I am new to this forum. I have a continuous pressure headache for 1.5 years along with other symptoms. I had 2 lumbar punctures (36.5 and 25), which led me to being diagnosed with IIH. I was told this is ‘idiopathic’ and it has no physical reason. But symptoms I will add below made me suspect a venous outflow issue.
I finally had a CTV scan. But the doctor told me my internal jugular vein is ‘mildly’ obstructed by C1 and he can’t say for sure that is causing my symptoms (and IIH). There isn’t much obstruction by styloid process. I can’t blame him cause I agree - my vein still looks fairly ok, not complete obstruction. So its very hard for me to make the decision to have C1 shave surgery. I wanted to have your opinions on my scans and symptoms as I feel so lost.
-7/24 constant pressure headache for 1.5 years straight. It didn’t lift for a split second.
-Neck stiffness, and pain right below where my skull ends on left side. This is severe and 7/24 along with my headache. It hurts if I apply pressure to that spot. It feels always really tight, and goes numb/tingly from time to time. I am not able to turn my head to left. The left side of my lower face also went numb a couple of times.
-Massive brain fog. Cognitive decrease. Feeling almost drugged, like not enough oxygen is going to my head. This made it almost impossible to do my job.
-Extreme jaw pain. I even got rid of my wisdom teeth thinking that was the case. I got masseter botox and had a TMJ splint done by orthodontist. Nothing helps and my jaw is so sore. Impossible to open my jaw more than 2 fingers.
-Hearing issues and pressure in my ears like my ears are clogged in a plane 7/24. I got my ears checked by ENT and was told my ears are completely fine/no physical obstruction.
-Dissociation, depersonalization. I started feeling out of my body.
My other option is to have a shunt surgery to drain my excess CSF. And I am really scared of this as its a life long foreign object that will go in my body and can get infected.
I appreciate all opinions and suggestions as to whether my symptoms can be caused by mild IJV compression by C1.
I assume you’ve tried Diamox? I have similar symptoms and got the IIH diagnosis, but the IIH drug treatments did nothing for me. My understanding (not a dr so take this with a grain of salt) is that the drugs are pretty successful with traditional IIH but if you have some sort of obstruction then they are far less helpful.
Also you could have another type of obstruction that can cause this. For example I had a stenosis in my transverse sinus which can be a cause of IIH as well.
My Dr also did a dynamic venogram where they measure the pressure in your veins both above and below the obstruction to better determine if that obstruction is causing major pressure issues.
Hi, I am the same I was given Diamox after my IIH diagnosis but it did not help with my headaches at all. After I told doctors they said “if Diamox doesn’t help you then it means you don’t have IIH”, which I don’t understand how it can make sense as my MR showed obvious signs of increased pressure along with my LP reading of 36.5. Another sign that does not match with traditional IIH symptoms is my headache does not get better when I lay down, in fact it gets a bit better. And the doctors again told me “you can’t be having high pressure if laying flat makes you better”. But from what I’ve read people with IJV compression feel better laying down (better drainage?). My imaging on my other side shows barely any compression, but to be fair most of my symptoms are on my left other than head pressure which is equal around my head. All these make me think it really has something to do with IJV compression. Unfortunately my doctor did not offer a dynamic imaging or ultrasound
I forgot to add, my imaging showed 60% narrowing of my transverse sinuses, but my doctor said its a chicken-egg relationship where the increased pressure in brain can itself cause the transverse sinuses to narrow down. To test this theory, I had my second LP where my opening pressure was 25 and they drained it until 15 cm. Directly after the LP they put me in an MRV to see if my transverse sinuses were still narrowed when I had normal pressure (15). The MRV showed no narrowing of transverse sinuses, so they concluded I don’t have an anatomical issue of my transverse sinuses being narrowed but my brain pressure was causing them to narrow down. Hence a solution like stenting the transverse sinuses would not make sense for me
I see. I had physical blockage of my transverse sinus (some calcium granules or something). It’ll likely come down to taking a risk on having the surgery despite not knowing if it will really resolve the symptoms. But if everything else has been ruled out what else could it be?
I’m sort of like that myself, the Dr. thinks it’ll help me but there’s no guarantee. Can’t be sure if the symptoms are caused by the IJVC or not.
I’m far from the smartest person in here, so maybe someone else has some thoughts.
@eh0 - As we’ve said, some people appear to have mild compression yet symptoms are terrible where others appear to have significant compression but are asymptomatic. We don’t have an explanation for this. Your symptoms clearly point to the fact your compression is more severe than it looks or that your body is more sensitive to the compression than one might expect just looking at your imaging. Additionally, doctors often see during surgery that a situation is worse than it appeared via imaging.
You have substantial collateral vein development on the left side & some on the part of the right side I can see in your imaging. Extensive collateral vein development causes skull base pain & is evidence of significant IJV compression as those extra veins enlarge to try to assist the drainage of blood from the brain which the IJV isn’t able to adequately do. You can also see in your axial CT view that your left IJV is substantially compressed vs the right side.
@RickAZ has offered you some good information regarding getting a dynamic venogram with manometry (pressure gradient measurements) for a more definitive picture of how bad your compression is. I can’t remember how difficult those are to get in the UK, though.
Have you considered seeing Mr. Axon? I’ve forgotten.
Hi, Agree with all @RickAZ and @Isaiah_40_31 have said. Did the doctors ever tell you whether your cerebral venous drainage was left-side dominant on your brain scans ? If you are, it may explain why your symptoms are so severe given that you have only left sided internal jugular vein compression
As @Emerald says, often people have a more dominant IJV & a smaller (hypoplastic) one, so if it’s your dominant one it could explain why your symptoms are worse…you can usually see on the CT if one looks narrower (but without obvious compression). Dr Aghayev hopefully will be able to give you advice about a C1 shave.
I understand your concerns about a shunt, we’ve had a discussion about that recently, Merl, @Mod_support , has had many years of dealing with treatment for IIH…You can read this discussion if you’re interested: hEDS, ES and lumbar shunt - Welcome / New User Help - Living with Eagle
I don’t know if it’s possible to do a dynamic venogram in the UK, or whether Dr Aghayev ever orders this…
