Sunday

I am rejoicing that I was able to go to church both times today.  It isn't so easy but I try to walk in right before it starts and walk out quickly afterwards, which I really don't like doing! I would much rather visit!   Earplugs make it tolerable but my head hurts more by the time I get home.  Definitely worth it, though.

(By the way I am using abbreviations for places for our privacy so I may delete or edit comments that list names of local places)

I haven't gotten many answers.  Johns Hopkins did call me Wednesday and said that they would like me to come out there for the shunt patency test.  I figured out (not through the ns) that SC does do shunt patency tests so I am pleading with the ns to order the test here for me, but it is not very likely.  It seems like with neurosurgeons, if it isn't their idea, it isn't a good idea, but perhaps I am becoming a little cynical.  So if the SC neurosurgeon doesn't order the test, I told JH to schedule it on a first available basis.  I really don't know what to expect after that.  I haven't heard back from JH since the conversation Wednesday and I haven't heard from SC since then, either.

My head is doing a little better than it was the beginning of the week, but I still have that slowed processing that makes it difficult to function and definitely a painful head. The fogginess is maybe the most frustrating thing, but yet the pain isn't all that great either.  I so long for normalcy!  In all honesty, normal life is not overrated by me!  A lot of things are coming up with the kids that I would like to attend but it will be a challenge in the state I am in right now.  I am happy that I made it to the most important things already, though, and will just take the rest a day at a time.

Thanksgiving went okay for me.  Thursday was the turning point after the spinal tap, which was sooner than it had been the few previous times. I was able to go to Renae's house for the Thanksgiving meal at noon.  I then went home and layed down for the afternoon and went back a bit before supper and enjoyed the meal with them and some visiting.  I was pretty miserable by that night, but I was thankful to be able to participate as much as I did.  If it had been one day earlier, I wouldn't have been there at all.  My back is still pretty sore from the spinal tap but that is the least of my concerns at this point.  I am still pretty determined that I not have another spinal tap unless I am desperate.  My non-medical opinion is that it is gradually damaging the nerves in that area because the tap is done in the same spot each time.

I do wonder sometimes if there is more going on than the pseudotumor cerebri.  Is it still the effects of the Chiari that are causing the headaches or is there another issue?  I pray that we can find more answers.