Once again @KoolDude , thank you for your immense efforts and time given to studying my imaging. Whilst I do seem to have a lot of the SVCS symptoms, my swelling is only in my hands and feet and not any other part of my body (no facial, body, arm etc. swelling). I can see the importance of having a chest MRI so will make contact with the referring consultant and request this is included in my upcoming session.
As I’ve mentioned previously, despite having symptoms for many years, I had an episode in February 2018 that changed my life overnight. When I was taken to A&E, their original thought, because of neck/head/throat pain, was that I had an aortic aneuryism so I had an Aortic CT, following which, I was told nothing was wrong other than I suffered from migraine and my then chest pain was anxiety. Subsequently, a month later I was still unwell so underwent an Aortic Arch and Carotids CT. Again, I was told everything was normal other than I had migraine and asymmetrical tonsils that should be removed (they were in March 2019). If you have the time, and feel they may help you to see anything further, I would, of course, be happy to have your feedback. Unfortunately, I was trying to upload both sets of imaging to Dicom library but have only been able to add the latter study. The quality may be poor as they are from 2018 and imaging has improved so much in recent years.
I do appreciate this is the ES forum and I’m taking up space with what now appears not to be ES – sincere apologies but I do hope that @KoolDude’s observations serve to remind us that medical professionals ignore far too much when reviewing imaging!
@NRuflove I have quickly looked at the 2018 scan which contained the area of interest. I have found what suspiciously appears to be clotting (Red Arrow) in Intersection of right IJV, right brachiocephalic vein and Vena Cava. Since this CT was done mainly for Aorta, the CTA was done in arterial phase so veins are not clearly seen. Venogram CT or CTV shows veins better and would have shown the suspected clotting better. So we need Chest CTV to confirm the clotting here. I also found what appears to be clotting in juncture of the Superior Vena Cava (red arrow) & left Brachiocephalic Vein (blue arrow). The images are shown below. The bright intensity on the right Subclavian Vein (Blue arrow) is due to the contrast since the contrast was injected in the right arm vein, it goes through Subclavian Vein so that is the artifact of the brightness you seeing.
All of these suspicions need to be confirmed with new CTV of the chest. If true, this could be your problem.
There is also what suspiciously looks like clot in juncture of the Superior Vena Cava (red arrow) & left Brachiocephalic Vein (blue arrow). The darker areas pointed by the red arrow does appear to be clotting. This needs to be confirmed with additional venogram in the chest.
Here is the internet image to show you where the clot is suspected to be (Black painted area - Intersection of right right IJV, brachiocephalic vein and Vena Cava )
To me it looks like the ‘o’ ring has gone in the skutterbox.
One can clearly see this at the SUV / HGV /RTe inter sections.
Collect $200 or go to jail😂
Welcome to the long term suffering club where Gp’s and surgeons pass you around like an out of date property investment magazine.
Where you spend a small fortune having tests done and you still don’t have answers
Where you spend more time in waiting rooms then you do in your own living room
Where you are told what your symptoms are or are not, of where the pain isn’t but is,
And how your insurance policies don’t cover this treatment
For me it is better to suffer in silence, I’ve given up seeking help, looking for answers and for reasons why
The system has me beaten me into quiet submission, I am the perfect person with a rare illness, taking his pills and not bothering anyone
Looking for help in Ireland is like walking the surrounding mountains and forests looking for the leprechaun
I have a rest BPM of 144 and I feel like my head will explode and my voice has gone.
If I wake up tomorrow it will a bonus
@NRuflove If you are wondering which series I used in the first posting, I used the axial series that has the most slices (396 slices) to cover as much body part as that shows the depth of the clot. But if you are using the Coronal series with 52 slices, make sure you correct the window 859 and Level to 204 (see the blue circle at bottom left corner in the first image) in order to see the clot better otherwise you will be blinded by the brightness of contrast artifact.
Here is the clot on the 52 slice Coronal. You can see the clot in right Subclavian Vein (SC)/right Brachiocephalic Vein (BC) and Superior Vena Cava intersection (SVC) (Red arrow)
My question is how can this be missed but then I have seen far too many cases where this sort of mistake is made by Radiologist. I am now more confident that you have a variant of Superior Vena Cava Syndrome induced by thrombosis (not compression by tumor) in SVC, in BCs (right and left) and right SV. We need confirmation with new chest CTV.
@KoolDude I mean, in some cases it might look like a clot while being just a benign artefact, as the vessel in question goes along the heavily contrast-highlighted path. The definite answer might be ultrasound doppler scan if it can reach that low.
@KoolDude For a novice, this is a huge amount to take in but thank you for explanations and screenshots. I’m going to print everything out and have to hand for when I need it.
I’m still baffled by my severe pain on the left side of my neck (just below my ear/skull) that had originally been diagnosed as ES. Mr Axon said it was my C1 transverse process, Mr Hughes said it was muscle and a previous consultant said it was my styloid process. I think I’m getting the gist that whoever I see, I’ll get a different answer!
When I’m through the next few weeks, I’ll visit the forum to update you with results etc.
Yes, You can show the screenshots to doctors along with the high pressure readings. Demand another contrast CT Venogram or MRV on the chest. The reason why you do not have a large pressure gradient is because you do not have any meaningful compression of the major veins and the high pressure readings could potentially be explained in part by the clots causing a partial blockage and backup of the blood from the chest to all the way to the brain. So you know the reason why I have higher pressure gradient is because there is compression of my jugular vein around C1 which accounts for 3 mm HG out of the 7 mm HG (BHG). So in your case, not having high pressure gradient does not mean you do not have a venous issue.
My answer here is I really do not know but that does not mean there is no plausible explanation of the pain around that area. The pain could stem from any number of things as that area is nerve rich (many nerves exit the skull around that area). Dilated collateral veins irritating nerves by compressing them, tight muscles compressing dilated veins which in turn compress nerves. It could also be caused rotated C1 compressing nerves although your C1 is slightly tilted to the right, not left, so not sure it is the cause here. So as you can see it is hard to pinpoint what could cause this, I have looked at that area (circled yellow in the images below) and found that your left digastric muscle (red arrow) looks bit tight and slightly bigger than your right one and is near to a dilated Condylar Confluence Veins (light blue arrow) which are basically Merged Collateral veins at the base of the skull. The right Condylar Veins appear smaller in size. The styloids (blue arrows) do not appear to be compressing Jugular Veins (black arrow) but digastric muscle (red arrow) appears to be pushing jugular vein near the C1. So I think it could be a combination of things, tight muscle, engorged veins irritating nerves…etc. Have you ever taken muscle relaxer. May be you can try to do that and see if you feel any relief. There is also cream version of Baclofen (muscle relaxer) which you can put in that area. You could also try acupuncture…etc. This will be trial and error thing to find out what is really causing this pain but I would say do not despair keep trying.
Here is your left digastric muscle (red arrow) to show where it is in relation to C1 (green arrow). Perhaps, you could try to loosen it a bit or apply muscle relaxer or try Botox on it.
Thank you for looking at this and giving so much details. Unfortunately, I’ve tried muscle relaxants (pills and creams), heat pads, ice pads, acupuncture, botox, GON blocks, PENS treatment etc. There is a hard, bony lump protruding (presumed to be my C1) and I can feel it touching something inside when I move, cough, sneeze etc. My last physio could feel the lump and wanted it reviewed, however, I’ve seen two reputable ENTs (Hughes and Axon) and they have both ignored how painful this is for me. There is no-one left for me to consult with and this is the symptom that bothers me most as it seems to causes such awful pain and headaches.
From my imaging, it seems I’m a bit of a walking disaster . I’m hopeful that I will get to the bottom of things, especially now that I have a much better understanding of things and will be able to challenge the professionals and push for answers.
You might try to get some answers using Spine and CCJ MRI Scans | Medserena Open MRI services and getting CCJ scan in flexion/extension/rotation. There is a chance your C1/C2 has stability and/or mobility issues.
I have looked at your C1 bit more closely and I think Dr Axon was right, the protruding lump is left C1 atlas as it appears that the whole C1 has rotated ~ 5 degree (blue dotted angle) to the right ( Red curved arrow points the direction of rotation) relative to the base of the skull, making the left side of the C1 closer to the base bone of the skull. The picture below is not perfect but serves to show you that your C1 has indeed rotated and could be the culprit here since there are muscles, vessels and nerves in that narrow area.
I also also found that the rotation is responsible of C1 causing protrusion at left C1 atlas (green arrow) since it moved closer to the skull and is showing up early just below the digastric muscle (red arrow). So I have confidence based on the imaging below that is the lump you are feeling on the left side.
Here is the right side and as you can see right C1 atlas does not show up until after digastric muscle (red arrow) which is typical for most of the C1 atlas. In most cases, C1 atlas is only seen at jugular vein level (second image)
So the imaging evidence points to left C1 atlas as the protruding lump and I do not know what can be done to reverse this rotation here but you can try some rehab to fix the rotation to take the pressure off on the left side. May be you can talk to Dr. Axon about the rotation of the C1 and the potential intervention to correct it since it is producing pain.
If you think C1 rotation could be causing an issue then it might be worth contacting Iain Smith at Newport Chiropractic. He is an atlas orthogonal chiropractor - they don’t do any rough manipulations, instead they use a precision tool that gently impacts the atlas.
My understanding (though it is likely flawed) is that where C1 rotation is the issue, atlas orthogonal (AO) treatment can be useful. If however the issue is jugular compression caused by a narrow gap between styloid and C1 then AO probably won’t help.
A word of caution: chiropractic interventions have been known to cause instant problems, sometimes very serious ones. I think this is more for the fast neck-cracking type, which Iain Smith does not do, I believe.
I had a telephone consultation with him, but decided not to pursue it as my C1 wasn’t particularly rotated. He does generally get good reviews, but as usual there are no guarantees that he will help, and it is expensive, I think somewhere in the region of £2-3,000 for a full workup and set of AO sessions.
Searching in this group will throw up some patient experiences:
Thanks for the info @IJVCompression. Unfortunately he is 180 miles and a 3 hour journey frome me so he isn’t someone I could see regularly, however, he may be someone that can look at my marked up imaging and perhaps point me in right direction. Thank you.
. I’m hopeful that I will get to the bottom of things, especially now that I have a much better understanding of things and will be able to challenge the professionals and push for answers.
