No Styloid Elongation but IJV Compression?

General
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@suenami21 - I think Dr. Costantino has enough experience w/ IJV compression/symptoms that he won’t rely solely on the balloon venogram results when deciding whether or not to offer surgery to your daughter. The fact that her pain increased so significantly during the ballooning is very telling & perhaps another indication that surgery is warranted.

Do you know if the venogram was done dynamically or just in neutral head position? I’d expect it was dynamic, but usually we hear from members that the pressure gradients were higher when the head was turned left/right or up/down, & you didn’t mention that the doctor who did the test said anything about pressure changes in different head positions.

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Thank you @Jules. They have started out rough but hopefully it will start to get resolved if Dr C decides to go through with surgery no matter the pressure gradients. My daughter is existing but not thriving. So something needs to give. This condition, as I’m sure many people on here know, is a family affair. Yes she is the one with the symptoms and having to keep living with them. And all family members who must help her get through each day are affected as well. We all need the resolution to come sooner than later. :crossed_fingers:t2::folded_hands:t2:

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@Isaiah_40_31 Thank you for your reassuring words about Dr. Costantino. I want to believe he is going to look at her symptoms and not rely solely on the venogram. Yes it is significant that her pain level did increase to the level of the worst it’s ever been when he did the balloon, and she also mentioned that during that test she had extreme pressure in her ears. The level of this pain subsided on both sides when he stopped doing the balloon. So I have to hang onto the reason for the testing was to see if they could reproduce and elevate her pain which they did.

The venogram was done dynamically, turning to both sides and the valsalva manuever as well. The Dr. did not tell us exactly what the pressure gradients were so we have to wait for the report to see if there were any changes in different head positions. I’ve always wondered if there is a way to do this test when they are upright and even standing or bending over. These positions simulate what she does in everyday life that are more likely to capture what is really happening in her veins. Is it true that when lying flat the veins are not as affected by gravity so the blood is not moving like it does when sitting, standing, etc. And the collateral veins are also picking up the slack and draining the blood that the jugulars cannot handle. I believe you said she has collaterals in a previous post. I guess I don’t know what the collaterals really look like. Her vascular surgeon, Dr. Nagarsheth told her she has many and they’re rather large so they’ve been there for some time. He has done some venograms on her and said she has compression at the c5-c6 level with scar tissue surrounding the jugulars bilaterally with 97% compression. He doesn’t take gradient pressure measurments but goes by his visualization in percentage of compression. The dr who did her venogram yesterday said there is no pressure gradient he saw at that level so now we don’t know what to believe. I saw the venogram that Dr. Nagarsheth did and it clearly shows the dye stopping at that area and barely getting through. I can see how he measured it as 97% compression. So the confusion is there. I guess I’m going to have to ask Dr. Nagarsheth what he thinks of yesterdays report when it comes out. If there is anyone on here who has seen Dr. Costantino who can tell me if he always requires a venogram to confirm the pain is coming from the C1 compression or not it would be great to hear from them. It’s now a waiting game again until he gets the report and sets up another telecall to go over next steps.

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@Chrickychricky Thank you for sharing that you felt the catheter inside your veins. She didn’t indicate that she could only feel pain from the dye so I’ll have to ask her if that was the only time it gave her pain. I’m pretty certain she said she had pain from it the entire time. And this time it got worse when they inflated the balloon. There are four neurologists who have told her they think it’s a migraine but like you, she has tried a number of medications and nothing has even come close to working. No pain relief whatsoever. She has had a migraine before and knows what that feels like. This pressure is there 24/7/365 for over 5 years now. I doubt very much that a migraine would last that long. We know she has C1 compression from the imaging and Dr. Costantino told us that is what he sees in her imaging even before we said a word the first time we spoke with him.

I am so glad to hear you say that the surgery improved everything for you. This is exactly the type of outcome that is so necessary for us to hear about. It keeps our quest for receiving healing alive. As far as your pressure gradients go, may I ask what they were? I’m trying to understand how they work - how they are intrepreted etc before speaking with Dr. C. Her styloids are wide but not that long. And he didn’t mention them as being part of the problem from the imaging. She was diagnosed with POTS a few years ago due to unexplained tachycardia but I’m wondering if the compression is affecting her vagus nerve producing the tachycardia and mimicking POTS.

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@suenami21 I’m so sorry to hear about your daughter and how difficult this must be for you as well.

So basically they are looking for pressure changes across the stenosis as proof that the stenosis is affecting the brain. Also, the higher the venous pressure, the higher the cerebral spinal fluid pressure as CSF needs to be about 4 mm HG higher than venous pressure to flow properly. So high venous pressure can results in symptoms of elevated venous pressure if the venous pressure is high enough. A pressure difference of 8mm HG or greater is considered significant. My pressures are written as x/y where x is the pressure above the stenosis an y is below. Here are a few of my numbers: superior sagittal sinus (top of the brain) 13/4, mm HG, Torcular 18/0, transverse sinus 9/0, sigmoid sinus9/0, jugular bulb 16/2. So you can see that there is 8 mm HG or greater pressure gradient upstream of the stenosis.

POTS is often a neuroplastic symptom resulting from a nervous system that has become hypervigalent (which I think happens to most of us who struggle for years with VES symptoms with no relief). Of course it’s possible there is a structural irritation of the vagus nerve. But the heart has receptors for all the stress hormones we put out and that can change heart rhythm. That’s a great thing when we have an actual physical threat to deal with, not so great if we are just sitting down reading a book and it happens. Learning how to turn down the vigilance and increase feelings of safety or wellbeing (even in the midst of all of the health problems) can be very useful. Howard Schubiner is a leading physician in the filed of neuroplastic symptoms has a revised version of his book coming out in a few days and you might find it helpful: Unlearn Your Pain: The Science of Recovering from Chronic Pain, Fatigue, Anxiety, and Depression

by Howard Schubiner MD, Kate Murphy

Wishing you and your daughter all the best.

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That’s so strange having two very differing venograms! Hopefully Dr Costantino will look at the images himself, & if you’re daughter has a consultation with him then that’s certainly something to ask about, and to see if he’ll go through the images with you all to show his thoughts? It’s so hard for your daughter going through all this, and please don’t take this wrong way, I feel for you all, but what you said about the whole family being affected too and getting her through this was a lovely thing to say, it’s so good that you are all supportive- we have many members who are in this alone as family and friends disbelieve them…praying for all of you :folded_hands:

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@suenami21 - Thank you for the extra information about the venogram. I’m sure once you have the report in hand, things will be more clear than they were after a verbal explanation of what was noted.

I forgot to say congratulations to your daughter on her marriage. I’m so glad she was able to accomplish that & a honeymoon while feeling so awful. Onward now to treatment & recovery from what she’s suffering. :heart_with_ribbon:

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Thank you for explaining how the pressure gradients work. I had no idea the CSF was dependent on the venous pressure. You did have a big difference in your pressure gradients - I’m so glad you were able to be helped. It gives me hope that she will be able to achieve the same result. Now its a waiting game for the venogram results to get completed and sent to Dr. Costantino.

Thank you as well for the link to the book on Unlearning Your Pain. I think this is a good thing to read and apply no matter what condition one is dealing with.

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We appreciate your prayers. And yes the different venogram results are frustrating and keep me up at night. I can’t wait to see what pressures were recorded for the latest one. Even if they are flat I imagine there is still a number that is considered too high or am I wrong?

I am sad for anyone who has any of the symptoms my daughter has and any others that people describe on this forum who are dealing with this alone. The strength that it takes just to manage physically, mentally and emotionally every day is incredible let alone having to do research, advocate for yourself with doctors, make appointments, etc. Dr. Costantino and the doctor who did the venogram said this is such a new field that is gaining attention but it takes a long time to gather data and figure out the proper protocols for how to identify and treat the condition. They said they are trying and make progress with each case they encounter but there are so many variables that can be present in one person but not in another. And once they do get a good grip on how to identify who should be evaluated for this and how to proceed, they need to educate other doctors which takes more time. They were trying to explain to us why so many doctors we have seen do not have any idea what jugular vein compression is let alone what to do about it.

So this is a great place to get support whether you have a support system helping you through but especially if you are dealing with this alone. Thank you for listening and we are grateful for the input you and everyone on here provides. :heart:

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@Isaiah_40_31 Thank you so much for your kind words regarding my daughter. :slightly_smiling_face: Her name is Carly btw. Although it rained on her wedding day and that contributed even more to her head pressure, she said it was everything she dreamed it would be and we actually had a great time!! There was so much going on that she was able to distract herself from focusing on her head. They had two weeks in Italy - Amalfi coast - and she said she felt no worse when she was there than normal and the plane ride did not make her symptoms any worse either.

So we are eager to get this report. The waiting as usual is hard. I just want to see the actual numbers and see if they make more sense. The radiologist wants to speak with her again in two weeks and I’m not sure why. Is this a normal part of the process?

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I’m glad Carly had a good honeymoon and that the flight didn’t make her head pressure worse!
Not sure that I’ve heard of a radiologist wanting to see the patient again after they’ve done the report :thinking:

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@suenami21 - Sad that it rained on Carly’s wedding day but such great news that she was able to enjoy her wedding & honeymoon & especially that the pain flight didn’t flare her pain. I’m so glad she’s now able to pursue taking care of her health challenge.

I haven’t heard of a radiologist following up after doing imaging either. Maybe the one she’s seen is just very conscientious?

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@Isaiah_40_31 @Jules @Chrickychricky I just now realized through a bit of research that the dr who performed the tests is not a radiologist but he is a neurosurgeon. So I guess I can see why he wants to follow up with Carly. I’ve never seen a doctor other than a radiologist perform imaging exams of this nature. I learn something new every day.

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That makes sense, @suenami21. I was wondering about a radiologist doing such an invasive procedure as they’re the ones who usually read & interpret the imaging/data not those who administer the test. Good to know Carly was in the able hands of a neurosurgeon. :blush:

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funny, I thought the opposite, I thought it was mainly interventional radiologists who did it so then I googled it out of curiosity and it is common for both apparently. Good to learn new things!

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These are the notes from the Balloon Venogram. Sorry for the length - I cut out alot as it is 9 pages long and includes the angiogram which was completely fine. Would love anyone’s thoughts/input. These pressure numbers are the absolute pressure measurements and not pressure gradients.

NEURO INTERVENTIONAL
Collected on May 15, 2026 1:03 PM
Results New

IMPRESSION:

  1. Compression of the bilateral internal jugular veins at the level of C1, noting
    dominance of the right internal jugular vein. Head turn to the right causes increased
    outflow via an occipital emissary vein due to increased narrowing of the right internal
    jugular vein at C1, but with no increase in gradient.

  2. Balloon test occlusion of bilateral jugular vein with exacerbation of patient’s
    already severe head pressure symptoms (8–>9/10).

  3. No significant pressure gradient across the dominant right and nondominant le!
    intracranial venous systems.

  4. No dural arteriovenous fistula.

  5. Possible mild narrowing of the le! renal vein at it s confluence with the inferior
    vena cava without associated gradient.
    — End of Report —
    Narrative

    EXAM: NW NEUROINTERVENTIONAL
    DATE OF OPERATION: 05/15/2026
    PREOPERATIVE DIAGNOSIS: Dynamic jugular vein compression. Possible nutcracker
    syndrome.
    POSTOPERATIVE DIAGNOSIS: Same, mild exacerbation of severe head pressure
    symptoms with bilateral internal jugular vein balloon test occlusion. No gradient in
    le! renal vein.
    ANESTHESIA/SEDATION:
    No sedation for Venogram, BTO and manometry. MAC for angiogram.
    PROCEDURE:

  6. Cerebral and jugular venous manometry.

  7. Cerebral and jugular venography.

  8. Left renal vein venography and manometry. Inferior vena cava manometry.

  9. Cerebral and jugular venous balloon test occlusion with active examination of the
    patient.

  10. Ultrasound-guided venotomy, right common femoral vein.

  11. Cervicocerebral arteriography.

  12. Ultrasound-guided arteriotomy, le! common femoral artery.

  13. Supervision and interpretation, with requirement of an assistant proceduralist.

    INDICATIONS FOR PROCEDURE:
    Cerebral venous manometry, cerebral venography, cerebral venous balloon test
    occlusion, and cervicocerebral arteriography is being performed for further
    evaluation of the patient’s condition.

    Using fluoroscopic guidance, we selected the right internal jugular vein using

    standard neuroangiographic technique. We double flushed the catheter with

    heparinized saline solution. With the catheter remaining in this position, we obtained

    biplane digital subtraction venography of the head and neck in AP and Lateral

    projections. Acquired images demonstrate stenosis of the jugular vein at the C1 level.

    Under blank roadmap guidance, the balloon guide catheter was inflated at the level

    of C1. Venography was performed through the guide catheter with the balloon

    inflated. Acquired images demonstrate no flow past the balloon. Patient reported

    head pressure went from an 8/10 to 9/10 during the time the balloon remained

    inflated and then back down to 8/10 after the balloon was deflated.

    We prepared a microcatheter and microwire and connected them to continuous

    heparinized saline flush. Using fluoroscopic guidance, we advanced the

    microcatheter over the microwire through the guide catheter into the superior

    sagittal sinus. With the catheter in this position, biplane digital venography of the

    head and neck was obtained in AP and lateral projections. The images demonstrate

    venous outflow via the right internal jugular vein and nondominant left internal

    jugular vein.

    Sequential injections were performed while turning the head to the right showed

    marked decrease in flow through the right internal jugular vein with increased

    outflow via an occipital emissary vein from the posterior third of the superior sagittal

    sinus. Injection performed with head turned to the left also demonstrated some

    narrowing at the C1 level without significant outflow variation.

    After pulling the microwire and attaching the microcatheter to a pressure monitor we

    obtained transcatheter venous manometry throughout the dural venous sinuses and

    cervical veins, including the superior sagittal sinus, right transverse sinuses, right

    sigmoid sinus, right jugular bulb, and right cervical internal jugular vein, as detailed

    below.

    The tabulated results of the venous manometry were as follows:

    Location Venous Pressure

    Mid superior sagittal sinus: 15 mm Hg

    Posterior superior sagittal sinus: 14 mm Hg

    Torcular herophili: 13 mm Hg

    Right transverse sinus (medial): 12 mm Hg

    Right transverse sigmoid junction: 11 mm Hg

    Right sigmoid sinus: 10 mm Hg

    Right jugular bulb: 9 mm Hg

    Right jugular bulb left turn: 10 mm Hg

    Right jugular bulb right turn: 10 mm Hg

    Right mid jugular vein: 10 mm Hg

    Right mid jugular vein left turn: 10 mm Hg

    Right mid jugular vein right turn: 11 mm Hg

    Right lower jugular vein: 9 mm Hg

    Right lower jugular vein left turn: 10 mm Hg

    Right lower jugular vein right turn: 10 mm Hg

    Using fluoroscopic guidance, we selected the left internal jugular vein using standard

    neuroangiographic technique. We double flushed the catheter with heparinized

    saline solution. With the catheter remaining in this position, we obtained biplane

    digital subtraction venography of the head and neck in AP and Lateral projections.

    Acquired images demonstrate narrowing of the nondominant left jugular vein at C1.

    Under blank roadmap guidance, the balloon guide catheter was inflated at the level

    of C1. Venography was performed through the guide catheter with the balloon

    inflated. Acquired images demonstrate no flow past the balloon. Patient reported

    head pressure went from an 8/10 to 9/10 during the time the balloon remained

    inflated and then back down to 8/10 after the balloon was deflated.

    We prepared a microcatheter and microwire and connected them to continuous

    heparinized saline flush. Using fluoroscopic guidance, we advanced the

    microcatheter over the microwire through the guide catheter into the left transverse

    sinus. With the catheter in this position, biplane digital venography of the head and

    neck was obtained in AP and lateral projections. The images demonstrate venous

    outflow through left jugular vein, paravertebral plexus, and condylar veins.

    Narrowing of the internal jugular vein at C1. Also very narrow non-dominant left

    medial transverse sinus.

    Sequential injections were performed while turning the head to the right showed

    some narrowing of the right internal jugular vein at C1 without significant outflow

    variation. Injection performed with head turned to the left also demonstrated some

    outflow via a posterior emissary vein.

    After pulling the microwire and attaching the microcatheter to a pressure monitor we

    obtained transcatheter venous manometry throughout the dural venous sinuses and

    cervical veins left transverse sinuses, left sigmoid sinuses, left jugular bulbs, and left

    jugular vein, as detailed below.

    Left transverse sinus: 10 mm Hg

    Left transverse sigmoid junction: 10 mm Hg

    Left sigmoid sinus : 10 mm Hg

    Left internal jugular bulb: 9 mm Hg

    Left internal jugular bulb left turn: 9 mm Hg

    Left internal jugular bulb right tilt: 9 mm Hg

    Left internal jugular vein: 8 mm Hg

    Left internal jugular vein left turn: 8 mm Hg

    Left internal jugular vein right turn: 9 mm Hg

    We then advanced our 5 french catheter over the glide wire into the left renal vein. We

    pulled the wire and performed single plane AP angiography of the left renal vein,

    which showed some narrowing of the renal vein at it s confluence with the inferior

    vena cava. We attached the catheter and performed venous manometry in the left

    renal vein and the inferior vena cava.

    Left renal vein: 9 mm Hg

    Inferior vena cava: 9 mm Hg

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@suenami21 - I need to learn more about the significance of the manometry numbers as I can only guess at their significance in your daughter’s report. I think @Chrickychricky will be able to give some knowledgeable input regarding that information.

This statement is indicative that your daughter’s right IJV is NOT working like it should.

The narrow jugular along w/ the narrowed transverse sinus could be an indicator that the left IJV isn’t working as it should. Sometimes the sigmoid &/or transverse sinuses become narrowed when IJV outflow isn’t as it’s supposed to be, & sometimes they are naturally more narrow. If they’re narrowed due to lack of IJV outflow, & the IJV is decompressed, the sigmoid/transverse sinuses may also open more fully.

As you likely know, this is the reason that Nutcracker is also a suspect diagnosis.

I don’t know that I’ve helped you at all, but what I read in this report is that your daughter has bilaterally compressed IJVs & needs surgery to open them up.

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@suenami21 I sent you a message about this. thanks

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Hopefully Dr Costantino will review everything including her symptoms and will be able to help :folded_hands:

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@Isaiah_40_31 Thank you for taking a good look at this report and for your insight. I do agree with you on each point and hopefully so will Dr. Costantino. I’ve wondered for a long time if her less dominant transverse sinus was part of the problem. We’ve seen it in other imaging and questioned it’s wispy look - at times it looked like it didn’t even exist - and the neurologists who looked at it said it was probably something aberrant with the imaging itself. They didn’t even consider there might actually be a problem with the bloodflow or vein. We get that sometimes it can be naturally more narrow and that still may be the case with Carly, but since she has been symptomatic it was so frustrating they wouldn’t pursue it further. Only wanted to insist it was a migraine. But fortunately we didn’t give up on the possibility that something was not quite right in her case. When we finally get to the bottom of her condition I am looking forward to contacting all of the doctors she has seen to let them know what it turned out to be and hopefully it will help them help other patients who may present with similar symptoms so they don’t have to go through years of agony.

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