The New Plan

So I've been playing around with the settings on the shunt lately, trying to get head pain relief. In April the neurosurgeon's PA took me from a shunt setting of 150 to 110 and after adjusting through the low pressure transition period of about 4 days (awful and painful) I had exactly 1 week of bliss. No head pain, no symptoms at all. Then the pressure built back up inside my skull. The spinal fluid had no where to drain again.

So the PA brought me back in on May 5 and took me from 110 to 80. There was no dramatic period like there was a month prior. It was like nothing changed. I kept waiting for the dreaded low pressure symptoms to come and they didn't. But the PA said to give it 2 weeks before exploring more options.

So I waited my 2 weeks, and I asked for another appointment to adjust me from 80 to 50 and the PA said no. She said we need to get another lumbar puncture to check my pressure in my head. She referred me to my regular neuro for the lumbar puncture. Then she starts talking about how the neurosurgeon wants to do intracranial pressure monitoring and maybe even replace the shunt! Whoa! Let's not get carried away!

I saw my regular neuro Thursday and they said no to the lumbar puncture. Instead they want to do a head CT to see if I'm being over-shunted. Hmm...I hadn't even thought of that. Good catch, neuro!

I mentioned to the neuro about the neurosurgeon wanting to do the ICP monitoring and replace the shunt and the neuro agreed that the ICP montioring is a good idea. Well, ok, I'll consider that my second opinion and maybe that's not so unreasonable. But I am not too keen replacing the shunt. That just seems too drastic.

So step 1 is getting the CT scan to check the size of my ventricles in my brain to see if I'm being over-shunted (shunt draining too much CSF from brain). That's reasonable. Non-invasive.

Based on those results, we will either move to ICP monitoring, which does involve drilling into my brain, which freaks me out a lot, or try setting the shunt to 50, which does not freak me out at all, or try setting the shunt back to 110, which again, has no freak-out factor.

I'll just through step 1 of the CT scan and go from there.

In the meantime, my awesome staff at the regular neuro's office does a stellar job of keeping me supplied with pain control meds. Gotta love 'em for that.

I hope it all goes smoothly, with a minimum of complications and relief for you, Lynelle.

Cheryl

I respect you so much for taking control of your own healthcare choices and for taking one step before consideration of other steps. I just respect the heck out of the way you are approaching this. Strong woman, smart women. I salute you!

Keeping you in my prayers, Lynelle.

I agree with Richard on your strength and perseverence. You're an inspiration.