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

Wow @DogLover :bowing_man: I really admire your skills in both research and imaging (all self-thought I assume). You remind me of ME :smiley:. I have the same background as you (not only in symptoms :laughing:) in that I am computer scientist with many years of software engineering and architecture. I also have degree in Physics so I am bit of science enthusiast. If I go on a tangent here a bit, many folks who are not into software engineering do not realize that we play a jack of all trades, master of none when it comes to many things. I think due to working with many different software industries, if you are developing software for genetics (GENOME software), for example, you will work with geneticists in order to develop it as they are the subject matter expert but learn a lot in the process same as other industries be it financial, scientific, medical…etc. So point being, you also master googling as you are better equipped with querying it more efficiently and finding items of interest as we understand how search engines parse queries. My 7 year old daughter suffered from a rare esophageal inflammatory disease called in short form EOE (Eosinophilic Esophagitis), after years of remaining undiagnosed, Google assisted me to diagnose her based on her symptoms and subsequent upper GI scope biopsy confirmed the disease. So while you are bit impaired due to ES/BVC, do not underestimate the competitive advantage of your computer skills.

Back to the topic at hand, I think the good news is we know with some degree of accuracy, based on the imaging and post LP symptom relief, that raised intercranial pressure is at least partially responsible for your symptoms and that both IJVS and Brachiocephalic Vein Compression (BVC) have role in this. What we do not know is how much from each of these compressions is contributing to the dilated veins. With the limited images you shared so far, I am leaning towards 40% from IJVS and 60% from BVC. There are 2 reasons why I am leaning towards BVC. One all the studies I have read thus far that contained severe to near-occlusion IJVS, produced similar number of dilated collaterals that you showed us in the images you shared but your IJVS do not seem severe or near-occlusion. Secondly, the image that you just shared with us shows pretty severe stenosis of BV compared to mine (I did compare them, see below). So now your whole facial & neck veins (front & back) are dilated and god knows how many nerves/nerve exists they are compressing producing all these weird symptoms.

I believe they should shave the atlas (I trust Dr Axon & Higgins to be expert in this) since it appears to be causing most of the compression based on the limited images you shared. As far as the sternum is concerned, I really do not know what the intervention would be as I have not done a lot of research in that area and as you noted only few studies exist. I can say with confidence though, that stenting, regardless of the type of vein, carries risk of clotting as there are a number of studies linking to it and one might need to be on blood thinners for long time once stented. In your BVC case, I would stay away from it as Higgins advised also noted in this study (Crushed stents in benign left
brachiocephalic vein stenoses
) that without removing the extrinsic compression, it will be crushed. I wonder if they could nudge the Aorta Arch a bit somehow without shaving the sternum I guess that is not easy since they will have to open chest wall just like the open heart surgery. Looks to me the orientation of the Aorta Arch angle is compressing it against the sternum although your sternum also seems bit thicker (don’t know if it is due to magnification here).

Here is my chest CT (Red arrow pointing to BV and Cyan Arrow pointing to Aorta Arch). Second image Aorta is not visible.



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I think you have a good plan. If the surgery in March does not significantly reduce your symptoms, then BVC intervention is warranted. I know Higgins said it is years away but it is few millimeters away from total occlusion based on the image (perhaps, something to investigate when you stand up and raise your arms how that can dynamically interact with the sternum/Aorta arch movement). It could be that standing up and raising arms might be compressing it more hence all the symptoms. One hypothesis is, if we assume that IJV collapses significantly in standing up and BVC compression gets worse, then this is the double whammy that you so elegantly put that your whole body would be shot

Sorry for the long notes ( By now, everyone here knows, here comes KoolDude with his long rambling).
I am praying that your surgery goes well and that you have plan B if this does not work well. All in all things are looking good.

In regards to a styloidectomy/C1 shave, what are potential reasons why surgery would potentially not help? I understand that recovery is different for everyone and time plays an important part. I was talking to someone who was suffering pretty badly for weeks after her surgery but at around the 3 month mark, all of her symptoms had resolved.

But what would be the reason for the jugular vein remaining closed post surgery? Shouldn’t taking away the bony obstruction eventually resolve jugular compression?

I was talking to someone else who is a couple months out from surgery and is still struggling and considering a stent. I think more recovery time is needed, but is there a reason why after surgery, the jugular would collapse/remain closed?

@DogLover On close scrutiny, I hope it is just my eyes, but there is tiny streak of clot formation on where it is most compressed. You can see the tiny dark line demarcated by white line pointed by the Cyan Arrow below. Did they find any clot formation in CT Angio? I hope this is just my eyes or imaging artifacts.

@Dontgiveup This is due to swelling and because IJV has thin wall it can easily be collapsed by muscles particularly when swollen. It might take 3 months or more to have fully open after the swelling subsides. I did talk about it here for UK case (Day 5 – Post Styloidectomy/C1 resection update - #13 by KoolDude)

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Hey again,

I’m currently waiting on a catheter angiogram with Dr Higgins to find out whether C1 needs to be shaved down during the styloidectomy surgery. Dr Axon wrote a letter asking him to expedite the appointment as I’m suffering badly. But it seems like I’ll be waiting months at this rate. I’ve tried chasing up the angiogram as much as I can, even with Dr Axons letter, nothing seems to be moving at all. And I’m struggling to wait any longer.

Dr Axon also mentioned in the letter whether it was appropriate to just go ahead with the surgery without the angiogram and remove the C1 transverse process anyway considering the CT venogram report and my current state of health.

Ideally it would make sense to remove the styloid as close to skull base as possible and if that doesn’t give relief to the jugular vein, then to go ahead and shave down C1 in order to make enough space - I’m not sure in what order the surgery is performed though.

I’m extremely nervous about the C1 shave. I don’t know what the risks are and if it can cause any further instability/structural imbalance that has some other knock on effect down the road. I don’t want to do something that is unnecessary if removing only the styloids can do the job. BUT, I also don’t want to have surgery without doing everything I can to resolve my symptoms.

I’m not sure how important an angiogram is, if my CT scan already shows the compression from both my styloids and C1.

Should I wait for the angiogram or should I just push forward with the surgery?

@Dontgiveup First of all, I really feel your pain and anxiety. Sometimes worry + ES clouds our thinking and we can’t really quantify risks very well. So let me say this, nothing is permanent (health, pain, suffering…etc. it is the nature of the universe). So this will resolve in time and would unfortunately take sometime before you see symptoms disappear even with surgery so patience is key (I know it is hard when suffering).

Now the good thing is you are under the care of one of the most experienced ES surgeon and reputable Vascular doctor Dr Higgins so I trust their judgement of your case. If during the operation, they see that the Jugular Vein blood flow appears to be normal, then they will abort C1 shaving is my assumption as I understand it from your posting. So I trust Dr Axon since he has done countless operations of this kind. If they feel they need to shave down the C1, I would not worry about cascading effect and misalignment as that might be minor compared to what can happen if blood flow is left impaired for long time (Dr Axon is well aware of this). So the cost benefit analysis is warranted here.

Secondly, there are no good studies out there but I found one study (My long journey to diagnoses of Jugular Vein Compression by Styloid & C1 - #6 by KoolDude) where 10 or 11 people went through Styloid removal as well as C1 shaving and the outcome was promising as most had positive outcome and no complication relating to C1 was reported. Also, we have few folks that went through it recently such as @M_UK who does not appear to be affected by any complication relating to the C1 in particular. So all this should give you a confidence to go ahead and if anything, the recovery might be bit longer than Styloid removal alone but that is better price to pay than not having all your symptoms improve and face revision surgery in the future.

As far as the Catheter Angiogram is concerned, I would rather have the decision made by the doctors but my untrained opinion is, that since the compression is visible in your CTV, they only needed to see blood flow and pressure gradient with catheter angiogram since they can’t tell if that is only the problem you might be having. The other thing is, that rules out a whole host of vascular diseases that is not even related to ES. So it is good to have it from that point of view. But on the other side, we have lots of people that never had catheter angiogram and had the surgery without any issues. So this one is really personal thing. I am a health nut so I would like to rule out other stuff so that is why I wanted to do the catheter angiogram but in your case, it might not be necessary since the compression is visible.

All in all, I want you to know things will be ok. Trust the doctors and as the old adage goes Be patient with yourself. Nothing in nature blooms all year

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It’s so difficult to know what to do for the best, a tough situation! If Mr Axon is willing to do the surgery without waiting for the angiogram, & feels that given your health that might be the nest course, then personally I would trust his judgement. @Aleabee had the C1 process reoved duting her styloidectomy, & I believe Mr Axon said that as long as the process is present one side of the C1 then it should still be stable, although I appreciate that neck instability is a concern for you & different for all of us…Is Mr Higgins going to be available for the surgery with Mr Axon? If so, then I’m sure that they will act in your best interests & not do anything risky…
Sending you a hug, not an easy call :hugs:

@KoolDude thank you for your help and for your reassuring words. I’m really struggling and trying to find a little bit of support is hard to come by. You’re right, constant pain and anxiety does cloud judgement and it’s hard to remain patient and rational.

Ideally I’d like as many tests done so that I have all of the information in regards to my health. I want to make sure everything else is ruled out - much like yourself. But at the same time, the waiting times are agonising and I just want this suffering to end. I still don’t even know if this will be the answer in resolving my issues… but my CTV points to it, along with my symptoms. I just find myself going around in circles. I think I’ve done as much research as I possibly can. I’m concerned about my cervical instability, but given the jugular compression, I’m pretty much pushed into having surgery regardless. Plus my C1 is pretty much fused to my skull - just a congenital anomaly. Not sure how that would affect me if I was to have a C1 shave.

I’m also worried about getting all of the styloid removed since the compression is all at the skull base. My styloids are very thick at the skull base too.

I’m just scared of doing absolutely anything incase I get worse. Scared to put any trust in doctors. But I know I can’t stay like this. I just want my life back.

I’m so so tired of fighting everyday.

Thanks again for your help. It has helped to put things into perspective. I’ll try to be patient, but I’ll also contact Dr Axon and see what he says about performing surgery sooner.

@Jules i have no idea if Higgins will be present during surgery with Axon. I would hope so, if it can help benefit me.

@Dontgiveup I know and I really do sympathize with you. May be if you try not to FIGHT everyday and accept the pain, it might make you more tolerant of it till you get it addressed. Accepting pain is not the same as giving in or giving up. It is a mechanism to dampen down the pain sensitivity of the brain and weaken the pain receptors. Years ago, before the ES start to wreak havoc on my system, I used meditate for about 20 to 30 minutes a day and one of the things I learned was not to resist any feeling or sensation that come but to be with anything that the present moment throws at you. So as I meditate, if back pain comes I will simply notice it and let it be there, if anger comes similar…so I was astonished the power of the mind over the body. I would feel pain in my back less and less so there is feedback from mind to body. Although I can’t meditate as I used to, sometimes I do it while relaxing on a sofa or something. You might wanna try that. Here is link that gives good tips from Harvard (6 ways to use your mind to control pain - Harvard Health).

Secondly, there is no study known to present day that links C1 shaving to cervical instability. If anything, your atlas will be shorter even if it was to rotate and imping other organs such as vascular or nerves (the opposite might be true). When we worry about something, the brain does put forward all kinds of danger scenarios (rumination) and this is by nature a protection mechanism so that we prepare for any possible dangerous scenario but it is just a simulation of unfounded fear and would likely not materialize. Mark Twain put it nicely in his quote “I am an old man and have known a great many troubles, most of which never happened”.

I am confident you will get better and one day will put all this suffering behind you. In the meantime, do not believe what your mind throws at you, sometimes it is not true so watch your thoughts and know it is not reality…just thoughts.

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@KoolDude I’ve been doing my best to distract myself from the suffering. I could meditate somewhat beforehand, but this makes it significantly harder. I mostly try to research and daydream my days away so I’m not focused on how I feel. To say it’s hard is an understatement.

It honestly just feels like being attacked by an invisible enemy. Worried I’ll never hear silence again. The ringing in my ears/head is relentless and I know it’s not one of the easiest symptoms to resolve, even with surgery. And that’s just one symptom out of 50.

I’ve been talking to someone who says that Dr Hepworth says shaving C1 can and does cause further instability with some people.

But I agree, there’s not any studies/reports that links C1 shaving to instability. But I know it’s not a common surgery and cervical instability isn’t well known or even acknowledged as a serious health concern. So I’m not surprised there are no studies that exist on the matter. But just because it hasn’t been studied, doesn’t mean it’s not a possibility or a real issue.

I hope I can get away with just a styloidectomy but I’m not so sure.

I just hope Dr Axon will have my best interests at heart and make the right decisions. Until then, I will just keep on trying to hang on.

Thanks again for your help. I really appreciate you taking the time for me.

I’m.sure Mr Axon will have your best interests at heart, he’s a very experienced surgeon…I know how hard it is to not focus on all of this & to worry about the right path, sending you a big hug while you wait x

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Thanks again @kooldude.

Yes I think the IT background probably does help with research etc. I asked my husband to help research once but he’s the kind of person who stabs the screen harder if something doesn’t work so I’m not sure it’s his forte.

Thanks for looking at the images and posting yours which was very helpful. I’ve spent a good amount of time looking at the potential clot that you pointed point. I think it is another vein/artery - I’ll try and show you what I mean if you have the time/energy.

My concern with the arm elevation is that it seems to be on the right too so maybe it’s linked the muscles in the shoulder & neck pulling on the atlas or occipital bone.

I followed some of your links with interest and read your initial posts too. As you’ve probably gathered I have many of your symptoms including memory and cognitive problems including transposing my words as well as difficulty in saying them. The good news is that when I had some temporary relief these noticeably improved too. I’m not saying they were back to normal but a lot better, hopefully suggesting not much permanent damage. I’ve had this for 20 years plus I think; plenty of time to cause damage. I’ve had the fluid leak alone for about 12 and back pain since my early 20s & the chest pain started with my first pregnancy 26 years ago. I’m not sure why I put up with it all I think it was just so insidious I accepted it and life is so busy with young kids you just have to get on with it if you can.

I’m also optimistic about the power of the brain to find alternative route; pretty sure the mind has so much untapped potential. So I’m going to start challenging and hopefully retraining my brain after the surgery.

There are many examples of people who had lesions on their brains and had venous ballooning who have made full and remarkable recoveries. I’ll try and find some links. So hopefully fingers crossed for us all.

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@DogLover Thanks for the encouraging words and I hope this is all CSF fluid related and when normal drainage is restored, it will abate. I think it is because I am unique in that I technically have only one dominant Jugular Vein that is doing 90% of the drainage and it is currently compressed. Regarding online research, It is interesting because my wife is sick and tired of all these research I have been doing ever since I developed this vascular issues and with 3 kids to take care of, I am alone in doing it. I have to admit I enjoy it when I learn new ways that I can help myself and potentially others.

As far as the clot thing is concerned, I think I assumed that the CTV study was done with contrast and when you see dark area in a vein that is usually flow voids and indicative of thrombosis but am not ruling out any other artifacts but was convinced that is a tiny clot that might have dissolved when they did the Catheter Angiogram. I remember they give me 4000 mg Warfarin (blood thinner) when they did mine, enough to dilute small clots or new clot formation. Also, clots typically do not form in the compressed area as the speed of the blood is higher and platelets don’t have time aggregate and stick together. So I was baffled though clots can travel from lower extremity as is the case with DVT.

BTW, are you on a blood thinners?

I’ve had 2 catheter angiograms with Dr Higgins in the last few months. The first in October took about 7 weeks to come through, so not long at all. The 2nd was 3 months later and I’m now hopefully having surgery at the end of March but this is privately as I have insurance.

Just for info for others I tried to get Dr Higgins privately but was told he wasn’t practicing privately at the moment as he was waiting for the go ahead to do so in London and this held me up by 2 weeks as I only found out when I chased it up - just a heads up.

The venogram was done on the NHS and from the referral to the procedure was 7 weeks as I said. If you phone the radiology secretaries at Addenbrookes they are extremely helpful and very nice and whilst they won’t give you a date they did give us an idea of how long the wait might be and in my case they were spot on.

From my experience the venogram will confirm the pressure gradients (i.e. the difference in venous pressure from above and below the stenosis/impingement if my understanding is correct) and any ballooning carried out would if it showed any improvement, hopefully confirm that your symptoms were related to the compression.

Mr Axon told me he has done over 300 of these surgeries and, for me personally his recommendation would be enough. Also, as he has a long waiting list on the NHS (and waiting lists are supposedly increasing at the moment in the UK according to the news), is there anything to stop you getting on that list and booking in for the surgery but in the meantime trying to get a venogram as it seems the wait time for that may be quicker, rather than doing one and then the other. Perhaps it is something you could ask Mr Axon. I’m concerned about how long you may have to wait for surgery and this may be held up by another 2 months at least if you wait for the venogram first. My understanding is there is a protocol which I presume is 1) get a CT venogram scan, 2) get the angiogram/venogram confirming the pressure gradients and 3) get approval from the team of neurologists, radiologists etc, Mr Axon told me he would have to get approval from the team first at their monthly meeting so if he is offering to do your surgery without that it must be based on his vast experience and he must be pretty confident.

I feel your desperation @Dontgiveup; this is truly awful and some days I find particularly hard so sending you some hugs too. My ears are buzzing loudly as I type, my cheeks are burning and my face is pulling down into all sorts of strange shapes! My head feels like a builder has filled it full of that foam they use to fill in cracks! And when I get up the room will spin and my legs won’t work! I empathise truly.

Btw do you mind me asking where and how did you get the diagnosis of cervical instability? I would be very wary of having adjustments at the moment. I went to see an osteopath and ended up in A&E with BP of 220/130 (which is very high). For future reference there is a chiropractor in Newport Shropshire - Ian Smith, who I’ve been to see and who Dr Higgins occasionally liaises with but the cost may be prohibitive.

It’s a really difficult decision I know; hard at the best of times but so difficult to think clearly when you feel so ill.

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I think my husband would sympathise with your wife. He looks almost fearful when I start talking about brachiocephalic veins and try and show him scans, when he doesn’t have any idea what he’s looking at, as if he’s going to be tested on it later and fail!

Quite honestly I don’t know how you are coping with 3 kids to take care of. Just the worry, responsibility and strain as well as all the symptoms. You have my unstinting admiration. My 3 are grown up but still around and supportive, so in many ways I’m lucky. Just having a potential solution and not deteriorating like my Dad did (can’t even go there), getting a diagnosis and living in a country with good healthcare; it’s a good start.

No I’m not on blood thinners. Just BP medication. I have tried aspirin in the past but it made no difference and it’s not something I want to take close to the surgery I believe, but I may just take some for a few days as it can’t do any harm.

I’m getting a polite message about posting too many replies so I’d better stop hijacking this topic!

I should post a little as well (Need that polite reminder with ES, we can’t even do that efficiently). My kids lost their dad to Vascular Eagle 6 years go. They used to call me KoolDad (I guess you figured by now that is where I get my nick here KoolDude). They now call me KoolJugular, KoolEagle…etc So we try to make it as fun as we can despite the fact that I do not have the same energy as I once had for them but I see all these efforts as helping gaining back my health so it is not in vain.

Anyways, good luck with your upcoming surgery.

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Thanks. KoolDad will be back.

Hi @DogLover

Thank you for your help and support. It really is greatly appreciated.

I’ve been told by the radiology secretaries that I could be waiting months still for the angiogram. I’m not sure what more I can do to speed it up. Dr Axons letter to expedite the appointment doesn’t seem to have made any difference that I’m aware of. I keep ringing up just in case they can book me in.

Back in 2017, I had a chiro adjustment on my neck and suffered disturbing symptoms for nearly a whole year. I had an upright MRI and visited Dr Iain in Shropshire. My neck is hypermobile, I’ve got a congenitally fused atlas to my occiput and significant pannus on my odontoid peg, which is evidence of cervical instability. Miraculously, I got better and from the end of 2018- (beginning of) 2021 I was completely fine. Considering I know what I know now about my neck, it feels like it was a miracle I got back to normal. It makes me wonder how severe my instability really is if I recovered so well previously.

It was only this year after a CBCT scan that I found out about my elongated styloids. But not until I stupidly went to a chiro again which unleashed hell for a second time. No one else picked up on my styloids at all. It makes me wonder if the chiro adjustment on my neck allowed the styloids to compress things even further, or cause some damage, maybe to my vagus nerve since I had raging anxiety for months on end - actually 24/7 panic attacks are more like it. Maybe it was the styloids all along :woman_shrugging: Or maybe all sorts of factors play into it.

Regardless, I’ll never see a chiropractor ever again.

And I guess I can always try regenerative medicine like PRP to help strengthen my lax ligaments once the styloids are gone and my jugular is free. I’m hoping the surgeries will be the answer, but of course I’m not so sure of anything anymore.

I’m still unsure whether to be patient in waiting for the angiogram or just to go ahead and ask to just be booked in for surgery. And you make a good point in saying that if Dr Axon is willing to operate regardless of the angiogram, he must be very confident.

I was even told by a neurosurgeon that my jugular compression doesn’t look substantial enough to be a cause for concern and I should just forget about the styloids. So that confused me for a while. I didn’t know if I was barking up the wrong tree or not. But I doubt Dr Axon would be so willing if he didn’t think it was serious?? The compression looks obvious to me and it fits my symptoms.

I’m sorry, your symptoms sound awful. My legs feel weak and stiff. It’s awkward to walk around. And it’s frustrating when you don’t have a strong support system. I just get told to walk normally :roll_eyes: …like I have a choice.
I’ve learnt not to engage or ask for much help. They don’t fully grasp the extent of this internal battle and I don’t have energy to spend. Plus, I’d rather not be made to feel anymore alone than I already do.

I’m really glad to hear you’ll be having surgery at the end of March. I really hope you’ll have resolution of this nightmare. You’ll be in very good hands.

Goodness @Dontgiveup you have been through the wars. I hope you occasionally give yourself a pat on the back that you have got this far. You are young too to be going through this (I hope this doesn’t sound patronising); I’m not sure I would have had the resilience and resolve at that age so I think you have done incredibly well to come back from not just one but two awful medical challenges and persevere until you have some answers. It’s very hard fighting battles when you’re unwell and other people can actually set you back rather than support you, sometimes unintentionally.

I can see why you are so concerned about the surgery bearing in mind your cervical instability and fused C1. Has anyone given any separate advice on this? Also unless the neurosurgeon has extensive experience of Eagle’s Syndrome or jugular compression I’m not sure they are best placed to make that call, as this is still a relatively new area. Whereas Mr Axon has seen and treated this many times and so has Dr Higgins.

It’s hard to imagine all these wild and wacky symptoms stem from something so seemingly innocuous isn’t it? I seem to have had a personality transplant. I used to be chilled about lots of things and now the slightest thing sends me into panic. It’s like the button switches on and then doesn’t switch off again. Sometimes the depression is also like a switch has been pressed and it’s not just the circumstances, it’s like something is blocked. The good news is that when I had a short reprieve after ballooning this all improved. I became a functioning human being (well almost) again for a few days and started to make plans! So that bodes well for results after the operation and that things are not damaged beyond repair, simply temporarily disconnected!

So hold on in there and if you ever want to sound off about anything you will always find someone on here to listen. Let us know what you decide and may be see if you can do the two things in tandem so you can be progressing up the list for your op and see Dr Higgins in the meantime. He’s very kind btw and is very open minded and wants to learn; it’s quite a relief to deal with him and be listened to.

Wishing you all the best and I will update on my outcomes.

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Just ignore the message about posting alot, I find those really rude! It’s one thing that annoys me about the site…it’s a peer to peer support group so we want members to encourage each other! So never feel you shouldn’t post :smiling_face_with_three_hearts:

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