I’m sorry that you’ve had all that testing & the mis-hap with the radiology report, & feeling so rough, especially when you should be looking forward to your wedding!
We have seen quite often that some members feel really rough with intracranial hypertension symptoms, even if there isn’t severe compression, so there isn’t a straightforward correlation between severity of compression & intracranial hypertension… There is something called ‘spikey leaky syndrome’ , where people have IJV compression causing high intracranial pressure, which can then cause a CSF leak if there’s a weak spot in the skull base, so the pressure drops for a bit , then gradually builds again and the cycle continues- it’s a bit confusing with your symptoms as usually with high pressure headaches laying flat are common, and being upright is better, but it can vary a bit, as you say being upright is difficult too? A CSF leak can cause clear fluid to come out your mouth or nose or ears, have you ever noticed this? If you have had CSF leaks then this could explain why your intracranial pressure was normal? Just a thought…
Some members have found improvements with anti-coagulants/ blood thinners like Diamox, Brilinta etc so might be worth asking about this?
I don’t know who you’ve seen, and who you’re due to see in July , but Dr Costantino in NY is very experienced with Vascular ES & C1 compression, and also Dr Lui in NJ, could be worth getting an opinion? Dr Costantino has done a video with some good info here:
Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
Some of our members have military neck, where it’s lost it’s natural curve, and this can sometimes be a contributory factor with IJV compression, so there are exercises which can help restore that if you have it ( has it been mentioned, or do you have copies of any of your imaging?), so here’s a link, there’s some info & exercises about it in this discussion:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
There aren’t really any other physical therapy movements that would help.
You’re not alone & we understand on here!
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