An Update on Our Journey Through NPH

A couple months ago, I wrote about my mother’s slide into Normal Pressure Hydrocephalus, her diagnosis, and her surgery to install a shunt to drain the excess fluid from her brain.

I am back to report that she is doing better and better, 4 months after the surgery.  She has moved back into assisted living, she is reading again, going to the wellness center to exercise, and using her iPhone again.  She is so much more engaged in day to day activities, and what is going on with the rest of the far-flung family.  She goes shopping with me, and helps get meals ready at home.   These were all parts of her life that she had lost.  Physically, the incontinence problem is much improved.  Her mobility and balance are all on the upswing.  Often she leaves her walker parked in a corner while she moves around a familiar space.  And she is talking about traveling again.

~Mom is enjoying the spring sun at Indiantown Gap, about 2 months after the surgery~

As I have thought about our journey, I am continually amazed at how slowly and insidiously the problem crept up on her and us.  In my previous post, I wrote about what NPH is and how it progressed for her, and how it was treated.  That doesn’t speak to how insidious the condition can be.  So I looked up a few statistics on brain function and fluid capacity.

Did you know your brain makes 500-700 milliliters of cerebrospinal fluid every day?  To put that volume in perspective, remember that a pint–2 cups–is about 500 milliliters.  (Sorry–the science world and the medical world move in the metric system, even if the rest of the US does not.)  The volume of fluid in a normal brain and spinal column (they are connected) is only 100-150 milliliters. That means that the entire volume is replaced 3-4 times per DAY.

Let that sink in for a minute.

So if you only have 100-150 milliliters of fluid in your brain, and you make 500-700 milliliters per day, even a tiny amount of extra retention of fluid will add up pretty quickly.  Just because the math is simple, think of a retention rate of 1 milliliter per day–which would be 1/3rd to 1/4th of a milliliter per total volume replacement.  In 50 days, you will have increased the volume of fluid by 50 milliliters, an increase of 30-50%, each one of those extra milliliters putting pressure on the brain.   (If it helps, think of a bucket with a hole in the bottom, where you put in more at the top than can drain out of the bottom.)   I suspect the actual retention rate is far less than that, especially in slowly developing NPH, and that is probably why it is so insidious.

One of the diagnostic techniques is to remove an ounce or so (about 30 milliliters, just to keep the units consistent) of spinal fluid, and to observe any changes in the patient.  Some will be immediate and dramatic, if NPH is really the problem.  (Remember, this condition mimics dementia, Parkinson’s disease, and other neurological conditions.)  In Mom’s case, the doctor removed an ounce of fluid via a spinal tap.  Within a matter of minutes–mere minutes!!, Mom was noticeably more conversational, more mobile, and had improved cognition and memory.  When we asked her how she felt, she said it was as if a fog had been lifted.  The next day, she had an MRI, and followed the technician out of the procedure room to the waiting room, without her walker–a distant of 40-50 feet.  This was a woman who a week before was barely able to walk 6 feet without the walker!

That experience alone went a long way to convincing us we were onto something, and the results of the surgery have confirmed it for us in spades.

So where do we go from here?  Mom is thrilled with how good she feels.  She is talking about traveling again, to visit family across the country and maybe to spend Christmas in Italy, with the grandson whose job will take him there.  She wants to drive again, and move back to her house.  Some of this may be realistic, some not so much.  She still has a long way to go to build back her strength and stamina, both of which she lost in the months of languishing with NPH.   We will take it one day and one month at a time, but it is all positive these days.

As for me, Hubby and I are taking a footloose vacation this summer.  We  feel comfortable doing that now.


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