The weekend

I had a pretty good evening yesterday and woke up and felt pretty good this morning. I went to Tanner & Kylie's cello/violin recital with earplugs and dropped right after. After a long nap I tried for the first time to play a game with the three oldest kids tonight and they had to help me through it, and it is a kids game. But I guess a week ago I wouldn't have been able to do that. Overall, mentally I think I am coming along in the morning but start to fade after that. I would imagine that will continue improving.

I have been searching for doctors that have a focus on pseudotumor cerebri (intercranial hypertension, etc). There is a slight possibility of one in Sioux City but I am guessing he doesn't have much experience in it. His nurse is supposed to call me Monday. I have continued my internet searching each morning and last night was a little discouraged--didn't find any in Sioux Falls, Omaha, or Des Moines. Kyle told me to try Minneapolis so I looked last night and found a large neurology clinic with about 40 neurologists. There was one that listed this disease as a particular interest along with migraine, which is probably a good combination since I was treated for that for a long time. I will call them Monday to see what I can find and do a little more searching to see if there is any info about him positive or negative. If anyone that reads this sees something on Dr Jonathan Calkwood of Minneapolis clinic of Neurology please let me know!

My neurosurgeon said a week ago that 25% of his chiari patients have also been diagnosed with Intercranial Hypertension (IH). I am signing up for an IH registry and one of the questions was if I have Arnolds Chiari Malformation. Interesting! I don't remember if I wrote this before but my opening pressure with the spinal tap was 41. I have found that normal is under 20. Mine was done improperly so the 41 may not be accurate but I have wondered if that could scew the result to double the normal? Who knows, but I hope to get some answers.

By the way, did you see I added a picture? I haven't ever liked pictures of myself but especially since the headaches started. So I found this picture from shortly before it started. Maybe someday I will be able to smile again without a hint of pain. That would be awesome! :)