Migraine Surgery, part 2: Back to parenting

Well, I just went back and read the "Migraine Surgery, Part 1" post. It was a good reminder of how far we've come. Right now, Harriet is tired -- the nerve pain on her scalp keeps her from sleeping -- and sick from pain meds making her nauseous. Throwing up when you have four incisions on your head and a healing nose = NOT FUN. It has been discouraging.

But we have to remember that her pain is better than it was, and one day soon we will see the fruit of all of this!

I've learned that it is really, really helpful to communicate with other patients and other Pain Parents who have gone through similar surgeries. Sometimes, they can tell you what to expect better than any nurse or surgeon! I have found the online community at MD Junction (www.mdjunction.com) to be really supportive and informative. They have forums for many, many, MANY health issues and are a good place to go if you need info or just need to understand that you and your family are not alone.

Now that we are a bit more than one month post-op, I'm back to the usual conundrum:

How do you parent a child in constant pain?

I can tell you what NOT to do, because... well... I've done it. And it sucks. And that is, don't hold in the small corrections and disciplines you know your child needs. These will build up inside until you find yourself blowing your stack at a kid who yes, did something wrong, but does NOT need a parent who is losing it. (cue the Pain Parent self-loathing)

Of course it works better to calmly address things as they come up, but that is easier said than done. What seems to make the difference for us: conversations that offer Harriet solutions for what to do when her pain is particularly bad and she finds herself wanting to lash out at the people who love her. Waiting until the trouble starts is really too late to address this. We have to lay out in advance what is expected, and what she can do when she feels like she can't meet those expectations.

Harriet is 16 and taller than I, so it is easy to forget that she is still, in fact, a child. A child who is coping with health issues that would flatten many adults. She needs guidance and she needs coping skills. Most of all, she needs to know that we love her NO MATTER WHAT. And that this love means we want her to grow into a strong, capable adult who knows how to behave in civilized company.

Last night, Harriet said, "Mom, I just want you to know that I appreciate how you are going through this with me, and helping me. Thank you."

Wow.

Helping our children is a privilege. Sometimes, many times, it feels like a burden. But who better to help our children than us?

Hang in there, Pain Parents.

Migraine surgery, part 1

January 17th was The Day: migraine surgery for Harriet. Here is the list of all the procedures they did to my baby (well, she's 16 but will always be my baby!):

1. Bilateral endoscopic release of the zygomaticotemporal branch of the trigeminal nerve
2. Septoplasty
3. Turbinectomy
4. Bilateral decompression of the greater occipital nerve, partial resection of the semispinalis capitis muscle and bilateral subcutaneous flap to shield the nerve
5. Third occipital neurectomy

The surgery took almost four hours. When surgery was over, but before we got to see Harriet, the surgeon came out to talk with us. Everything went just as planned, and he also found a blood vessel on her right greater occipital nerve - one big source of her pain - so he removed the blood vessel as well.

Harriet went into surgery with her usual pain level of 9 on a scale of 1-10. She woke up from surgery with her pain level at a 5. When she said that, I gasped and started to cry, and then the nurses (who were FANTASTIC and took great care of all of us) started to cry too. Of course, as the nerves woke up over the next few days and we dealt with all kinds of post-op yuckiness like drainage tubes (ew!) and nasal tubes (ow!), her pain got worse... But the primary pain is related to her surgery and not her migraine.

That's right! She still has migraine pain but it is definitely BETTER. Better after a year and a half of constant, debilitating pain. Better after an army of neurologists told us there is no cure, she needs to deal with the pain because it will never end, she's just stressed, she wants attention, or (my personal favorite) there's nothing left to help her but psychiatry.

It is so exciting to even contemplate that Harriet might get back to a normal life.

The surgeon tells us it will take 3 to 6 months to know for certain just how much relief she gets, but the initial results are VERY encouraging. Her biggest complaint now is that her scalp hurts and is super-sensitive. This is a common side effect of the greater occipital nerves finally being decompressed - they get "angry" and cause more pain for a while. It hurts to let anything touch her head, which means she is only sleeping a few hours here and there, so she's exhausted. But this pain will pass, leaving Harriet with either a greatly reduced migraine or (prayerfully, hopefully) no migraine at all.

This has been a hard couple of weeks, but Harriet, her dad, her sister and I can tell that we have done the right thing. Now, we sit back and wait for the healing. I'll blog a little later about some of the post-op specifics and some of the things along the way that have surprised us about this experience.

Please, Lord, let this be it!