Increased Intracranial Pressure-What?

[HelpPOTS]

Hi all about three months ago I was at the hostpital to get surgery done on my tethered cord. I am seeing Dr. Fraser Henderson and we are trying to rule things out (I do not have a chiari malformation). Anyway, while they did a standard procedure spinal tap my spinal pressure came back double as normal! He immediatly put a LP shunt in after the first surgery. Now, three months later he is baffled how it didn't help or affect me at all. He wants to get a test done to see if it is working but I am still in the dark as what all this means. He diagnosed it as psuedotumor cerebri but i think there is a cause and it isn't just spontaneous after all the other stuff i have got going on. I feel like I actually don't have ENOUGH spinal fluid because I can't shake my head, go over speed bumps, and bend over without it hurting so much(feels like lack of shock absorbtion). So could someone explain what this all means and what it is related to? I think something is blocking it or something for pressure to build up in the spinal canal

BTW I have POTS, an unknown connective tissue disorder and a retroflexed odontoid

[Friedbrain]

I don't know, but I'm interested in learning more about intracranial pressure. (ICP)

Fwiw, I've experienced a CSF leak and it was AWFUL!!! After a lumbar puncture that didn't seal closed. I stayed in bed in the dark most of the time, but a few seconds after standing up, it felt like a jumbo jet had landed on my head. I had to go back to the doc for a blood patch.

But I wonder if some of my problems aren't because of ICP that is too high (so I'm researching it, among other things). My initial symptoms (before my head blew up-the seizures), I had purely neurological problems that could have been caused by *something* pressing on the delicate nerves. I thought maybe inflammation at the time because steroids seemed to help. But if there was pressure buildup in my head, I seems logical that it could've caused problems with optic nerve, cranial nerves 3 and 6, nerves influencing balance...all these things were wacky at the time. "6th nerve palsy" (main diagnosis initially, before seizures, 8ys ago) "classic sign of raised intracranial pressure.

Plus the ICP is related to the body's blood pressure (I don't quite understand it, yet; working on it!); and ICP can be lowered by raising the head of the bed (many of my problems are at night, and are improved by raising my head).

Sorry I don't understand it all yet.

[comfortzone]

I don't have any answers but I will say that someone - anyone that's knowledgeable that works in that office should be willing to help answer your questions -- or if not that -- then arrange for an in person or telephone call consult with Dr. H himself. It's your precious life that you are entrusting him to care for - so good communication is crucial to a good working relationship. As he is a very busy surgeon you might ask the staff what the best way is -- or what is the doc's preferred way to help a patient gain clarity as to a sticky situation. If he is not ready to say what's going on because he simply doesn't know -- that's fine - he should say that -- but beyond that .... if you need clarity on the basics -- it should be provided to you in conversation or written material.... imho... Best wishes for a quick and accurate resolution to this problem! Keep us updated!