Hi all, new here but have been reading around the site for a while. Am based in UK.
Developed series of symptoms, including persistent headache, brain fog, intermittent sleep disturbance, neck pain, shoulder pain, clavicular pain and tightness in suboccipital region over the course of the last year. Headache came on suddenly, possibly after small head injury in Dec 2022.
Have spent a while incessantly researching on this topic, had upright MRI in flexion, extension and rotation views - no immediate signs of instability.
Tried physio to increase neck strength which maybe improved things 5-10%.
Recently had cone beam CT of CCJ showing 1.2 mm SP to C1 interspace on right and 4.2 mm on left. So now querying venous obstruction in jugular vein.
My question is from experience where to go here? Was suggested to see Mr Timothy. But would really love some advice on how to proceed.
Also in funny twist of fate (luckily still capable of working). I’m an academic at UCL…just around the corner from queens square.
Did you get a cope of your CT, did it mention how long the styloids are? Sometimes just removing the styloid can be enough to free up space & the IJV can reopen, but others have found that C1 is more the issue & that needs shaving.
If it’s styloids causing compression (we can’t always tell, but if they’re elongated or very angled it could make it more likely to be an issue), then maybe Mr Axon at Addenbrooks or Mr Hughes might be a good bet, but if it looks more likely that C1 is the problem then Mr Timothy would be the man for that! @KoolDude & @PatientD have seen Mr Timothy so can hopefully give you more advice- good that you’re very close by to him!
I’ve got a copy of CT - what’s the best way to upload here? It didn’t mention length. Have made an attempt to measure myself but not sure where to start and finish. I think approx 30 mm.
I’m also wondering where is best place to get CTV done? Also how to navigate NHS or private?
I’m also in the UK (Essex) and I have similar symptoms, I’ve had scans at Medserena in flexion, extension, etc and showed no CCI or AAI, just small disc bulges at C5/6 and C6/7 which were not uncommon for my age apparently. Had a CT scan just over a week ago but haven’t seen the results yet and follow up is January. I saw Dr Hughes. It might be worth a visit, especially if you have the scans already. I went private because I have insurance and even then it was a 4 week wait. NHS is much, much longer.
Dr. Timothy does prefer to do his CTV at his Leeds hospital so if you are considering him you might as well do it in Nuffield health in Leeds. He only does C1 trimming and does not remove styloid at all so that is something to consider. He is good doctor and patient safety is his priority. I did post some his work images and videos in the posting below. You can read and watch the surgery video if you want to get more info, you can also to go his website.
You can use the upload function (at the top of the text box when you type a reply) to upload images- if it doesn’t work let us know as sometimes new users have to post a few times before they can upload images. Just make sure there’s no personal info visible! Otherwise members have used dicomlibrary.com & posted links from that. Measuring yourself probably won’t be very accurate- even radiologists get it wrong! You can still judge length by looking at how far down your neck the styloids come, & it’s helpful to look at the angle and width as well, and also distance from the C1 processes.
As @KoolDude says, some doctors like CTs with contrast done in a certain way, so best to check that with whoever you’re thinking of seeing. Nhs waits are horrendous right now, private is better obvs! All the doctors I’ve mentioned do private work, usually a referral for a GP is needed, but with some you can book online directly.
Welcome to our forum @LimeZest. I’m sorry for the symptoms you have but am really glad you found our forum. @Jules has given you helpful information & we’re all here to support you & to help answer questions. I hope your quest for the right doctor is short.
Few thoughts- who you see Mr Hughes (styloid) or Mr Timothy (C1) will depend on which bone is (most) compressing your JV. Imaging should show this. queens Sq can help with diagnostics (Venogram/ICP monitoring etc) but have not helped with operations in my experience. Think maybe as compression issue is below brain itself at JV. Of course JV does go up to tip of dens in brain. See doctors list but some Other names members seen -Mr Toma:Mr Watkins (both QS), mr Obholzer (welbeck?), mr Axon/Higgins (Cambridge-issues here getting help). Hope that’s helpful. Remember styloid is not just length, can be angle/thickness etc too. Good luck. D
Please feel free to download and look - styloids do go down to base of C1 and towards C2 from what i can tell from the axial scan - but these are cone beam so probably not as good resolution compared to regular CT.
@Skatkat yes my medserena scan had pretty similar outcome to what you describe, lower cervical disc bulges, with no typical signs of instability. I do have some of crepitus in the upper neck, but maybe this is just due to the tightness from the SP-C1 spacing. Equally, hard to say if the static images can detect mild ligamentous laxity where the muscles are compensating well - but i’m not a doctor (at least not the medical kind).
Thanks for posting, I’ve had a look through some of the images but to be honest I’m not 100% sure what I’m looking at so I’ll leave it to some of the more informed people on here to give their views.
I also worry about the muscle compensations, I was very tense and clenched when I did my Medserena scans and afterwards I wondered if I had not been so tense if they might’ve had a different outcome since my Grabb Oakes was 8.1mm and the cut off is 9mm, we’re talking less than 1mm away from instability. A normal Grabb Oakes is between 6-7 though so I suppose it works both ways. I’m still waiting for my CT scan images from the Cleveland Clinic in London, my follow up with Dr Hughes is early Jan so I might not get them until then. It will be interesting to see how things have progressed since the Medserena scan about 18months ago.
Yeah, i would say i was relaxed during mine, but i would say i have seen a couple of others reports online where they do have instability and it is pretty clear. Again not an expert, but i wouldnt think about it as 1 mm away from instability - i think as these are static images to describe ligamentous laxity so difficult to judge. Ideally we would have pre-symptomatic imaging as a comparison but of course very unlikely.
The measurements from my upright MRI and cone beam CT are very similar, equally i think more accurate to measure some of these distances and angles from CT which is higher resolution that the 0.6T magnet they use for upright MRI. For instance my CXA was reported as 139 in the MRI report, but cone beam CT shows 142. So you might find different numbers because of that. I also read a seriously good study from Australia which was published earlier this year (am an academic so i have access to scientific literature without paying out of pocket) which showed that non-symptomatic people have pretty varied measurements.
So to clarify - seeing as i dont know if its C1 or styloid compression what is the most cost effective way to do a CTV and who should I go to? What i am afraid of is i would need to do two CTVs, one with Mr Timothy and the other with Mr Hughes if they prefer specific contrast etc.
I’m sorry, I’m not knowledgeable enough reading the images to be able to see, so can’t tell you what’s causing the compression & which doctor would be the best to see…you definitely don’t want to got through two lots of CTs, I don’t know if either of the doctors offices would be able to help with info on that? Might be worth emailing?
Hopefully one of our other helpful members can have a look at your MRIs!
I’d say if it was genuinely down to cost then Dr Hughes is available on the NHS for free (albeit, very long wait) whereas Dr Timothy is only private as I understand so you will have to pay for it all. If Dr Hughes doesn’t think the SH is the issue and thinks that the C1 is the issue then he might be able to refer you on to another NHS doctor who does this (I’m not sure about NHS doctors for this but other members may know). If you want to pay then I think I’d go to Dr Hughes first because that seems to me like the least risky surgery and I think I’d rather have my SH out than have my C1 messed with. However, I might change my mind on that if someone can interpret the scans.
My thoughts- you only want one CTV done, with contrast & head rotation. You need to decide if you will go down private or nhs route (with delays that involves). In my experience radiologist reports are often lacking in both sectors. Mr timothy is only private but in my experience he is very good at diagnostics & he would tell you if was C1 or styloid. In my experience C1 trim is a much easier operation than styloid removal is, especially if need removal to skull base. My C1 trim scar is 2.5cm scar below my ear. Styloid removal is scar from windpipe area along neck to under ear. Both surgeons are skilled on surgery. In your shoes I’d explore all options & £ & then decide. Get copies of scans so you can look yourself/get 2nd opinions etc. good luck. D
On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that. Have a poster about this will try to post soon. D
Great thanks all, and in your experience if i decided to do NHS or private route how best to approach both. Private is obvious to me, just get a consult either Mr Timothy or Hughes.
But from an NHS perspective, how can i convince my GP that this is the issue - i had my cone beam CT done from Iain Smith the AO chiropractor - so i’ll be blunt i suspect my GP wont recognise this. So how to get them to do an NHS referral should i decide to just wait it out. My symptoms are not that bad right now, i had a big flare up in the spring, with dysautonomic symptoms and crazy intracranial pressure. But things settled and i’m at a 2-3/10 pain in head and thoracic pain most of the time.
But if i did decide to go private i’m assuming its basically impossible to get back into NHS.
Then regarding costs - can any of you give an indication what the costs look like for consults, CTV with rotation, styloidectomy or C1 shave?
@PatientD i will try those practical tests - i remember feeling right at the start of this (and also now) this want to crack my neck in one direction - i was doing it for a little bit before realising this whole nonsense could be coming from my neck but have stopped now. Hence the reason why i thought instability could be an issue and the scan at medserena. I have been checked over for a lot of those things you mentioned by Iain Smith at Newport Chiropractic who check my leg length and general symmetry - but i will do this anyway.
Also another question for anyone who can help, does anyone who definitely doesnt have instability still have crunching at base of skull from tight fascia/muscles? My crepitus disappears when in a hot shower so curious what people think of this.
Can i ask which radiologist read your report? Was it Prof Francis Smith, had my scans earlier this year after he passed away and he was considered an expert in this.