Sunday

My head continues to not be so good.  As I have said before, it could be much worse but after being headache free this summer it is very difficult now to go back into the headache mode.

I spoke with the nurse practioner of my neurosurgeon at Johns Hopkins.  The NS is out of the country for a few weeks.  The NP felt that it would be a "knee-jerk reaction" to just go and adjust the shunt down so that my pressure would go down.  Since I had done well this summer at the particular setting I was at and now since surgery my headache has returned she is wondering if the surgery somehow caused the shunt to no longer drain as well, particularly in the drainage tube in my abdomen.  So she felt that a shunt patency test, which I have only had done once and only at JH may give us more answers.  This test requires that they inject radioactive isotopes into the tubing right about the shunt pump and then follow it through something like an x-ray to see how it drains and how long it takes.  (This is my description but may not be exactly accurate!)  We would then see if the shunt is draining properly.  If that comes back looking okay, then she suggested that we reschedule the inpatient cerebral spinal fluid monitoring test that they had planned for last spring when I was there and then cancelled.  They would monitor the pressure in my head for 5 days to see what my pressure is on an ongoing basis and see what affects the pressure.

I still haven't heard from the neurosurgeons that I contacted about taking my case, but one told me they would have an answer by Tuesday.  There is one exception and that is in S. City.  I was declined about 7 months ago by a particular group after they reviewed my records.  I called them this week at a friends urging (thank you gg!) and they agreed to make an appointment without even seeing my records.  I am a little reserved about this but I sent my medical records as they requested and will see if they change their minds after their review.  The only thing that has changed is that now instead of being under the care of the ns in SF that caused me so many problems, I am under the care of Johns Hopkins. 

My hope is that one of the ns will accept me and work with JH.  JH seems think that the shunt patency test is something that is fairly straight forward and should be able to be done nearly anywhere.  I am a little more skeptical since I have never had this test until going to JH but we shall see.  Of course, if the outcome is a problem with the drainage of the shunt, I will be looking at another surgery.  If the in hospital test is ordered, I will be back on my way to Baltimore and I can't even see my way through that right now.  So the outlook isn't all that encouraging right now.  Again, one day at a time.  The Lord has a plan that is right for me.