You Don't Know What You Don't Know

Daughter Julie who has had a shunt (since birth) for taking fluid build up/pressure off her brain is again having headaches.  Always worrisome since neurosurgery is no walk in the park for her.  It starts off the same way each time she needs a shunt revision, generally caused from protein building up in the tubing leading from the brain to the heart (or lungs, or abdominal cavity or wherever it happens to be placed from the last revision).  The headaches are intermittent, since the blockage in the tube can often be dislodged almost spontaneously, and with no apparent reason for the build up to be cleared by her body's defenses.  But at some point, perhaps a day or two after a shunt headache begins, sometimes after a week or ten days of intermittent headaches, the blockage will not pass down the tubing, allowing for the CSF to be shunted off.  She has had so many revisions and hospitalizations that we have lost count: over 100 at least.  CT scans are always taken, and the results of these scans, to this point after her entire life, have always shown "no appreciable difference in the suture line", although the build up can be so tremendous that she will be in a coma-like state. Mind you, I am not using medical terminology, because by this point you would have almost certainly given up on reading this post.

Julie and Muggsy, 2008

And for over five years, she has been mostly doing fine with this particular shunt and tubing.  And her breast cancer seems to be at bay.  She has a husband who is very supportive, a dog she dearly loves, and aides and nurses and doctors she schedules responsibly.  She is lucky in so many ways, and has stayed out of long term care facilities for most of her life.

The last time I posted about her shunt problems was the time I went to Charlotte, NC to be with her at the Carolinas Medical Center.  You can read more posts about her at these links:

• 2008
• 2008
• 2008
• 2011
• 2011

Like my SIL Charlotte says, "you don't know what you don't know".  And we don't know why or how the time comes for a revision, but it will likely be sooner than later.  But it is a concern, of course. Your prayers and concern are appreciated.

Regularly scheduled arts and crafts will resume shortly.