressed to tinnitus and head pressure.
I suspected craniocervical instability and have begun a course of prolotherapy, and I’m considering flying out to the USA for more accurate diagnostic tests.
I’ve had a CT scan in Spain which was solely to report on the Brain, but the radiographer kindly scanned part of my neck also, at my request. I’ve been studying these images myself, and I suspect I may have come across elongated styloids. If indeed I am looking at the correct anatomy, they appear to measure around 3.5cm and drop down past the Atlas. So I now wonder if jugular vein compression is being caused by these styloids, or indeed cervical instability, or both!
I hope it’s ok to upload an image of my scan here if anyone can confirm what I’m seeing?
I’d also appreciate any advice navigating the NHS!? My GP doesn’t have a clue and I’m currently awaiting an MRi and first neurology assessment at the end of the month.
Hi, thanks for your reply I will definitely check all of that out. I’ve been looking to see Dr Smith at Newport chiropractic so would be interested to know anyone’s reviews on seeing him for instability.
I can highly recommend Dr Iain smith for anything you think related to the craniocervical junction.
I think most us probably have ended up thinking along the same lines. Regarding CCI, if you can afford it, go to have a upright MRI scan at medserena in London, it’s expensive but I think the best we have to assess it. I am not super convinced by DMX, I haven’t had one myself we don’t have any in the UK or Europe. As far as I am aware the fee neurosurgeons in this field use the upright MRI measurements not DMX.
Where have you had prolotherapy done? Both in terms of which clinic and what parts of your body.
Just seen your image, are you able to see what the distance between the atlas and styloid is. Usually a side (sagittal) or top down (axial) view is best.
Hi, yes I’m just trying to measure that distance, but not super confident in the software I’m using which is in Spanish!
I’m assuming the image I posted shows the styloids dropping down past the atlas? They measure around 3.5cm
I’m in discussion with Dr Ian’s office to go to see him for his scans etc. I haven’t looked at medserena in London so will check that out. I’ve been considering caring medical In Florida for the CCI and DMX scans, and see he also has knowledge of styloid issues and does a number of scans in office to assess this, so may well book in to go there for a full assessment.
I’ve had one session or prolotherapy at prohealth clinic in Bedford. He gave dextrose down the centre line of the C spine ( I think superficial so just the nuchal ligament?) And also ozone injections across the skull base ( I think targeting the tendon holding the neck muscles he said). That was about 3 weeks ago, and symptoms unfortunately progressed rather than noticing any benefit.
As @Jules suggested try the Radiant viewer, or I have used the BeeDicom on Mac which comes from the App Store which is free which doesn’t do 3D views but still good.
Yes you are correct the styloid do extend beyond the atlas, and I am no ES expert but would say that means they are elongated to some degree. Equally many people here say that length isn’t the only issue, thickness and angle also make a huge difference.
Yes so you’d be looking at the varipose cervical spine and CCJ scan for £1500. Go to the Medserena in London, not Manchester.
How long have you had symptoms for out of interest?
I had a neck / head Injury I August and symptoms progressed rapidly from then, but beginning to suspect I may have been developing symptoms slowly before that.
Did you have any adjustments with Dr Smith or just tests?
He did some functional neurology tests on me, a cone beam CT and what’s called a postnasium X-ray, basically to check alignment.
My neck seems perfectly aligned even though I have loads of crunching etc coming from there so I didn’t have any adjustments with the Atlas Orthogonal instrument.
I have previously conversed on Reddit with @Lababila who I think did have adjustments and so has @PatientD.
That’s interesting and good to hear you saw him and didn’t get any adjustments as I was worried I might get adjustments I didn’t need! I’ve unfortunately learnt the hard way with a general chiropractor doing high velocity adjustments to my neck which probably made things worse.
I’ve basically been suffering worsening blurred vision, eye pain, intense tinnitus, pulsating tinnitus, dizziness, head pressure, etc etc which is slowly worsening, so I am keen to get sorted ASAP!
My NHS MRI scan Is in 08th Jan, so if that proves negative, I will move to the next step.
Is it a viable option to see Dr Axon / Hughes privatel, and then if indicated, move to their NHS caseload for any surgery?
Does anyone have an idea of the cost of styloidectomy privately?
Iain doesn’t do any high velocity adjustments to the neck, in fact he told me quite straightforwardly it’s a terrible idea (at least for me). If you want a rough breakdown of costs for a consult with Newport chiropractic you are looking at £220 or so for 2 h consult, £500 for CT scan, £100 for analysis and £70 or something for the post nasium scan. But would get in touch with them for an accurate set of numbers.
Regarding Mr Axon and Hughes the others will have to let you know. My next plan is to see Mr Timothy and have a CTV to check for jugular vein compression.
I’m located in Devon so not sure who to see! I suppose there are no Drs in the southwest region? I’m considering paying to see Dr Axon or Dr Hughes privately as that seems reasonable at £275, and potentially they can put me on a pathway to treatment?
Was Dr Ian Smith able to determine anything regarding your condition? He ruled out a misalignment I assume? Was he able to comment on instability or was that just done with the MRI in London? Did he comment on your styloid process?
Really appreciate your advise! Sounds like you are a bit further ahead on a similar journey to me?!
Not sure about southwest region, I think there is a doctor’s list but from memory you are mainly looking at Addenbrookes in Cambridge or London.
So Iain I would say is relatively non committal to saying yes it’s this or that, which in my view is a good thing. He will see based on scans, tests etc but of course when you have a range of symptoms it can certainly be because of many things, but only until you tackle it and symptoms disappear can you be truly sure. For instance , you can only be sure styloid are causing an issue until after a styloidectomy.
So he commented that my alignment was ok, that my neck measurements (e.g. clivo axial angle) were within normal limits from the CT scan, which aligned with what my MRI report said.
Yes it looks like it, I suspect my issues came on from a mild head/neck injury too. I didn’t detail too much about the injury - which was a sudden jerk after being hit by a set of heavy cushions I didn’t see coming - but it happens a day or so before symptoms started. You can read my story here https://gurnanipratik.wordpress.com/2023/12/26/10/
Only posted it 2 days ago. Yesterday was my first year anniversary of symptoms.
Really interesting reading your story and really appreciate you sharing it. It’s very similar to me. I had an electric garage door deliberately closed on me ( I won’t go into details) but this caused a sudden jerking of the neck and pain but nothing that caused me too much alarm. I didn’t feel pain the following day but within 3-4 days I developed a stiff neck and headache and dizziness. This then progressed to many more symptoms as described above. I identify with how you have felt exactly and can certainly say I’ve had the same dark thoughts at times.
I hope you will get some answers soon, as do I hope for myself.
Very interesting how close your styloid sits to your C1. I will be measuring mine on my CT scan as soon as I can!
Yeah I can certainly relate to that. I think I had some vascular symptoms before this for 5 years. I had tinnitus, some dizziness and would get very similar headaches to the persistent one I have now.
Please keep in touch and update us on your progress!
I’ve also sent you a direct message about something.
Hi, I’d say don’t do more prolotherapy until you know more. This journey can be both expensive and difficult and it’s important to use your resources and time wisely. I would not go to USA for now unless you can’t get diagnosis here.
I think it’s worth you seeing newport chiropractic as they are reasonably priced, very knowledgable and careful. They have contacts with others who may help you.
An accurate diagnosis is first step. Is it CCI, Eagles/Ves, or both? Is there JV compression, if so by C1,styloid or both?
Once you know that (easier said than done), then that can help determine who can help you.
On NHS I’d say Queens Sq London can help with diagnostics so ask gP to refer you there. On Eagles/VES you need ENT. Mr Hughes NHS practice is at Royal national ENT & Eastman Dental hospital in London. Mr Axon is at Addenbrooks Cambridge but I think he has difficulties operating now. He has been no help at all to me.
There are private Uk options but you need to find out what is root cause first. If want private route options happy to share that. Hope you find help you need. D
Ps. Some simple CCI self tests- in mirror does head tilt slightly to one side, is one ear bit higher than other, is one shoulder higher than other, is one hip higher than other(put hands on hips), lie down with flat shoes, with friend or family member put feet together, is one leg slightly shorter than other at heels? If so this may suggest CCI as possibility. D
Hi patient D. Thanks for your replies, some very helpful and interesting info. I’m a bit lost with it all at the moment and trying to figure out a pathway to take. As you say, it can get quite expensive quite quickly!
I’m thinking about paying for a private consult with somebody in the UK, but not sure who is best. When you say Mr Axon is not operating, is both privately and via NHS?
I’m not sure how the NHS works but I would be surprised if my GP referred me out of county let alone even to an ENT at the moment. I’ve moved my own neurology referral out of Devon to Somerset due to a 12 month waiting list. Would you say that my NHS neurologist (first assessment 28th Jan) will be any use, or should I crack on and see Alan ENT privately?
I’m also wondering what diagnostics are best for this to definitively say whether I need a styloidectomy. Is CT enough or should there be blood flow studies done somehow to prove the insufficiency?
Your styloids definitely look longer than average from your image, they look quite thin & needle-like, as @LimeZest has said you can’t judge the distance from the C1 process…I agree with @PatientD about travelling to the US to Caring Medical, I think you’d do better to spend your money getting a diagnosis & treatment here.
I’m trying to work my scans to get the different views but the scan is from a Spanish hospital with their own software called RAIM viewer and very glitchy. No idea how to convert it to Dicom as the file types are just called ‘file’!
I don’t really have the traditional type of symptoms many people mention in regards to jaw pain or painful swallowing. Although I do feel a lump in my throat? My symptoms are predominantly head pressure dizziness and tinnitus. But more concerning is my vision worsening.
