I hope that the venogram shows enough for the team to approve surgery… Do you know what experience they have with VES, he looks very accomplished?!
Let us know how you get on 
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Thank you very much, and thank you for your time as well. I will update the post when I have news
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The neurosurgeon? I’m not sure if they have specific experience with Eagle syndrome. But that team is one of the best in Spain when it comes to the skull base.
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I look forward to reading your update, @nemo!
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Yesterday I had my neurosurgery consultation, and I was told that if surgery is necessary, it requires a multidisciplinary team (neurosurgery, vascular surgery, ENT, interventional radiology, neuroanesthesia, etc). They said that this can’t be done through the private healthcare system, so they advised me to see their same team through the public healthcare system, where they do have the necessary resources, and that they could perform the surgery there.
The problem is that if I go that route, the wait could be up to a year and a half. I’m not sure whether it’s normal for this type of surgery to involve so many different medical specialties.
We also talked about craniocervical instability as a possible cause, or the possibility that one of the vertebrae might be out of alignment relative to the others. It’s true that some of the symptoms overlap with what I’m experiencing, but I’m not sure that’s actually the problem.
I still don’t know whether CCI or some kind of misalignment could be part of the problem.
But the treatment would be different.
Is there any way that, by uploading the 3D scan, I / We could tell if anything is misalignment or if there’s any CCI?
Would there be any possibility of treating the problem without surgery while I wait? If something has shifted or the space has narrowed, could it be reopened through retraining exercises or some type of therapy?
Thank you
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Some members have had a digital motion x-ray to get diagnosed with CCI, one of our members, @PatientD suggested a test at home for CCI: 'On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
I don’t think we’re experienced enough to be able to say from your scans if there’s CCI, sometimes misalignment can be seen , but not always, & then there have been discussions about this & I think I remember one member being told that there is a certain amount of rotation which is completely normal…
This article might be interesting to read:
We have had some members with CCI and they’ve had chiropractic adjustments, which can sometimes help briefly with symptoms, but I think often if there is true CCI/ AAO it doesn’t hold and the symptoms return. Its something you would need to be very careful with as with VES manipulations for this can be dangerous.
If your neck has lost it’s lordotic curve, sometimes this can be corrected with exercises and can help a bit.
That does sound like alot of doctors to all be involved; quite often a neurosurgeon will do the C1 shave and the head and neck surgeon do the styloidectomy , although often a multidisciplinary team will be involved in the diagnosis process. I’m sorry the wait is long, it sounds about right for public healthcare in most countries though!
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I had the pressure gradient test, and it came back negative: <1 mmHg on one side and 2 mmHg on the other. Does that mean my venous symptoms (intracranial pressure, eye pressure, tinnitus, and worsening with the Valsalva maneuver…) aren’t caused by that? I’m not sure what to do next
Read theme on forume “About TOS”, general
What does TOS have to do with my problem??
@nemo - There have been recent discussions, about pressure gradients being lower when a person is lying supine for an ultrasound or angio/venogram but elevates when sitting or standing. If you click on the magnifying glass search icon & type pressure gradient into the search box, quite a number of posts that mention pressure gradients will come up. Part of the discussions has been that some doctors won’t do IJV decompression surgery if the pressure gradients aren’t high, but Dr. Liu in New Jersey doesn’t use that as a criterion to determine whether or not surgery will be helpful because he recognizes that the pressure gradient isn’t the “end all” for diagnosing how badly compression is affecting a patient. He also takes symptoms into consideration.
It seems to me that your pressure gradients are lower than the average which @TheDudes post mentions which might mean you have a CSF leak which in turn would give you terrible headaches & other symptoms:
Here’s a link to one post that mentions pressure gradient elevating w/ sitting:
I also agree that the number of doctors that has been suggested to do your surgery is unrealistic & probably unnecessary. In the US there are several ENT skull base surgeons who have a neurosurgeon assist for IJV decompressions requiring a C1 shave, but there are also those ENT skull base surgeons who do both the styloidectomy & IJV decompression/C1 shave without the help of a neurosurgeon.
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They couldn’t even see your high blood pressure. One side of your venous outflow is open, and the pressure sensor won’t show high pressure. The laws of fluid dynamics are complex (hard to understand). The ways of the Lord are inscrutable.)))) .But the engineer has an understanding. However, there are also problems with diagnostics, poor quality, and dynamic compression.
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Pressure at c1 level when standing is lower than supine. What is more when standin cerebral venous drainage shifts to the vertebral venous plexus, so in general people with yugular compression feel worse lying down and feel better standing up.
Also some degree of internal jugular vein narrowing between the styloid process and the C1 transverse process is a very common incidental finding on imaging, so having surgery with a negative manometry is completely crazy because you have the risk of having the same symptoms after surgery.
Also highly doubt you have a csf leak, do you have an mri?
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I’ve answered your question why you won’t have high blood pressure when measuring. I look at all the engineers, doctors and astronauts here on the forum, everyone knows everything))))) Does anyone who posts on this forum have an engineering degree? I am a licensed engineer and I know hydrodynamics. Some of your symptoms are TOS (numbness of the fingers, the hand itself, tension of the neck and shoulder muscles - the neck may strain partially from the Eagle). Pain in the face, throat, swallowing dysphagia is an Egale syndrome.as for the throbbing tinusitis on the right, everything is clear . As for the strong compression of the IJV on the left, perhaps. But we need to figure it out.
as for the pulsate tinusitis on the right, everything is clear . As for the strong compression of the IJV on the left, perhaps. But we need to figure it out.
I ask you again , when you sleep on your side , from which side does it get worse and does it get worse faster ? Do you feel increased intracranial pressure in your head, nasal congestion, and increased tinnitus when you sleep on your back? Have you ever had headaches on the left side of your head? Have you ever had severe dizziness attacks?
other answers to my questions , I added information “About TOS and medical articles read
General”
“Compression of the two IJV and unsuccessful surgery in Russia”
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You’ve raised some fair points, although I disagree that numbness of the hand and neck & shoulder tension are not indicators of ES- they could be TOS but we have had some members with ES who have these symptoms too. And not everyone has the swallowing issues which many doctors regard as essential for an ES diagnosis!
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Well, that’s your opinion. But you’re not a doctor, and neither am I.))))
If the styloids are too large they can cause swallowing issues and maybe neck pain but in this case styloids are fine is just c1 yugular compression which apparently is incidental and not related as manometry is negative.
He is an athlete; he has strong neck muscles, including the scalene muscles, and the numbness in his fingers is more likely related to TOS.
Exactly, my opinion, but doctors dismiss many symptoms that we see members have here as not being ES, so doctors can clearly be wrong too…
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I know, doctors are people too, and they make mistakes. But TOS has already been studied very well; more than 100 medical articles have been written about it, which I listed in the PDF.
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So, does that mean it’s still possible that I have this problem even though the pressure gradient doesn’t show significantly elevated pressures?
Regarding your question:
Normally, sleeping on my left side makes my symptoms worse than sleeping on my right side. When I sleep on my back, yes, I notice an increase in pressure, pressure behind my eyes, and nasal congestion. In other words, the fact that my suboccipital area and neck are resting against the pillow makes my symptoms worse.
The increase in tinnitus happens more during the day, at different times, and I haven’t been able to identify a direct cause. Sometimes it happens when I turn my head.
Yes, I’ve had severe headaches affecting only one side of my head, extending down to my jaw, and I’ve also experienced episodes of dizziness when turning my head quickly. It doesn’t happen as much anymore, but turning my head still causes pain and makes my symptoms worse.
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