Hi Folks,
In my last post I’d included a few CT images showing the styloids and proof of ES. Since then, I’ve looked at more detail & been trying to learn more. I was about to see ENT following referral by GP after showing them some of the scan images that show ES clearly. Before that, the scan reports had said nothing abnormal, so ended up self-diagnosing ES, not just because of the boney thing sticking into my throat cavity by the tonsil & all sorts of symptoms, but from analysing my scans using RadiAnt - thank you for the recommendation for that programme on here - and also for being so helpful on here with your comments on the few images I put up.
I showed a range of scan images to ENT (appt. came quickly). Two ENT doctors (one a registrar, one a surgeon) saw me, listened, didn’t rush - and now fully agreed with the ES diagnosis, as did the Neurologist to whom I sent the info & selected images too (as he was the one who sent me for the scans when I suggested ES to him almost a year ago). Basically the Right styloid is elongated to about 5.5cm, the Left to about 4cm.
Also showed them more images that show the Right IJV compressed between the upper part of the styloid & the C1 atlas process (& a bit suggested on the Right side too). (Some images below.)
The internal carotid artery looks OK to me (but what do I know!) on the CT axial/arterial slices, as have read about impingement & dissection risks with the ICA that (CAD). I do get a stabbing in the Right side of the neck occasionally when moving the head a certain way, next to the hyoid/pulse is felt and sometimes higher up. However, that’s the same side where what must be the end of the long styloid is protruding into the throat cavity - so the stabbing can’t be the end of the styloid. Thinking could it be the horn on the hyoid poking the Common Carotid…? Looks very close & could look different with the head at other angles. I had 18 months of horrific head pressure, slegdehammer heads and tachycardia and nearly collapsing feeling like death, that I kept telling the GP felt like I was going to have a stroke. That 18 month period eased off a year ago weirdly (still have a range of the other symptoms, but not those particular ones to that extreme). I read somewhere that carotid artery dissection CAD can sometimes heal itself and wondering if that may have happened to me. Perhaps will never know.
Anyway, the neurologist has confirmed about the ES and the IJV compression & now sending me for an MRA scan to check the carotid artery & other arteries etc. in the head (hoping it extends to neck too), even though he said there’s no evidence of the ICA being affected, though the styloid is right against it in the scans. (Not sure if a healed artery wall could be determined either). He’d discussed it with the neuroradiologist, who had said she’d known cases of ICA dissection causing strokes/ thrombos etc. I’m very grateful to be having this scan just to be sure - and hope it can identify where the stabbing in the neck is too.
I’m uncertain about the IJV compression/ stenosis, if it’s something to be concerned about. The neuro said he believed that ENT are dealing with it, but not heard anything from there since the appointment & seems out of their field. All that resulted from the ENT docs was that the surgeon could do an intra-oral removal of the tonsil and cut the end off the styloid (sticking in the throat). He has done some of those operations. I asked if he’s done the extra-oral approach to remove the whole styloid, but he said that’s a very specialised head/neck surgeon’s job, a major operation & hardly any surgeon does it. (As we know from feedback on here & your doctor list speaks for itself). He asked me what i wanted to do, I said I’m not keen to have the intra-oral you are offering & not confident it would solve the whole problem anyway & need to know more about the rest of it. Not sure why the neuro seems to think ENT are dealing with the IJV compression assessment…
Has anyone else been in this same situation? Should I be having an MRV to study the IJV stenosis better? It is on my right side, which is the non-dominant jugular, so perhaps that isn’t a big deal?
Also don’t know if there’s cervical instability. For a few years have had difficulty holding the head up for long, chronically uncomfortable and have to lean it, hold it, squeeze it, change posture, never right & throat gets very restricted & tight & feel very weak, sick & as if may pass out etc. I do neck physio stretches, but it continues. The Neuro commented that things structurally look fine in the neck, but makes you wonder if it’s been looked at properly (or perhaps not able to properly tell in one head position), as the ES & IJV weren’t picked up & only acknowledged when I pointed them out.
So, definitely ES & some IJV compression (both agreed by Docs), though not sure yet if that IJV is ‘normal’ and nothing to worry about - and also wondering if the Right hyoid horn is intermittently poking into the Common Carotid or something around there & if there is any CC1/2 instability, or similar. At least the MRA should be helpful with some of that.
Really glad things have at least progressed now and hope everyone else is making good progress.
Very grateful for any comment/ personal experience/ answers/ advice. Thank you very much. Sorry for the long post.
P.S. some Right side IJV images below:
@Blodyn - You have done a good job of arguing your case & presenting images to support your self-diagnosis and taking a stand against having surgery w/ a surgeon who will only “snip the tip” off your styloid & not deal w/ the vascular compression. Good work describing why the external (transcervical) approach is better/necessary in your case!
A digital motion x-ray (DMX) is the type of scan used to diagnose CCI. It is possible the issue with holding your head up for an extended period causing problems is due to nerve/vascular compression as opposed to CCI, however, there’s no way to know for sure unless you have a DMX or an upright MRI, or unless a styloidectomy/IJV decompression on the right produces reduced symptoms. Mr. Hughes does the styloidectomies but w/ the obvious amount your C1 is contributing to the compression, you’d most likely need C1 to also be shaved which would require a second surgery done by Mr. Timothy.
@PatientD has discussed these topics at length in her posts. Here is the link to one where she mentions upright MR in London & Manchester.
Hi, a new option maybe.
Mr Paraj Sayal- London practices, includes NHS so good.
Fusion, spine, skull base surgery. Good patient reviews.
I sm seeing him on Thursday. Will try brief update.
Still in hospital, hence brevity, D
Thank you very much, Isaiah. Appreciate your helpful comments. I take your points about possible vessel compression or CC1 etc. & DMX scan.
As it stands now, the ES & IJV compression are acknowledged, but not well-informed course of action - & any artery issue should be picked up in the MRA scan next week.
I’m not in a position to be able to have an operation (and terrified at the thought), but would like proper opinion on whether - the ES, the IJV squashing by the C1 process & styloid, occasional stabbing in neck by possible hyoid horn - are things I should be worried about, or things that are ‘safe’ enough to live with, despite all the adverse effects.
Re. the carotid (or other possible artery) situation, some effects I have are definitely when the head moves in certain ways (so intermittent) and always with slight exertion where the throat restricts so much & associated effects. Not sure if this MRA will pick up the nature of these issues. As you and PatientD mention, scans aren’t really done in different positions (apart from that specialised upright one), so how are such things determined…
ENT, the Neuro, nor Neuroradiologist have acknowledged, but not appraised the IJV compression or mentioned further investigation, so after this MRA, I’ll have to ask about that & the C1 process via the helpful Neuro, but it’s out of his field.
Realise we’re not doctors on here, but just in your opinion, what do you think of the IJV compression in the images? does it looks like a standard, common liveable situation, or something that would definitely need attention as is risky? You mention a C1 shave too, that sounds a really big deal, but would it be necessary (if high risk situation), or other non-invasive things like physio could help. Feeling some horror if things are risky & needing a styloidectomy, plus C1 shave to help the IJV, plus something done with the hyoid horn & who knows arterially. Basically, if nothing urgently high risk, there’s no way I’d have an op in the near future (and can’t and wouldn’t because of my domestic situation).
Thank you, Isiaiah. (Hope your move etc. all gone well)
I’m glad that your doctors have acknowledged the styloids, you’ve done well for educating and advocating for yourself ! It’s a tricky one Blodyn ; you sound like you had symptoms of IJV compression leading to high intracranial pressure a while back, but sounds like it’s improved now? If just one side is compressed & that’s your non dominant side as you mentioned, then clearly at the moment your body is managing…I had surgery for my worst side first, I had bilateral IJV compression, & just with the first surgery I had a good improvement with symptoms, & that would have been manageable. I did have the 2nd side done though while I was lucky enough to find a good surgeon, and also because the idea of a 4cm spike squashing my IJV really worried me!
So it’s a personal decision, your body is obviously coping now, but it sounds as if the potential ICA compression is perhaps more of a worry to leave. The collapsing spells you had & tachychardia could well have been irritation or compression of the ICA. I guess it’s probably best to see what the MRA shows & then decide?
It’s hard from the images you’ve posted to see if the hyoid is playing a part in this, maybe that will be clearer from the MRA…
The CCI again is a tricky one to think about- we’ve had some members who’ve had surgery & found that their instability is worse, others have had no effects after surgery.
Surgery is always a difficult decision balancing the risks of surgery against the risks of leaving the styloid in; I guess that’s possibly a discussion you need to have with the Neuro after the MRA, it’s hard for us to say. Would you be able to have surgery if you felt there was a significant risk, you mention your difficult situation?
If your symptoms are tolerable as they are, then there is no reason to have surgery at this time, @Blodyn, UNLESS your MRA shows carotid compression or compromise by your styloid or something else. IJV compression can cause very miserable symptoms, but it is not life threatening like ICA compression/irritation can be as on rare occasions a stroke can occur if the ICA problem is left untreated.
CTs of all varieties can be done dynamically, but sadly, MRIs cannot. I hope & pray yours shows whether or not you have a problem w/ your carotid caused by your styloid(s) so you can get a more complete diagnosis & path forward.
Many thanks, Jules. You and this forum have been (and are) an enormous help in so many ways and can’t thank you enough.
Yes, was also wondering if the extreme symptoms I had were more to do with the carotid artery - ICA compression as you suggest - or part-dissection, which can apparently heal itself sometimes.
Won’t list everything, but the very constricted throat all the time, thick back tongue & down, neck/head constant discomfort & trouble holding head up and never get it comfortable & feeling something in the throat (as well as the styloid end in it) - with any slight exertion, the constricted throat gets even worse with lack of breath, dry cough fits & feeling horrid, weak legs, light very funny head, (even just bending down, or sweeping the floor, or carrying shopping). It feels as if some vessel or vessels are being pressed on in the neck, as if when my heart rate goes up with some exertion the blood vessel/s widen for increased blood flow but then being obstructed, hence restricting oxygen maybe. Doesn’t sound like an MRA picks up those dynamic differences when the heart rate is up & at different angles. But, yes, wait and see.
Re. the hyoid. I only put up some images of the IJV compression, not the hyoid. I’ve been looking at the scans again to try and seen what the occasional stabbing in my neck can be when moving the head and catching me by surprise. As it’s mainly just to the right of the centre part of the hyoid, where I feel the main pulse in the neck, it must be something like the hyoid horn pushing into nerves/vessels in the neck there (as my right styloid is poking into the throat cavity by the tonsil and not a bit further down where the stab comes).
Thanks for the feedback too on CC1. Don’t like the sound of that at all, poor people who’ve ended up worse. Bit of an unknown, so with somehow have to get it checked out & hope it’s not.
Although very grateful for the action that is happening now, it’s quite clear there aren’t doctors experienced and knowledgeable in all these things in our area. I did email one on your list to ask about a remote/virtual assessment of my scans & background &they said he does do virtual consultations, but then this MRA appt came up, so I haven’t yet approached him, but may do in future.
It’s a big worry contemplating the situation if I need to have surgery, even more of a worry if there is more than one thing going on that needs more than one surgery. I want to avoid it in any way possible, as it would mean going far away from here for a little while & recovery time. As things stand, I can’t go away for a day, nor night as caring for my seriously chronically ill partner full time & not at all a situation where others could come and do all the particular things (& would also worry sick about him if I was away!). So, basically, ideally need expert opinion on all of it, which I haven’t had yet, in order to discuss risks & options.
With the IJV compression, you make sense, but is it a condition that can worsen quickly & be high risk? or perhaps been like it for many years after whiplash, say, & won’t do much else, or a gradual process where one would have slowly worsening symptoms? I’ll look up your situation on your posts again! what symptoms you had, how bad they were etc. with you. Oh - just reading Isaiah’s comment come in - she makes a great point about this & IJV/ICA.
Thanks so much again, Jules.
@Blodyn, I’m very sorry for your situation at home. What a blessing you are to your partner. Chronic illness is terribly difficult for both the person experiencing it & the caregiver. It seems maybe you should see if there is any way you could get a respite care provider to give you a break so you can take care of yourself because if you end up with a chronic condition, too, that won’t help either of you.
Great points, thanks Isaiah. That’s a huge help saying about IJV compression not being life threatening, a relief. And at least the MRA will help with the caroid side of things, though as you mention doesn’t measure dynamically, which could mean the mechanics of it all aren’t seen. I rambled on in answering Jules below, about such a constricted throat & not being able to exert myself even slightly as makes things even worse, breathless, head, weak, ill etc, feeling as if vessels are being impinged (heart & lungs are OK - it’s all in the throatneck/head). It’s having a huge restricting effect on my life (with some other health issues too) & not at all healthy doing nothing aerobic, big weight gain and so on & makes life a huge struggle. Chronic discomfort all the time and neck/throat pain at different times on top of this over-riding constriction & voicebox aching (& various other health issues going on), BUT, thankfully, not intolerable pain like some folk on this forum, but still hard to accept carrying on the way I am for the rest of life. So the same questions remain - who can assess properly? what is causing what? what can be done about it? what are the risks? should or shouldn’t? blah blah. Sorry - lost it now! Many thanks again, Isaiah.
We are here for you Blodyn, even when you lose it. That’s part of the purpose of this forum - being able to “dump” when things are tough. Everyone here understands. Besides that your post was mild compared to some we’ve had. 
Though I can’t say for sure what’s causing the feeling that your throat is closing, I can say I had that sensation for a few weeks after my ES surgery which I attributed to post op swelling. I’m not sure it was so much swelling as a nerve sensation. The glossopharyngeal nerve which is often irritated by ES can cause very uncomfy feelings in the throat. The vagus nerve is the one that makes it hurt to talk (voicebox aching) and can affect breathing, too, so some of the symptoms that feel vascular may be nerve related instead which is sort of good news.
I am sorry for your restrictive lifestyle & for the negative changes you feel it’s made in your life. I know how difficult it is to care for a very sick person. I’ve done that in the past, but not for the long-term like you are. It requires much self sacrifice which is all the more reason for you to consider getting a respite care giver, again, so you can have some time away to take care of your self - even a couple of hours once a week would be very helpful for you. I’m off my soapbox now, but I do speak from experience in this area.
Thank you again, you’re so supportive to everyone. Appreciated 
Yes, feel very grateful and fortunate when reading some of the other posts!
Thanks for offering suggestions. I can’t detail it, but because of the nature of the particular personal needs of my partner, optimising things & the way we live, it’s not at all suitable to respite care (& would also be terrified something may happen when I’m not there). But, you’re right in theory. I am able to get out and about OK for a couple of hours here and there, so that’s great & we’re so lucky living in a beautiful area on the farm. Our main essential ‘vice’ is Humour! also have an auto-immune disease (RA) which has been appalling when drugs stop working & the inflammation is out of control, but fortunately been on a new drug nearly 3 years (I’d call it a Miracle drug, even though it’s nasty & risky 
) so although some damage done, incredibly grateful for that controlling the RA - so could be a hell of a lot worse!
Huge thanks again, Isaiah X
P.S. didn’t mean to go into more personal situation stuff!
Your situation sounds so difficult Blodyn, I’m so sorry that you’re having all these health issues while needing to concentrate on caring for your partner! It’s good that you can keep some humour, would be impossible without it!
I wish I could give you a definite answer about the risk ES is for you as well as potential CCI & hyoid issues, or recommend the go-to doctor to get these answers, but unfortunately although we have good doctors on our list one wouldn’t be able to cover all 3…Mr Axon is excellent for ES & IJV compression, and does do remote consults, but wouldn’t be able to look at the hyoid for you I don’t think. Mr Higgins also in Cambridge works with Mr Axon at Addenbrooks, but I think both are being restricted to what surgeries they can do on the NHS. Mr Hughes in London has done quite a few surgeries & I think would look at the hyoid bone too as he’s offered to trim the hyoid for a members, but I’m not sure that he’s as knowledgeable about vascular ES. And Mr Timothy in Leeds is more knowledgeable about CCI & does C1 shaves but I don’t think does the ES surgery routinely. So if they could all get together that would cover all bases!
Some members (& I’ve seen some posts on an AI disease forum) have had good results damping down inflammation with the anti-inflammatory diet, I don’t know whether that might help at all for you, I do think ES causes alot of inflammation & that might not help with your RA- but I have to say that the diet sounds utterly miserable! I eat keto which definitely helps some of my aches & pains…
Re the IJV compression I had- I was managing the nerve pain from ES okay, but started doing alot of cycling, & the neck position with that I think caused a prolapsed disc C5-C6. My own theory is that this was enough to shift the structures in the neck & cause the compression, & maybe doing the extra exercise increased the head pressure too. I did start to feel really ill with that before surgery. So I don’t think it was a normal progression of ES causing the vascular symptoms, & I don’t think it necessarily worsens with everyone. But our bodies do lose the elasticity of connective tissue as we age too which is why some get worse.
I’m glad that you feel the forum has been a help; I wish we could solve everyone’s issues but we can’t, always happy to listen though. Will pray for your symptoms to ease & sending you a hug
to HUMOR!! It’s said, “Laughter is the best medicine”. I can’t agree more. It produces endorphins just like exercising & endorphins are our natural “happy pills”. Here’s to many good laughs in the weeks, months & years to come, @Blodyn. Good for you for finding such a healthy way to cope! 
Hoping the little laugh emoji will be contagious for you tonight!
HI Jules, that’s all ever so helpful, huge thanks. You’ve helped hugely re. the doctors specialities ad the imperfect situations so many on this forum have when we can’t get definitive answers of causes and solutions and so on. Thanks also for mentioning diet and inflammation. Yes, hard, but thankfully pretty good on that for some time now (even though the drug is doing a sterling job on the RA, though is immuno-suppressing which causes other stuff).
Sorry to hear of your prolapsed disc situation that you thik was brought on from perhaps more cycling & angle of the head. Makes sense what you imply about head/neck posture etc being contributory at least to such compressions and that with age things can worsen as tissue deteriorates etc.
Honestly, you and Isaiah in particular (& other helpful commentors) are really marvellous and making a massive difference to me and others on this forum. Thanks you so mcuh for your help, best wishes & kindness. Really hope things are going as well as they can for you too. Go Well 
(no doubt back again soon!)
It truly is!
Huge thanks for everything, Isaiah
You’re very welcome! My surgery made a huge difference to how I feel, but haven’t been able to get back into cycling as I’d hoped, it’s too much pressure on the neck…able to do other things though, and nice to not feel drunk all the time so I am very grateful!
Pity about the cycling, but otherwise sounds like a pretty excellent result! Long may you keep good health. Many thanks again (no doubt more exchanges to come on here at some stage!)