Remission isn’t just a term used in cancer. It is a term used in trigeminal neuralgia as well. And the good news is we are again in Kyle’s remission time period. Thankfully this remission period is the one thing that has become predictable in the last six years. Before we even knew it was TN we knew from about June to September his pain leaves.
For us this year that means he gets to cut down his meds for a few months. He has weaned down his dose to a very small dose. I have gotten the questions about him and how things are going and usually it is a good thing when you don’t hear from me concerning his TN. That usually means he is holding steady.
And yup that is where we are at. I feel like the last two years this seasonal remission has given us time to breath and prepare for the fall when usually it returns. I held out so much hope last year that due to the MVD that it wouldn’t return. We know my hopes were dashed. My hope is that this year I’m more prepared for that.
I know he has an appointment scheduled down in Indy toward the beginning of the fall to be sure we are not waiting months on meds and answers. Surgery is still a very real possibility. However, we are working hard this summer to try and make some changes that will hopefully help some with the winter. But that is the thing with TN you can’t predict much. You can guess what will make it better and what once worked sometimes doesn’t.
We put our faith again in God and in our love and hope that next winter is a bit better. I know this winter was harder because we had the blow that his MVD wasn’t entirely successful and that on top of it he got occipital neuralgia as a side effect and it was now bi-lateral (both sides). Thankfully, the meds tamed the new side and eased the surgical side.
More than anything we just want to find normal. The fluctuating meds and pain make it hard sometimes to find a normal. The hanging possibility of another surgery. But I try so hard to not get stuck there. It is so easy to stay there in that moment. So when we are in moments like we are now I try hard to not even think of TN. It is easy to get caught up in it all and I know he hates when I get stuck there.
There is my latest update. TN took a vacation. Praying so very hard it remains as unpredictable as it seems to be and it never comes back. Letting love win always.