@Emma123 If you have your Jugular Vein compressed by Styloid/C1, then IIH can potentially result from the outflow obstruction since IJVs serve as the main drainage of the brain. So yeah, IIH can be caused by the Jugular Variant of ES (usually not the classic ES). There are also a number of studies that link IIH to Jugular Vein Narrowing regardless of the cause (Styloid/C1/clot/tumor…etc). We also have seen a number of folks that had experienced improvement after their IJV compression was removed. IIH can also be caused by narrowing in the upper brain sinuses mainly the transverse sinus or in rare cases sigmoid sinus. Where there is no narrowing on either the brain sinuses or Jugular Veins, it is usually called idiopathic (unknown cause or origin of the disease) and it is where the I of name came from Idiopathic Intercranial Hypertension (IIH). CSF Leak can also result from pre-existing IIH due to the CSF fluid pressure exerted on the dura and the skull. If there is defect or tiny tear on the skull bone, it usually leaks there.
So coming to your question about me. I do suffer from IIH without Papilledema. This is when they can’t find Papilledema on your optic nerve which is usually the gold standard for diagnosing IIH along with lumber puncture. So when they can’t find that, they have name for it - Idiopathic intracranial hypertension without papilledema (IIHWOP). I do have other telltale signs such as Partial Empty Sella, Enlargement of Optic Nerve Sheath by CSF…etc. I also have all the symptoms of IIH. Mine is thought to be caused by Styloid-C1 compression of my main, dominant left Internal Jugular Vein. My right Jugular Vein is small and is hardly draining my brain. I also have intermittent CSF leak through my nose and ears (which is not that bad since they lower my intercranial pressure hence no papilledema) which I think is caused by raised intercranial pressure due to the compression of my main left IJV. I do have tightness and stiffness at the base of my skull. I do have neck pain though.
In your case, it is not clear why, after the removal of the compression, you still experience IIH symptoms. I can only speculate but if your left IJV remained narrowed after the operation or C1 was compressing it more than the removed Styloid, then it can definitely happen. You could also have the idiopathic one which is usually linked to overproduction or under-absorption of the CSF. This is all a guess but one thing you need to make sure is to find whether your IJV is still narrowed after the operation and if that is the case, then it is still potentially causing your IIH. I know you said, you felt better after the ballooning which points to the compressed left IJV as cause of your IIH. Do you have any previous contrast CT or MRI you can share ? Had Dr. Hepworth ruled out other narrowing in the upper sinuses such as transverse sinus?
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@KoolDude you are AWESOME! Thank you for answering all this in such depth- and in a way that’s easy to digest. I think I also have IIHWOP then.
I do have a CT scan I will dig up tomorrow to share here. Dr. Hepworth hasn’t brought up anything about narrowing of upper sinuses. I’m not sure if this is because my sinuses looked good during that CSF surgery, so I will absolutely be asking him about that next time I see him. I am also going to request a repeat venogram, so if it is the case that my vein collapsed after surgery, I can get it taken care of.
The vascular surgeon did say that I have narrow veins in general, so now wondering if maybe that is also an issue?
I can’t thank you enough for sharing all this info, and your personal experience. While I don’t wish this on anyone, it’s good to know I’m not crazy and others have had similar experiences. I’ll definitely share my CT scan as soon as I find it on my hard drive!
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I’m sorry I have not read the whole thread, but your case sounds remarkably similar to a story on Facebook. In that case, the woman experienced several days of symptom relief after styloidectomy and angioplasty before a full relapse. She was then stented and made a full recovery. Dr. Nagarsheth who performed the operation said that depending on the degree and duration of IJV compression, the vein can become diseased and fibrotic requiring some assistance to remain open even after the external compression is removed. He posted the case on instagram here:
https://www.instagram.com/p/Cb1RGmFs6C7
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Thank you, @coldbear. Really appreciate your input! We’ve missed you a bit on here but know you’re busy & dealing w/ your own ES journey. 
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@coldbear thank you!! This gives me hope that maybe it is the same situation. As silly as it sounds, just a collapsed vein would be a relief. I’m planning on getting a repeat venogram to see, and I think they said they would balloon it one more time if it’s collapsed, before trying a stent. Thank you for pointing me to case study. I’m definitely showing it to my surgeon!
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@KoolDude do you know what the easiest way to post the CT scan is? I only see my photos are .dcm, so I could convert them all, but wondering if there is something easier I’m missing.
I also wondered if you had heard of an ear dehiscent surgery. Hepworth brought this up to me before surgery as a possible next step if my symptoms didn’t chance from the styloidectomy. Not sure if this is a common surgery, but from my googling it seems maybe aimed towards people with IIH?
@Emma123 there are number of ways and methods of sharing CT/MRI imaging. I find this site (https://www.dicomlibrary.com/) to be the best way of sharing CT/MRI images anonymously in public. It strips all the fields identifying the patient before uploading hence anonymous sharing. The only downside to it is, it takes bit longer to upload images due to preprocessing of the images to remove any patient identifiable fields before uploading. The shear size of dicom files being uploaded is also another factor for the slowness. Other than that it is good way of sharing without exposing your identity to anyone. It is also very easy to upload images and only takes 3 steps to share (comes with a quick intro video as well).
Thanks to @coldbear who first shared his images through this site and frankly introduced it to me. It was only then I came across it and ever since found it very useful in sharing images anonymously
I am not really familiar with this surgery. never did any research on it.
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No problem! I think she got the stent about a week after the original operation. If it were me, I’d probably wait a few months to see how things evolved unless the symptoms were truly unmanageable.
Is the SSCD operation being proposed because you have pulsatile tinnitus? This video is great for that topic:
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I do have constant tinnitus, but it seems Hepworth was thinking more to address my constant pain/ear pressure and fullness, dizziness and other symptoms that seem more related to my IIH? That being said, he never did say exactly why. He’s a bit of a cryptic talker most of the time haha.
I will take a look at the video! Thank you for sharing. Love all the resources! The best thing I can do is arm myself with the most info possible =)
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