My neurosurgeon has diagnosed me with 'pre hydrocephalus'. It's on its way. Saw the annual MRI scan and the 1.9 cm pineal cyst from 2018 has grown, beginning to block and ventricles have begun to swell bigger.
I already suffer chronic and hemiplegic migraines and the symptoms from those mix with the symptoms of hydrocephalus so can't be sure when I will no longer be 'pre'.
Anyone going through something similar?
Thanks for reading.
Yes! I have obstructive hydrocephalus. In my case the cause is an arteriovenous malformation (AVM) deep in my brain. It blocks the ventricles and stops CSF draining away normally. First signs of it were headaches at age 12 which got worse and were critical by age 14.
Thank you for sharing. makes me feel better that I'm not alone. being 'pre' makes me feel like in limbo cos not sure I can call myself having hydrocephalus. but I think I can when telling people.
Yeah I think you're right. It must be awful for you knowing its on its way. But maybe that'll at least give you chance to get your head around it (pardon the pun). I know what you mean about feeling alone too. When I was diagnosed (1987) there was no internet, and I didn't know if I was the only one in the world with this. Although I wouldn't wish it on anyone its comforting to know you're not the only one. x
I had my post-TBI neuro follow-up last week after waiting 18 months in which time I’ve suffered constant headaches. My GP had arranged for a scan in July which was ‘satisfactory’. I isolation the scan did look ok but once compared with the original from 18 months ago it definitely wasn’t. The ventricles have swollen quite markedly. I have to be scanned again in January then a decision will be made. It may be that a lumbar puncture will be enough to drain CSF and reduce pressure or I may need a shunt. I’m angry that I’ve suffered chronic headaches for so long with no cause being identified.
I can relate. There's no cause for my migraines and my hemiplegic migraines seems to be in my DNA and no treatment has worked. It must be frustrating to wait for surgeons to actually make a move while waiting suffering and in my case I guess they want my symptoms to expand further and get worse.
what angers me most is that Covid is still being blamed for ongoing delays, which is nonsense.
Hydrocephalus NPH
Hydrocephalus fatigue and muscle weakness.
Living with brain injury caused by hydrocephalus
Pre Brain Injury problems.
it just occurred to me
