I used to post here a while back. I’m not better. No one has ever really taken my symptoms seriously. Maybe i’m finally getting somewhere now but it seems like one big mess. It looks like I may have CCI/AAI with a ruptured/damaged transverse and alar ligaments at C1/C2. I remain with the swallowing mechanism feeling completely blocked/stuck on the upward swallow movement with it not being able to move or just clicking/clunking getting caught against something. I’ve always felt the right side of my neck/throat feels more constricted and a recent MRV/MRA scan looks light my right jugular vein is basically invisible. It also looks like the right transverse sinus has nothing going through it. I don’t know if this could be from some compression in the neck meaning that side just gradually stopped being used by the body. Not sure if something like this is even fixable but i’m hoping I can finally find some way forward and perhaps find something compressing the jugular vein that can be treated and perhaps relieve some of my symptoms.
Not even sure why i’m posting. I’m lost. Pics attached.
I am unable at this time to go back and look and see if your scans are out there and/or if you had surgery. Just wanted to say I am so sorry, I know this is a significant amount of suffering many, many have been through. And getting someone’s attention when you’re suffering and you’re already feeling defeated, it’s especially difficult.
I think all of us can look back from the beginning, and say what what do we wish we would’ve known when we figured this out. And one thing that I’m coming to the conclusion is because I have whiplash injuries on my neck, and this just may be a layered process of getting back to some semblance of normalcy.
For the first time in my life, I have found myself looking at people whose necks are working perfectly and I’m so envious. And most of them have no idea what our lives are like even those close to us.
Hoping, hoping a path becomes clear.
Well done in not giving up, it’s been so hard & frustrating for you I know…I’m not very knowledgeable with reading the scans, so I can’t comment, hopefully others can have a look for you.
I think @PatientD has posted info about CCI practitioners she’s seen in the UK, so that might be a route for you to explore if you haven’t already; I’ve had a quick search but I couldn’t find it. She’s just had surgery but hopefully she might be able to point you in the right direction?
You’ve been on my mind recently as I know you’re still suffering, I am praying for you, hugd=s and prayers
Hi, it’s patient D. Sorry you are struggling, most of us do.
So as Jules said I had CCI & damage to Alar & cruciform ligaments. Maybe due to severe fall as a child. For a while Atlas Orthagonal corrections at Newport Chiropractic helped me. But once I was unable to hold corrections I had spinal C1/C2 fusion with Mr Timothy at Nuffield Leeds but fusion is still controversial so not sure how many patients he fuses now. There is fusion place in Barcelona but EDS patients with instability report mixed results I think (not certain).
I had JV compression too due to C1 & styloid. Mr Timothy diagnosed this for me. He can trim C1 if that is causing compression. But if styloid then that is ENt surgeon & I used Mr Hughes at Cleveland Clinic London. Kr Hughes has NHS practice at UCLH. Sadly Mr T is private only.
From scans images you shared can see one side is much more dominant than other.
Ask your GP to refer you to Queens Sq in London for Neuro help urgently. They have experts in imaging who can help on NHS. May be worth seeing mr Lawrence Watkins for private consult there at start as he has helped me with diagnostics & consult cost is modest compared to normal £.
Cambridge has team of mr Higgins (radiologist) & Axon, but tbh they have given me no real help for last 2 years. I think they have helped some members.
Hope that helps. Take care. D
Thank you @PatientD . Is that Jonathan Hughes you were saying is available on the NHS? I have heard of him. He’s one of the few ENTs I haven’t seen.
How was the fusion experience with Dr Timothy and how are you doing now? I am aware of him and have spoken to his secretary. It’s like a 2.5 month wait for a consultation.
The whole vascular thing just seems to have complicated things further. I always suspected there was compressing on the right side of the neck of the IJV etc but it looks there’s also no blood in the IJV and transverse sinus all the way up to the brain. So that’s confused me and seems more than it just being compressed in the neck.
Like you I’ve been told my alar ligament is damaged. Also supposedly my Transverse ligament is ruptured. I don’t know if anyone can say for sure given these ligaments are hard to see on scans. But if it is fully ruptured typically the only solution would be fusion. have a very acute CXA though at about 125 so again it points to CCI or AAI.
I’m seeing the Barcelona neurosurgeon online next week. So will see what he says. But since I’ve seen that vascular issue and given how unwell I feel I’m kind of desperate to find some help in the UK asap.
Very keen to hear your experience and how you are doing since fusion with JT as it seems he’s one of our only hopes here in the UK.
Thank you Jules. Your messages always feel truly empathetic and caring which helps.
@Callmestar1 - Please never question why you posted here. I hope it’s because you know we’re always here for you! You’ve been searching for answers for a long time & have been turned away & doubted. You’ve listened to our advice & suggestions & taken those that made sense in your situation to heart.
I’m very sorry to read that your symptoms are getting worse & you still haven’t found help. The information @PatientD gave you is the best for your situation. It is Dr. Jonathan Hughes she was referring to. I hope your future medical appointments prove very fruitful & you can see a light at the end of this tunnel you’ve been walking down.
I’ll also be praying for you.
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
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
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
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.
Thank you so much. Your support and prayers mean a great deal to me.
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
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…
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.
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
Mr T used CT with rotation to identify my JV compressions & CCI at London Bridge hospital. D
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
Thanks. Yes, his secretary came back to me. I’m booked in for a couple months time.
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.