Possible jugular compression, CSF leak, intercranial hypertension. Advice?

This is a true statement. 2 cm of styloid is plenty to cause symptoms due to thickness, curve, angle, etc. The more experienced ES surgeons do “skull base” removals, however, that means “as close to the skull base as possible w/o injuring any nerves”. The end result is often a small styloid stub 1 cm or less long.

There is no consensus. It depends on what the surgeon finds once the neck is open & the cause of IJV compression is physically visible. If the styloid is not a party to compression, it’s left alone but will be removed or further shortened if it’s a player in compression. If C-1 is a prominent contributor to the compression then some surgeons believe there’s no harm in shaving off a bit of C-1 to make more space for the IJV. You’re right that the jury is still out on how safe that is over the long term.

In the past, Dr. Hepworth has moved the IJV away from C-1 & reanchored it to muscle or ?, but recently a couple of members have posted that he’s mentioned possibly shaving C-1 if necessary. That would be something new for him, or perhaps he’s taken a page from Dr. Costantino’s book & will have a neurosurgeon present to do the C-1 shave.

Other causes for IJV compression can be scar tissue, nerves, & even muscles all of which can be moved around or removed to relieve the pressure on the vascular tissue in question. If these soft tissues are the dominant cause of IJV compression, it’s possible for C-1 & the styloid to be left alone.

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Do we know of any previous cases where the jugular vein compression between styloid and C1 appears normal or borderline on CT scans when supine, but the compression is much worse when the patient is upright or during neck flexion?

In that case, I assume a supine CT scan may be normal but a dynamic CT venography would provide much more compelling evidence of jugular vein compression when done with provocative manoeuvres such as neck flexion?

I have very long styloids and lots of symptoms but my scans appear normal/borderline for jugular vein compression. I hope that more compelling evidence of compression can be revealed with a dynamic CT venography.

Yes. We recommend that our members who think they have vascular compression get a dynamic CTA which looks at veins & arteries. An MRV can be helpful too but cannot be done dynamically. Beyond that is an ultrasound to measure blood flow velocities at various points along the IJV up close to the skull base and more invasive is a venogram.

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From personal experience, my styloids were compressing the IJVs right from the exit of the skull base down, so my styloids needed to be removed at the skull base, but obviously it varies as you mentioned with the angle & thickness of the styloids.

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I’m currently in Seattle about to have my venogram performed by Dr McDougall. I’m very excited because I think this test will reveal exactly what’s going on and hopefully surgery can be scheduled ASAP.

In addition to the venogram and manometry, Dr McDougall suggested on the phone he may do an angiogram as well to assess the arterial side of things.

Like I mentioned earlier, Dr Hui’s assistant told me that there was some discussion about Dr McDougall performing the decompression surgery if warranted.

I didn’t discuss this with Dr McDougall over the phone but I have a follow up appointment on Wednesday so I’ll be sure to discuss every thing with him.

I’ll keep everyone posted about my results!

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Hope it all goes well, look forward to hearing what he finds out!

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By the time I read your post, your procedure(s) is/are done. I hope you get the answers you’re looking for & that Dr. McDougall very thoroughly explains the results to you. It would be great if he would do the decompression surgery do you don’t have to look any further to get that done. Besides that, if it goes well, we’d have another doctor to add to our Doctors List!

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Unfortunately, and very frustratingly, I showed up at the hospital and they did not do the test I was expecting. When I got there, I was told they had scheduled a CTV.

I was caught off guard but assumed maybe plans had changed and thought that maybe Dr McDougall did want a CTV first.

But upon reviewing the doctor’s notes, I’m pretty convinced that somebody completely screwed up and ordered the wrong test.

I went on MyChart and reviewed the notes from the summary of my phone consultation with Dr McDougall. Here’s what they said:

01/17/24 2158

Per Visit 1/12/2024

Plan:
Cerebral venography and venous pressure measurements withpossible cerebral angiography depending on the findings of thecerebral venography.

01/17/24 2158

Pt called to schedule a venogram, as directed by Dr McDougall in a phone call last Friday

01/17/24 2159

Routing to RN to have Order placed for CTV @ SCH please --thank you

01/19/24 0943

Pt otp would like to schedule fuv - has venogram scheduled for 1/29. Would like to schedule the day of or day after procedure

01/19/24 0946

Spoke w pt

  • relayed Plan per Dr. McDougall (below)
  • MyChart activation sent

Plan:
Cerebral venography and venous pressure measurements with possible cerebral angiography depending on the findings of the cerebral venography.

So, Dr McDougall’s notes couldn’t have been clearer. That’s exactly what he explained he was going to do on the phone, namely a “cerebral venography with venous pressure measurements with possible cerebral angiography”.

But they still scheduled a “CT Venogram Head W WO Contrast [IMG8900 Custom]”

Unsurprisingly, the CT didn’t reveal anything much. It wasn’t done with provocative maneuvers.

Maybe the scheduler or doctor’s assistant didn’t know the difference between a “cerebral venography with venous pressure measurements” and a “CT Venogram”?

I can’t think of any reason for them to schedule a CTV other than someone totally screwed up.

Why would I drive 8 hours up to Seattle to get a CTV when I can get those anywhere?

I asked the people at the front desk to explain this, and they said they’d confirm with Dr McDougall, but naturally he’s very busy so I haven’t heard back from them yet.

I do have an appointment scheduled with him on Wednesday.

Hopefully they’ll be able to sort all this out.

That’s so frustrating, I feel for you, getting all geared up for it & someone’s made a mistake…I hope that your appt with Dr McDougall isn’t a waste of time because of this :rage:

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Agreed that Dr. McDougall’s notes/instructions were very clear. I hope you can get the testing he wanted you to have while you’re still up there, & it doesn’t need to be rescheduled later in the month. I’m glad you have a follow-up with him tomorrow. Hopefully things will get cleared up then. Please let us know how your appt. goes.

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I again spoke with someone at Dr McDougall’s office yesterday (Tuesday) about this and referenced these notes.

I was ushered into one of the exam rooms by a young guy who I patiently explained all this to.

He pulled up my chart on a monitor and looked at Dr McDougall’s notes.

I explained to him that a “cerebral venography with venous pressure measurements” is a different test from a CT Venogram.

He was absolutely convinced that the correct test was ordered and that “cerebral venography with venous pressure measurements” WAS a CT scan. I told him I knew it wasn’t.

Finally, he went to check with someone else in the office, presumably a bit higher up in the chain (not Dr McDougall though). He came back and said that the correct test was ordered.

There’s nothing else I could do.

I guess I’ll see what Dr McDougall says during my visit today.

I’ve talked to three different people on three different occasions since my test on Monday hoping that, if they are able to contact Dr McDougall, they could still fit in the correct test during my visit up here. One woman said she would relay the message to Dr McDougall but I don’t know if she ever got around to it.

It’s really unbelievable.

I have every faith in Dr McDougall but mistakes like this really shouldn’t be made.

I’m only scheduled to be in town for another couple of days. While I hope they can somehow squeeze in the correct test while I’m here, I’m not sure a doctor like Dr McDougall has a spare couple of hours to fit in a test like this at the last minute.

I’ll post an update after my appointment.

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So sorry for your situation @jrodefeld , feel for you :hugs:

Happy to report that they were able to schedule the correct test for tomorrow!

I saw Dr McDougall and he apologized profusely for the screw up and took responsibility, even though I don’t think he was at fault. His notes were quite clear but someone in the office clearly messed up.

Anyway, I was very impressed with him. He was professional and meticulous in explaining the condition and he clearly “spoke our language” in understanding the nuances of this condition.

He went over the CTV that I had and showed very clearly the severe stenosis in my right jugular vein in comparison to the left. As he explained, whether or not this is causing symptoms will be revealed by the presence of a pressure gradient on the cerebral venography.

He’s also going to check the veins lower in my neck given my history of thoracic outlet syndrome.

So he absolutely corrected the problem and made the effort to get this exam done during my trip up here. So credit to him for making it right.

I do have a question regarding the use of sedation during the procedure.

I recall on the venous congestion webinar with Dr Hui, Dr Hepworth and the rest, that the validity of the testing for venous stenoses and pressure readings can be affected by the use of anesthesia.

Does this also hold true for conscious sedation?

The last thing I would want is for the results of this test to be not valid because of the sedation they gave me.

Does anyone know anything about this?

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I’m so glad you’ve been vindicated! Great to hear that Dr. McDougall was on your side & good for him for taking the blame even if it wasn’t his mistake. That speaks highly of his character.

The only recollection I have of a discussion on anesthesia vs no anesthesia came from JustBreathe who said if you can tolerate having the venogram w/o sedation the results are more accurate. She didn’t specify whether it’s any type of sedation i.e. conscious or “out cold”, but I would think conscious sedation would provide better results than being fully asleep, however, I don’t know if no sedation is better than conscious sedation as far as results accuracy goes. Perhaps you can ask Dr. McDougall about that prior to getting meds when you do have your venogram.

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So pleased that he’s got the scan sorted for you, & very gracious of him to accept responsibility when it didn’t sound like it was his fault! I hope that the venogram goes well & shows something which can be treated!

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I had my cerebral venography yesterday and followed up with Dr McDougall today.

Basically, the venography did reveal severe stenosis (basically occlusion) in the right jugular vein, but the left was pretty open and draining well.

However, he did not see a major pressure gradient across the right jugular stenosis, so he was uncertain as to the clinical significance of the stenosis. I can’t find the actual numbers, I’ll post them if I can find them.

I did confirm that he actually has not performed any styloidectomy surgeries, but he is absolutely knowledgeable about this evolving area of medicine through his relationship with Dr Hui.

Here’s his notes following today’s appointment:

"Jacob returns with the sister today to discuss the results of his cerebral venogram carried out yesterday. Placed we went over the severe stenosis affecting the right internal jugular vein at the level of the C1 vertebra which appears well compensated in terms of flow across the torcular are to the left transverse sinus in the sense that the venous pressures appear to be within normal limits. Additionally no significant gradients were identified, and no restrictions in flow through the dominant left internal jugular vein were noted with the head turned to the right or the left.

We discussed the evolving understanding of cerebral venous hypertension the potentially confounding possibility of an intermittent CSF leak and my uncertainty as to whether or not the right jugular stenosis is clinically significant given his intracranial cerebral venous pressures which would be considered traditionally to be within the normal range.

He will seek further advice from Dr. Hui and contact us if we can be of further assistance in the future."

I wonder about the effect of the medications they gave me and whether they may have caused erroneously low pressure readings.

But, more importantly, wouldn’t an active nasal or skull base CSF leak cause the pressure gradient readings to be much lower than they otherwise would be without a leak?

If the idea is that pressure gradients indicate that venous outflow obstruction has led to a build up of pressure in the brain (intracranial hypertension) and thus symptoms, then a CSF leak would act as a safety valve lowering the pressure and thus lowering the pressure gradients across the venous stenosis.

So even though the pressure measurements were within “normal” limits, the occluded right jugular vein could still be the underlying cause since the initially high intracranial pressure could have caused the CSF leak.

Therefore, even though Dr McDougall didn’t measure very high pressure gradients across the stenosis, if I were to repair the CSF leak without decompressing the jugular vein, my intracranial pressure would rise and so too would the pressure gradient across the narrowed jugular vein if the cerebral venography were repeated.

Does this make sense?

Has anyone else with both jugular vein compression and an active CSF leak had erroneously low pressure gradient readings on a cerebral venography?

Next steps are to follow up with Dr Hui and maybe go on to get a referral to Dr Hepworth.

I’m also scheduled to get a CT cisternography to hopefully visualize and confirm the CSF leak.

Curious to hear people’s thoughts about these results.

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Yes, you are absolutely right. If you have an actively leaking site, fixing/patching it might send you into the high pressure (intracranial hypertension) hell until another leak appears, or until your body somehow adapts to it (by decreasing production of CSF - I know that’s possible because people produce less CSF as they age; or by getting used to it).

Now, “much” lower or “a bit lower” is a good question. Because there are theories supporting cyclic reinforcement and “equilibrium” idea (Dr Fargen), basically saying that if you have a slight hypertension, it might cause the brain to swell, causing the venous sinuses to shrink and allow less blood (and CSF) to flow out of the limited volume and not flexible (expandable) skull (you can watch the YouTube video on CSF production I posted into my YouTube Favourites thread), causing even higher pressure of CSF as it gets accumulated and not effectively drained, causing even more pressure inside the ventricles and more brain swelling, leading to more restrictions on venous sinuses etc, until the pressure in the venous system can’t go any further (as the fresh blood is constantly pumped in) and some equilibrium is reached. The result is you have high venous pressure inside of the skull, narrow(ed) venous sinuses, and high CSF pressure.

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Yes, I agree, will be interesting to discuss this with Dr Hui…

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So I got my images from Swedish and I’ve uploaded them to Nexus-MD for Dr Hui to review. I should be able to schedule with him any day now.

Here are a couple of the more interesting images, which I’ve converted to animated GIFs…

Right jugular:

RightJugular_Cropped

Transverse Sinuses:

LeftTransverseSinus_Cropped_Fixed9

The second picture is interesting in that the contrast flows freely out of my left jugular but stays stuck in my right transverse sinus unable to freely flow out my right side.

It’s hard to see why this severe compression / stenosis wouldn’t be a problem given that it seems to explain so many of my symptoms and why there is more swelling, congestion and other symptoms on the right side of my face / neck / shoulder, etc.

The lack of abnormally high pressure gradients is likely due to an active nasal CSF leak relieving the pressure and “normalizing” intracranial pressure. I also have a strong suspicion I may have a CSF leak in my lumbar spine near the Tarlov cyst in my sacrum.

I hope Dr Hui agrees with me that this jugular compression is a problem and he’ll refer me to someone (maybe Dr Hepworth) who can fix it.

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Good imaging, let us know how you get on with Dr Hui…

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