waking up in the hospital with her favorite stuffed wolf from when she was younger.
thanks so much for posting this and best wishes for continued recovery. I was much impressed to hear that nothing showed on the thin slice MRI and yet you had the courage to go on with the surgery.
You are quite welcome. I wanted to share our journey with anyone it would help.
As far as deciding to do the surgery, we did take a few days to decide when Dr. Carson came back and said he would do it. Especially when the other Docs were so agreed on 'there's nothing we can do'. But several stories I read/heard from people, especially about kids, had similar circumstances. I'm not sure *why* things aren't showing up in the MRIs, but it's not at all uncommon. In fact, in my research I found one leading MVD performing doc doesn't use MRIs as his deciding factor at all, but symptoms.
When Carson was willing to do the surgery, we came back to him twice with clarifying questions about what exactly he saw that no one else did. His answer was basically that he didn't see a compression, which is what everyone was looking for, but given her symptoms and the fact that there was a vein right along the nerve in the MRI, he really thought there was something structural going on for her. Again, he made no promises and said he could wind up going in and finding nothing, but he thought it was likely he would find something and was willing to do it.
Our Neurologist really tried to talk us out of it, "Why put her through that when the medication is working so well for her?" But my argument back to him was:
1. Yes, she may go into remission (his goal), but remission always ends, right?
2. Remissions get shorter with time, right?
3. The medication is working well right now, but the overwhelming likelihood is that they will become less and less effective with time, and eventually she would wind up with pain that isn't managed well with meds, especially given how young she's starting this road. Right? Right.
4. The medication is working well for the pain, but it *hugely stinks* academically. When we are talking about a girl who has had 3 hours of private tutoring per week for that past 3 years because of dyslexia, I HATE this medication for making it harder for her. And as the meds increase, the academic struggle increases, and how much is that going to limit her life?
5. All of these things could happen in the future, leading her to MVD anyway, which is a more successful surgery the more 'pristine' the nerve... meaning it would have a better shot at success now, than after years of other intervention. And what if that time comes when she's a Freshman in college? Or graduating from college? Or getting married? Or having her first child? Or when she has toddlers?
6. Right now we have one of the top Pediatric Neurosurgeons in the country, who only works on adults for TN, willing to do the surgery. And right now, we can carry her through it. As far as messing with life, anything the surgery sets her back in right now, we can make up. AND... kids bounce back from these things soooo much better than adults in general.
So anyway. I'm not saying at ALL that it was an easy decision. I laid awake in bed at night often in the weeks leading up to surgery. But I didn't see anything else that gave her a shot at a forever fix. I wanted her to have the best chance possible at being able to say "I HAD Trigeminal Neuralgia" instead of forever HAVING it. We'll see how our gamble goes, but so far it looks promising.
Thanks again for your detailed posts. This whole thing (TN) is so stressful that a detailed post like yours is very helpful. You have to make a lot of decisions based on your "best guess". I am so glad that things have worked out for your daughter.
You are quite welcome. I didn't mean to write such a book when I started! :-)