Forgot to say: that seeing other EDSers with the same symptoms and same MRIs proves that we have the EC hydrocephalus. Maybe soon doctors will stop missing it! Think of how many lives would made better!
Yes, Dr Diana classes the hydrocephalus as ‘External Communicating Hydrocephalus’. The problem is, when radiologists are ‘looking’ for hydrocephalus, they look for enlarged ventricals, which of course we don’t have, usually. Our hydrocephalus is ‘Communicating’ i.e. free flowing, NOT BLOCKED anywhere, well not within the brain anyway.
As you know, the only ‘blockage’ of the functional flow of Cerebro Spinal Fuid (CSF) is usually where the head meets the neck, when the lowest part of the hind brain, takes up residence above (or herniates within) the hole in the bottom of the skull, where the CSF needs to flow, to carry out it’s function along the spine. This hind-brain acts as a ‘bung’, which stops or hinders the natural flow of CSF and can allow a build up of pressure within the skull.
Additionally there is a blockage (or blockages) where the CSF would normally drain out of the skull, once having done it’s job.
Doctors say, ah well if this person may have raised intracranial pressure, we’ll order a lumbar puncture, to check it. This procedure is really NOT RECOMMENDED, as the reduction of spinal CSF pressure can worsen any herniation of the hind-brain (as the pressure above it is higher). This can cause MUCH worse symptoms! The LP result is also a false result
So the problem is, how to measure intracranial pressure non-invasively. Well, I’ve toyed with things I’ve come across and I think there’s a way. It will certainly give a rough guide anyway. I remember telling Henry40 about it but I can’t find it on the forum, I’ll try and locate it – Watch this space!