Our Decision Making Process for MVD for 12 year old daughter

Someone referenced our boldness in deciding to go for MVD for our 12 year old daughter, even though her two thin slice MRIs showed no compression. This is what I wrote out, explaining our decision making factors, and I thought I would share it in a blog post.

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.

Informative article you posted thanks sweetie

And I believe you made the RIGHT decision no matter if he had found something in there or NOT. You had to try and give her a normal life! Much love to you all.

First and foremost how is your baby girl doin and what a courageous move on your part Mom. I also have TN and believe my son does also, dont want to see him go thru the decades of pain that I have, we were just talking about this tonite. I cry everytime I see him in pain. you see my grandmother also had this, they did nit have MVD back then. Hugs to your baby girl and good for you Mom cause you just knew what to do period. God Bless!

I am so happy for you all. :)