(I'm trying to write in a Halloween theme, so some terminology may be a bit creepy. But beyond the fun it's really deadly serious. Molly asked me to put the graphic up to show how things are going.)
It's a scary Halloween for the McCoy family. It started with a phone call at the stroke of midnight. It was Dr. Frim. Yes, we were expecting his late call. But midnight is very late...scary late.
Dr. Frim was following up his nurse's phone call earlier. The MRI's of Molly's skull and brains look good. He can't find anything wrong. That sounds like all treats, but it's really a trick. Seeing nothing wrong when Molly has such evil symptoms means she is running out of options. All Dr. Frim can do create a bloody mess by slicing open the back of her neck and fixing anatomical features to aid spinal fluid flow. After that, it's a dead end.
Here's the plan.
1. Molly will have a spinal tap to see if her body's response to surgery has increased her spinal fluid pressure. That could be the cause a lot of her problems. I think won't reveal anything wrong, but it's still possible and is worth trying.
2. If #1 doesn't work, Molly will get a second opinion from a pediatric neurosurgeon at the University of Wisconsin in Madison (same place where she got the MRI). Dr. Frim respects the doc there and thinks he's a good, nearby option for trying to figure out what's wrong and what to do. Problem is, Frim is the guy people go to when other options aren't as good. When you start at the top there are few places to go...BUT DOWN.....MUHAHAHAAAAaaaa!
3. If #2 reveals something, we do what's necessary. If it doesn't reveal anything, the last gasp will be to have Dr. Frim hack open the back of Molly's neck again and root around looking for anything that is not noticeable on the MRI but still a problem. It's a re-exploration of the chiari hoping to find something. He said about 1/2 of the time he finds something that fixes some or all of the problem, which means there's a 50% chance all that will happen is I do laundry for a lot longer. That gives me the chills.
If the surgery reveals nothing and her symptoms don't get better, Dr. Frim basically said that we are out of options. That's a frightening, but very real, possibility. We would then start looking at other things that may help symptoms, though those will probably not help all that much.
After the phone call Molly asked me if things might get bad enough where she would have to be in a wheelchair the rest of her life. All I could do is tell her that I don't know. This is as down as I've been in the 1 1/2 years we've been dealing with this stuff. We are setting up spinal tap and second opinion appointments asap. I'll keep you up to date.
Please pray for coming appointments and possible solutions. Pray that we would be content with whatever God does. Pray for opportunities to minister to others through all this.