Still here, still with the same swallowing issues, looks like I may have CCI, likely ruptured transverse ligament. Severe Jugular vein compression

Hi

Yes it is Jonathan hughes ENT who helped me. I had a lot of delay getting referral to his NHS practice at UCLH so had to go private at Cleveland clinic.

My fusion with Mr T has gone very well. I felt the difference from day 1 of fusion and my C1 stability has been fine ever since surgery. Head rotation at C1 reduces by about 50% but instability physio will show you how to turn more using lower neck below C1.

If you have not seen Newport Chiropractic may be worth trying while you wait for surgery.

After fusion I still had both my JVs compressed so still had that problem to solve and so still felt unwell. My T trimmed my C1 for me. Then Mr Hughes did styloids. In recovery from latest op now.

Queens Sq say patients do manage with just one JV but my brain clearly wants to use both JVs.

Based on my diagnostic scans the JV compression meant JV tip of dens was only 1 or 2mm & Queens Sq could not access right side of brain during first Venogram. But after Surgery to decompress they could as JVs were 5 &6 mm. await new scan later this year to recheck JV. So if your JV is almost/fully compressed on one side that may improve & brain may expand your JV if compression is removed.

Hope you get help soon. D

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While you wait maybe a Aspen Vista collar may help with instability, but needs proper fitting. Mine was fitted by Anna at a physiocure in Leeds (instability expert that works with mr T). It’s used fir patients who break their cervical spines. Anna has her instability patients wear it 1 hour end of day as applies traction to neck which helps. She offers other help too I expect. Other option is instability physio at Wellington in London. Collar May be tricky if affects compression but May be worth trying. D

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One warning. Mr T does not treat patients who are cared for by Barcelona team. So you must decide who to use. If you do see Mr T do not discuss Barcelona with him. It’s a policy decision he took after a difficult revision surgery on Barcelona patient. D

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Thank you so much for all of the useful info.

Yes, I sensed Dr T wasn’t keen on the Barcelona clinic from what I’d heard.

I had booked in to see Dr Hughes but then cancelled when I found out I have AAI. I’ve seen so many ENTs and none have come up with anything and I didn’t have any scan showing IJV compression so I kind of wanted to keep Hughes as someone I see once I found the compression.

It’s all so complicated because my throat cartilage gets caught when I swallow, it can’t move upward freely but then I also have AAI so is it AAI creating a lack of space in the throat or is it unrelated. Hard to know what to do first. At times I think if there’s IJV compression by something if they can be found I might consider that doing that first to see how much relief it would give me and possibly enough things to be a bit more bearable while trying less invasive stuff for the CCI/AAI like stem cells / PICL.

Did you have elongated styloids? Is this why Hughes helped? As I don’t have elongated styloids from what I’m told but I have problems in that area and the swallowing issue. I just don’t want to go to Hughes with no evidence like I have the others as they just fob we off. Equally I can literally feel my hyoid is catching on that back right had side, by the vertebrae and where the IJV, Carotid etc would be.

I wonder if Hughes and Timothy would every work together re the complexity of it being a CCI issue and a swallowing/hyoid issue. Have they liaised at all re your case?

Yes, I’ve spoke to Newport chiro. Considering AO once I get some more clarification on this vascular stuff.

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Thank you so much. Your support and prayers mean a great deal to me.

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Hi, knowing what to do first is always a tricky decision.

So in my case I spent most of 2021 in Shropshire with Newport Chiro seeing if could help fix me. I stayed in some quiet rural places & I learnt that my misalignments were not movement related (eg ligaments) but probably pressure related as they happened when lying still & had a “pop sound”. After learning about IJV compression I think my body could not cope with high pressure that caused in my head.

I did fusion first & for me that was like putting stable foundation back in place. But I think it increased blood flow to head & pressure remained bad. That said I did not misalign at C1/C2 anymore, which was a huge help.

Mr Hughes & Mr timothy know about each other as I have spoken to them about the other. But I do not know if they have spoken. From patient viewpoint if you have JV compression then having any decompression in one (maybe combined) operation makes sense. Having 4 separate neck operations, as I did, just due to how medics divide specialisms is madness. So ENT do styloids & Neurosurgeons do C1 trim. No reason can’t both be in theatre together except they are in different cities/hospitals.

Will reread your message to check if more can add. D

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I think that Mr Hughes would look at the hyoid if that’s any help- if I remember right @Hema has seen him privately and he was willing to do hyoid surgery. She’s currently deciding what to do with surgery…

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Thanks. Yes, I know Hema.

The issue is, no ent has ever really been able to see an issue with my hyoid on the scans. Despite it clearly catching on something when I swallow and even just moving the hyoid side to side it catches on what must be the vertebrae at the back. My concern is again, if I have the same scans, Hughes may not be able to find any target to treat either. Unless he’s more willing than others to do surgery/explore based on symptoms and feeling my swallow and the clicking of my swallow in person rather than only being willing to do anything if it’s clearly seen on scans. I’ve had CT, 3 x mri, 2 x video fluoroscopy all showing some vague abnormalities but no obvious cause for the swallowing issue. I haven’t had CT angiogram and am considering this but just trying to work out if it’s worth while as I don’t want yet more radiation if it’s unlikely to show the compression of the right IJV if that vein is so closed off that no blood/contrast is going to get through the vein and show up on the scan.

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On Mr Hughes and imaging topic.

Most UK ENTs Do not know about vascular Eagle syndrome compressing the JV. Most ENT do not remove styloid to skull base because it is regarded as very high risk surgery and they are mostly risk averse. Mr Hughes can remove to skull base but it took me some time to persuade him to do so. My styloid bones Were not long and it was the gap/angle of C1/styloid that compressed JV, not styloid bone length. But my styloid ligaments had calcification. Also Axon can remove to skull base.

On imaging the reports are often poor and miss vital facts out. It all depends on the knowledge of the radiographer. My compression was only found by Mr T, the radiologist missed it. Mr T is very good at reviewing images himself not just relying on report & he shows you images on screen during consult. He even took screenshots for me on my phone. They are very helpful when meeting other medics.

Mr Nick Higgins at Cambridge is highly regarded radiologist but I have never seen him despite 2 years on NHS wait list. Queens Sq have several experienced interventional radiologists in NHS and available privately at more reasonable cost than most private hospitals. I first saw Dr Peter Cowley there for first Venogram of brain. So if you are going to get more imaging it’s got to be with right team. Maybe you could ask them for a second opinion on your existing scans?

I am sorry doctors keep failing to identify your issues clearly for you. Most of us have had this happen too. It’s tough when you are very I’ll and medics don’t help you.

If you get GP referrals ask for specific referral to Mr Hughes at UCLH and Mr Watkins at Queens Sq UCLH, otherwise you will just get assigned to first available person who may not know about CCI/VES.

My CCI did not affect my swallowing if that helps, but we are all differently affected.

I have no medic background but even so can see on 2 images posted that one side is very dominant & one is not working & that is not normal and must have a cause.

Take care d

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Mr T used CT with rotation to identify my JV compressions & CCI at London Bridge hospital. D

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I just booked to see Mr T mid Dec. told last slot b4 Jan. As Mr T can help diagnose “compression” stuff, donC1 trim & CCI I’d book slot now if you can. You can always cancel it if you decide you don’t need it. D

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Thanks. Yes, his secretary came back to me. I’m booked in for a couple months time.

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I’m in the same situation, CCI transfers and alar ligaments sprains, eagles, Tonsillar ectopia, reduced csf flow. But my first mrv shows only slight jugular compression. Fingers crossed the ctva shows something. I also feel like my right side has given up on me. Throat constrictions, swallowing issues, voice, jabbing, hang ups. … very frustrating and very uncomfortable, very concerning. Hoping you find answers - you’re not alone.

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For those that have seen Jonathon Hughes. Did he have to see something definitive on your scans for him to consider treatment/surgery? I ask as despite me being able to obviously demonstrate in person that catching/clicking on the cartilage in my throat and the back right of my hyoid rubbing against bone or some other hard structure, for some baffling reason nobody has been able to see this on my scans. The only thing that can obviously be seen is bolus/food shooting to the left side of throat when swallowing (probably because the right side is so restricted in movement.

Is J Hughes the type to take me demonstrating this stuff in person by having him feel/listen to my throat as enough for him to consider surgery or is he going to insist it’s seen on a scan? I’m concerned as I rang to book an appt with him earlier and his secretary essentially said he doesn’t look at scans, he just goes by the radiographers report. If that’s the case they are just going to state it’s normal or they are unsure of the cause of my issues. Is that going to leave me at a dead end with Hughes or is he one thats more likely do agree to investigate surgically based on my symptoms?

@PatientD @Jules @Isaiah_40_31 @Leah @lilwider

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Hi. You ask a tricky question. These are my thoughts based on my experience of Mr hughes.

He is an expert surgeon & a kind man who is concerned about his patients quality of life. You need to strongly advocate what effect your health problem is having on your life. He will physically examine you if you ask him to look at your neck problems close up. He has physically examined me in past visits when needed. My examples were explaining to him impact of complete inability to turn my head due to styloid compression. Also impact of higher brain pressures on right side of brain (but I did have Venogram pressure results to support this).

I find almost all medics rely on scan reports by radiologists with rare exceptions. This is a big problem as the radiology reports are not great. After I showed Me Hughes screenshot of styloid remnant I needed removed in revision surgery he told me he would look at the scans himself. Which I believe he did.

With high risk surgery (eg. Removal to skull base) they all want support to justify surgery. In my case he wanted consultant at Queens Sq to agree surgery was supported by him. That took a long time & delayed things for me.

So I am unsure on answer to your question, but if you do go then be prepared to advocate your case & explain impact on you. Good luck. D

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I’ve not seen him, so can’t answer your question, but @Hema has seen him and he was prepared to do hyoid surgery for her. She’s still thinking about surgery, so if she doesn’t see this you could send her a pm. Good luck!

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Hi @Callmestar1 . I’m new here and i hope you don’t mind me commenting. I also deal with the throat clicking, day in, day out. Going on three months now, so i totally understand your frustration. It is never ending, painful, and extremely disconcerting.
As yet, i have no solution from doctors or ENTs, so unfortunately can only offer my support at this stage. I have been told i have elongated hyoid bones, but have also been told SO many different things by different doctors. Two have told me it’s muscle tension due to anxiety or silent reflux. So i am on medication for both. My ENT also suggested anxiety medication (though i did have a breakdown in his office). I am working with a physio who specialises in myofascial release to see if that will alleviate the discomfort. I’m in discussion with speech pathologists to work on swallowing techniques and hyoid bone exercises.
I agree that the doctors don’t have much time for you. I think my ENT was about 6 minutes total. They push too hard and don’t feel the click. Then others look at you like you’re crazy because they’ve never heard of it. So it’s off for a second opinion i go…
I just wanted to say that i feel your pain. It is awful, and I’m sorry that you are going through it. I am in Australia, so please know that i am wishing you well in your quest for answers, from across the other side of the globe.

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I tend to agree that it might be due to the muscle tension, as spasmed/short muscles can firmly push the hyoid bone backwards towards the spinal column (look for neck musculature diagrams I posted earlier on this forum). However, there might be many more causes of muscle spasm that than reflux, anxiety, or stress. Among the others, postural problems, excessive use of smartphone/laptop, and incorrect exercising (e.g. chin ups/pull ups).

Source: I used to have mild to moderate occasional clicking. My neck muscles used to be hard like rock, as I couldn’t move my neck without pain due to the long styloids. Styloidectomy helped to break this cycle and now I have been able to exercise neck muscles, so they are much more relaxed, longer, and softer (far from perfect though), and clicking is gone 100%.

Obviously, your situation might be different.

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You are quite correct @vdm ! I forgot to add in my advanced TMD on that side. Something that the ENT didn’t tell me… So helpful of him.

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@Callmestar1, I just sent you a PM with contacts of one specialist in the UK.

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