@Dontgiveup I think it might have something to do with the Vagus nerve than IIH as it regulates the autonomic nervous system which controls your blood pressure, heart rate and breathing. Again, I am just speculating here, do not have the evidence of either cases. CSF leaks can occur with high pressure @Eaglefatigue explains and you will need special CT to detect if that exists. It can be seen with normal CT with contrast, if you are leaking it in the nose area since there are thin bones separating them, they can leak through it but leaks can happen anywhere from the dura lining of the spinal cord to skull of the brain. So it is like finding a needle in a haystack. You need a good degree of suspicion.
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What a discussion! Thank you all for sharing what you know at a much deeper level than we usually see on here. I feel a bit overwhelmed by how much I donāt know as I read through your posts. Havenāt had time to even consider looking at all the links posted. The bottom line, I feel, is the human body is massively complex, & there is much that has been discovered about its function & sooo much more that we still donāt know. Itās amazing to consider how advanced the resources we have for diagnosis & treatment are compared to even 10 years ago.
Thank you all for sharing what you know, though much of it is a bit over my head. Thereās always something new to learn!!
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Hi @Dontgiveup
I just wanted to reassure you about the catheter venogram. I had my 2nd last week and itās actually quite cool. You can hopefully see the screen and watch as they inject the dye. Itās all fascinating stuff and not too uncomfortable. There were about 8 people in the room too which is quite reassuring, with 2 reading out numbers which were presumably the different pressures. Donāt rush recovery though as I got some discomfort in my groin after I think from doing too much too soon. Also black bruising the first time a few days after (none at all this time) which they said I should have been in touch about so something to bear in mind. Plus do as advised and drink plenty of water after - made a difference 2nd time. Good luck!
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Hi again. Iāve been diagnosed with probable spontaneous CSF leak due to raised intracranial pressure. It started 10+ years ago; before that I used to get terrible postural headaches. I have constant fluid down the back of my throat, and sometimes my eyes seep constantly. Occasionally I get clear fluid draining from nostrils. @Kooldude is right I think that this is often missed because it alleviates pressure enough, albeit temporarily, so that an MRI shows normal, as mine was with just slight flattening of eye. Dr Higgins, who I am see, wrote a paper on it -
A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spo (tandfonline.com)
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Same here! 
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This is so helpful thank you @KoolDude. I was just starting to think please just stent my jugular so itās interesting to read this. Iāve had ballooning of jugular vein but it only gave mild, temporary relief and I just couldnāt see how that would make a difference if the jugular was squashed between two bones. Thanks goodness Iāve just been told they are going to remove my transverse process (tip of atlas) and styloid process - the serpent @Isaiah_40_31 ! Even though the styloid isnāt actually compressing the jugular they want to create more space, which makes complete sense to me. Iāve also recently been told I have compression of the left brachiocephalic vein in the chest, so the jugular is backing up on the left too. Just something to bear in mind for other people whoās jugular compression seems mild; it may be a combination of things and doesnāt mean the styloid process isnāt involved.
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Hey DogLover,
Im Merl, Iām a member of the modsupport team here. I donāt have Eagles but brain tumour that has messed up my CSF flow and I now have a shunt to regulate the CSF pressure.
Iāve had high (REALLY high) CSF pressure and low pressure, neither of which Iād class as āFunā and some REALLY weird symptoms. Post craniotomy I could hear the fluid squirting out under pressure. The āsquirtingā reduced as the craniotomy sealed up, but the symptoms didnāt. With the low pressure it felt like my eyeballs would explode, just WOW, intense.
Iāve had many a diagnosis or pseudo diagnosis or (excuse me) straight out guesses and been given the IIH diagnosis too (Thanks for that link too. Very interesting) There is a test they can do where they inject a radioactive dye into the CSF, make you wait an hour, then scan you and it shows all of the channels where the CSF has flowed. This is a test Iāve had with them gaining access via the shunt and Iām unsure if such a test can be conducted via something like an epidural or not, but they must have alternatives to follow CSF flow. Itās something youād really have to ask a neurologist about.
Have you been given any suggestions for sealing the leak? Is sealing it a possibility?
Iām very interested to hear the outcome.
Merl from the Modsupport Team
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@DogLover Good vascular surgeons DO NOT stent extrinsic bone compression of the Jugular Vein without first removing the compression. Secondly, Jugular Vein has unique physiology (closed in upright, opened in lying) which can make it prone to clots when stented. Thirdly, since it regulates the pressure in the brain (ICP) by closing when upright, nobody knows what the stent that keeps it open regardless of posture will do in the long run.
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@KoolDude - More great info. I know there are questions about stent use & reliability but you put one & one together in discussing how a stent affects the ability of the jugular to collapse as it should when standing. I hadnāt thought that scenario through. Thx for giving me clarity.
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I certainly hope your surgeon will NOT remove the entire C-1 transverse process but will only shave off the minimum amount necessary to create the space the IJV needs. Your skull sits on C-1 (thatās why itās called the āAtlasā), & there is a balance between the two sides which is, at least in part, determined by the transverse processes of C-1. If one tp is completely removed, I just canāt help but think that opens a can of worms for some skull/neck instability. Minimal removal of the tp most likely wonāt make a noticeable difference.
Pretty sure the removal of transverse process is hardly possible, as it anchors quite a few muscles moving the head
Does anyone have a good diagram of all of the muscles and ligaments attached from the skull to the neck vertebrae?
Dr Axon says he doesnāt cut through any ligaments in the neck when shaving off the transverse process, but there must be ligaments attached to the C1 transverse process right?
Only had a quick look online; there seem to be some ligaments which are more inside the vertebrae- the transverse ligament, Alar and Apical ligaments- they look like theyāre in between the vertebrae but not attached to the processes.
and then other ligaments like the Anterior Longitudinal Ligament in the picture cover the anterior aspects of the vertebrae. The grey ligaments in the image are Intertransverse ligaments, which runs between the transverse processes of adjacent vertebrae.
So looking at that image, & from what Iāve read about shaving the transverse process is that they just shave a groove into the process, to make more space for the blood vessels, they donāt chop a bit off the process.
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Hey @KoolDude as jugular compression/venous congestion can cause symptoms like ataxia and muscle weakness and stiffness. Would it also cause stiff joints that end up cracking a lot?
@Dontgiveup I really do not know. I have not seen any study linking stiff joints to IJVs. I canāt think of any mechanism how that can happen but Hey I am not doctor so really do not know.
Hi Merl
Sorry for late reply; had a bad week!
That sounds like a bit of a nightmare having to use a shunt to regulate your CSF pressure. I know they use blood patches sometimes to try and seal leaks but I believe in cranial leaks are quite hard to find and fix. Did they find your leak? I think they also do surgery sometimes. Hereās a link to a lady who had surgery, although that was for a CSF fistula - maybe something to consider?
Aliceās Story - Spinal CSF Leak Foundation
Have you tried this site? Itās mostly for spinal leaks but useful for general info.
If you donāt mind me asking what were your symptoms for high and low pressure - especially the weird ones. I feel as if I might fluctuate between high and low and Iām just wondering which is causing what symptom. Iām having a lumbar puncture on Thursday so this might clear things up a bit but I was very interested to hear you have had very low and very high pressure.
The idea is that if they can clear my jugular vein, then the pressure will decrease and the leak will heal by itself I believe. It will feel like a miracle to me to be honest to feel even a little better.
Thereās a chiropractor in USA who developed an upright scan to measure CSF flow which might be of interest.
Trauma Imaging Foundation (traumamri.org)
Hopefully removal was just his way of putting it. Itās Mr Axon so Iām sure he means shaving as he has done quite a lot of these.
Iām very interested in the jugular vein collapsing and itās something Iāve researched quite a lot, as I donāt understand why my symptoms worsen throughout the day if my jugulars are collapsed in the upright position and the majority of drainage is through the vertebral veins. Itās one of the reasons Iām not that optimistic that this op will work for me. Maybe I just darenāt hope!
@DogLover maybe the symptoms get worse due to the stress on the neck?
It can cause a) tension in the neck muscles, leading to compressed blood vessels, b) shifts in spine, possibly affecting vertebral blood flow (arterial and veinous)
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