Mom’s Going Back to Canada

Mom is going back to Canada tomorrow after a 2-week visit here, to help us out during and after my ICP monitoring. I’ve said it already, and I’ll say it again:

I really appreciate it, and thanks so much, Mom. 


On the Monday (4th day of monitoring on Feb 20), I’d hit a 10 on the pain scale and didn’t know what else to do because the nurses were being…shall we say… less than vigilant about getting me medication for it.

I scribbled a note to ask them to let my mom and DH come in outside of normal visiting hours, and they did. The advantage of their timing was that they also got to speak directly to my neurosurgeon when he popped in to see me (“Give her pain meds, dammit!”). It worked.

I think Mom’s visit made things much easier on DH, because it was the first time I’d had a major neurosurgery on my cranium with DH, and we didn’t know how quickly I’d be back on my feet afterward because the ICP monitoring wasn’t going to actually improve my condition – just rule a cause out.

Still feeling crappy, but hopefully DH got a bit of a break.

Shit My Neurosurgeons Have Said: “Choke Yourself!” (NSFW)

I’ll be going into hospital this Friday to have Intracranial Pressure monitoring done. It’s scaring me, so I went on Facebook looking for hugs. Or giggles.

In a Facebook group for low ICP and CSF Leaks, someone started a humour thread:

“The things consultants said that made you laugh/speechless?”

I’ve got a few of those!

My Canadian neurosurgeon did a shunt tap and measured my intracranial pressure with a needle and manometer in 2007: “I don’t think I’ve ever heard you say, FUCK! before.”

Another one from my Canadian neurosurgeon, on asking me to perform a Valsalva maneuver: “Choke yourself!”

(Shades of Full Metal Jacket, anyone? NSFW.)

I looked at him like he was nuts, and asked if he was sure he wanted me to do that. He did indeed, but he actually meant, “press down on the jugular/carotid on both sides”: it temporarily relieves my symptoms, which suggests overdrainage.

Some really dumb people have asked if I’m an autoerotic asphyxiator, and of course I’m not. I don’t touch my windpipe, impede my breathing, or in any way derive sexual pleasure from this. It’s a simple Valsalva maneuver – that’s all.  People have sick minds.

Rhys Morgan’s “Remission” – My Adaptation

Rhys Morgan – The Welsh Boyo blogger famed for cracking down on Miracle Mineral Supplement (MMS) and other alternative medicine quackery, wrote this brilliant post about his remission from Crohn’s disease. I asked him if I could adapt it for my own chronic neurologic and neurosurgical stuff, and he gave the go-ahead. 

For the last time, before I get any more stupid comments suggesting some ridiculous quacky cure…

Unless you are a neurologist/neurosurgeon or some expert on migraines or hydrocephalus, I don’t care what cured your friend when you suggested it to them, I will not use your cure/treatment.

This includes:

  • Standing on my head – with or without my bum against a wall and my legs raised over my head (yes, someone has actually recommended that to me!) 
  • Herbs
  • Essential oils
  • Aromatherapy
  • Unproven treatments
  • Cutting out dairy (sugar, chocolate, coffee, tea, babies, red meat…)
  • Actually, cutting out anything from my diet

The main reason for this is because I’m on a treatment that is (sort of) working.

I am in remission. But my headaches cannot be cured. They’re not the kinds of headaches normal people get.

I like my milk. I like my food. They do not cause me any headache-y issues.

None. Nada. Zilch. Nothing.

Therefore, cutting them out of my diet would be pointlessly cruel to myself. I don’t need to cut them out, therefore I won’t.

A shunt for my hydrocephalus is not the same thing as a stent. Every time someone confuses these two things when asking questions about the shunt, and I have a headache that is a 7 out of 10 on the pain scale, it is very aggravating and tiring to have to explain the difference, again. I’ve provided an explanation of the difference between these two devices here.

I don’t go round trusting any ol’ person. If I want any serious advice on my hydrocephalus or treatments for it, I will go to my doctor. Not the internet.