Dilated Collaterals Cause Progressive Weakness on All Limbs as result of Bilateral Jugular Vein Occlusion - Interesting IJV Bypass Treatment

That’s just the R side images (my left side is non-dominant and barely visible at all). Re IJV stenosis, the compressed part was only between the C1 TP and the SP.

In the first picture actually it is my carotid artery and the carotid sinus being poked by the hyoid bone and thyroid cartilage, but I think I mentioned somewhere that all that area is a very dynamic realm – when I feel my arteries become pinched by hyoid/thyroid cartilage, usually it’s enough to activate some muscles to pull all the thyroid/hyoid apparatus down towards the chest and the arteries get out of there. Sometimes it’s even enough to give it a gentle massage around that area. Other CT scans (taken earlier/later, ~6-12 months apart) don’t show any arterial impingement by hyoid or thyroid cartilage.

Things have changed since these CT scans, but we can discuss that in private if you feel like.

Ok. yeah I can see the carotid artery clearly but it does appear to be close proximity to Hyoid and Thyroid cartilage. Something might be pulling towards the carotid. I also believe your Jugular Stenosis is not limited to SP & C1. Muscles might be involved (to what degree, I can’t confirm either).

I remember you mentioned that things might have changed for the better after long physiotherapy.

Just on time:

If you think of that, compression on the spinal canal (herniated disc, shifted vertebrae etc) might obstruct the vertebral venous plexus and increase demand of flow through the IJVs. In case the IJVs are obstructed (by styloid processes or something else), there might be increase in symptoms.

UPD: apparently as they are valveless veins, sometimes the blood can travel against the direction of normal flow, back into the head under the “right” circumstances…

So it might be that the real culprit isn’t the elongated styloid processes per se, but something wrong with the spine

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@vdm In biology everything is possible and one thing might not explain all scenarios and if you have vertebral issues like the one explain, it is possible to impact the blood flow and negatively impact the spinal cord. However in the case of spinal cord compression with IJVS, the hypothesis is not only compression, but also venous hypertension which is also known to impact spinal cord function. As this study and the video of the 17 year old indicate, relieving the compression of the IJV does resolve at least a good portion of the symptoms related to myelopathy hence the dilated collateral vein’s role in this particular scenario.

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That’s a great image and goes someway to explaining why my symptoms are worse after being upright.

@Dontgiveup I have ALL the symptoms you described in your original post, including severe leg, hip, back pain and stiffness which comes and goes and severe breathlessness and tachycardia and temperature changes. This is a picture of my collaterals.

Also at the front which I’ve tried to look into and it doesn’t seem normal to me. Does anyone else have this?

There also seems to be quite a lot of gubbins around the vertebral artery on the left hand side which I have wondered about as so many symptoms resemble vertebral artery insufficiency.

@DogLover My God. I think you have pretty bad dilated collaterals. One side is bit worse than the other, probably due to severe compression on that side although I can’t see it. BTW, I suffer from many symptoms as you such as memory impairment, brain fog, arrhythmia (Heart Block, Tachycardia when asleep), weakness/tightness/numbness on all the extremity, cognitive issues such as writing and reading issues (you will see a lot of spelling/omitted words in my posts if you carefully examine them), Insomnia and sleep jerks, bladder issues, I can go on and on…do not want to bore people with my endless list of symptoms. Although, we do not know the exact mechanism of how some of these symptoms are caused, I assume they primarily stem from blood circulation impairment related to IJVS & Nerve compression based on many studies, hence the cascading effect to multiple systems of the body, Central Nervous System, Peripheral Nervous System, Autonomic Nervous System (arrhythmias, temperature dysregulation, postural issues), Gastrointestinal System (Vagus Nerve involvement - Gastroparesis, intestine mobility issues), Endocrine System (Through raised Intercranial Pressure affecting pituitary gland) and lastly Glymphatic System (Vessels that clear the waste from the brain during sleep - impairment is linked to all kinds of neurodegenerative diseases and brain atrophy since CSF can’t be cleared due to impairment of venous outflow - The glymphatic pathway in neurological disorders. )

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@DogLover I am wondering if you have calcification on your Carotid artery (shown below) or is it just an artifact on the 3D rendering of the CTV? I am wondering if you have axial images close to the Carotid Bifurcation so we can can confirm it, I know CTV is meant to visualize venous system as opposed to arterial but should show calcification regardless.

Thanks I will read that.

Interestingly my compression of my right jugular isn’t that bad. But you can see the collaterals quite clearly here too, on the left and right.
Vertebral veins below seem to be doing quite a lot of work here too??

To my untrained eye my upright MRI also looks pretty congested above the jugular vein. Is this what reflux looks like on MRI I wonder.

Well spotted! Yes I think so too but no one has mentioned this as an issue and when I googled it it says it’s fairly common!

Your symptoms sound very similar to mine. My whole system seems shot! I had a lumbar puncture last week and since then then brain fog (fog - sounds so innocuous - more like brain concrete) seems a little better but other stuff is worse. Extreme pain in head on right after I cough and as soon as my leaking from eyes and nose starts. My heart rate is all over the place. Randomly peaked at 149 while sitting last night and stayed at about 100 for a few hours. It makes me think the cognitive and brain issues may be due to intracranial hypertension even though there was no indications on my MRIs. Has your hypertension resolved at all and did it make any difference?

You are right in that intercranial hypertension could partly explain the cognitive and brain issues. I never had lumber puncture so my hypertension has never been lowered/changed to see symptoms either improve or get worse. I never took Diamox (diuretics) either. I suspect I do intermittent leak CSF from the nose and the ears at times. I stayed away from things that increase CSF such as vitamin A intake and salty foods…etc. As far as the MRI goes, my hypertension shows as Partial Empty Sella and dilated optic nerve sheath with tortuous optic nerve. I can also see enlarged subarachnoid spaces on the frontal lobe which is indicative of CSF accumulation in the brain for some people and probably impacting my concentration and focus.

@DogLover One thing I would like to ask you is when they found brachiocephalic vein compression did they rule out any subclavian artery issues (I assume they did since you went through Catheter Angiogram). The reason why I am asking is, there little known condition called craniovascular hypertension thoracic outlet syndrome (TOS CVH) which causes increased hypertension in the brain. This is explained well in MSK Neurology site posted here (New paper associating vascular ES with IIH)

Source : New paper associating vascular ES with IIH

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It hasn’t really been looked for in detail as I’m convinced that they is a TOS element. TOS is one of the things I pursued in my journey trying to find out what the hell was going on. I’ve read this article before but I will re-read it thank you. I know some symptoms relate to lifting my arms and I have mentioned this to Dr Higgins. There is no treatment option for this yet as it is so new so I am really hoping that the styloid surgery gives me at least some relief.

For interest and for anyone looking for further causes for there symptoms, here is a snapshot of the braciocephalic You can see where the blood flow stops and also what looks like reflux in to anterior jugular (?) and collaterals

And another. You can watch the blood travel upwards as its injected. Not sure what vein on left of picture is. I can only think vertebral vein or external jugular

This one is shoulders shrugged which I had advised eased my symptoms. You can see improved flow and no collaterals or reflux.

@DogLover Yeah I can see the reflux and definitely that is contributing to the dilated collaterals. I was surprised at the severity of your dilated collaterals in axial images & 3D ones which did not correspond to the degree of compression of your Jugular Veins (which is moderate) so I thought based on the arm raising issue that you had, this might have something to do with blood back-up to the Vertebral arteries back to the brain and follow back to the collaterals causing secondary IIH hence the dilated collaterals as explained by KJETIL LARSEN in his article.

BTW, the images are in the venous phase, so we really do not see the subclavian arteries here but this issue is Compression of the distal subclavian artery called TOS CVH and I think it will be wise to talk to Dr. Higgins to investigate if there is any compression of the subclavian arteries as well. Since he has the Angiogram already, he can look again or order another non-invasive angiogram to see if the subclavian arteries are narrowed or occluded when you raise your arm. It might also be that brachiocephalic vein compression might be contributing your IIH more than the jugular Vein compression. At this point, it is just guess.

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Yes I think you’re right and I will ask him after the surgery. I’ve checked the subclavian arteries on my previous CT angiogram and they look fine but of course arms are not lifted and the results can be pretty dramatic when I lift my arms so I will pursue this. Thanks for you help. Have you considered lumbar puncture for your IH? My pressure was normal incidentally.

@DogLover No I did not as I noticed that I intermittently leak CSF in my nose and ears. This ironically keeps my CSF pressure down to a level that I predict will be normal if I do LP. The other reason is, my eye doctor could not find Papilledema which is good marker for extremely raised CSF.

Question, given the axial images you shared, I do not see Styloid compression on your Jugulars, seems more like C1 compression. Are they removing it because it is calcified (messing with Carotid/nerves) or because it is actually compressing your Jugular Vein against C1 but you did not share those slides here.

I think it is wedging the jugular in against the transverse process. Also I have many symptoms that seem to fit with styloid, pain, nerve spasm etc

Ok…I see it is slightly compressing it against muscle in the vicinity of C1 but I am still baffled by the engorgement of your collaterals. I assume the surgery will be on the right then.

Yes surgery on the right.

Yes me too on collaterals. I can only assume brachicocephalic but it is on both sides. I’m also worse upright. Maybe the vertebral veins are blocked. I’m very confused.