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!

Is this it?

Well, I haven't wanted to jinx it, but it is finally here...

Harriet is having migraine surgery tomorrow. They are decompressing the greater occipital nerves at the back of her head; removing a tiny nerve branch near each temple; correcting her deviated septum; correcting a "paradoxical turbinate," or as I call it, a weird-shaped thingie in her nose; and, while she's on the table anyway, removing two moles from her back.

The surgeon is quite confident that this will give Harriet significant migraine relief. As in, this could stop the perma-migraine she has had for 18 months straight. She could go back to being a regular teenager who just gets migraines once in a while. She could get her life back!

I'm afraid to hope, but also afraid NOT to hope.

Recovery will be painful, not to mention gross. She'll have tubes in her nose for a few days, as well as drains COMING OUT OF HER HEAD (ew) that I have to change every four hours for the next 3 to 5 days. I picked up all of the post-op meds today, and will spend an exciting evening getting all of this stuff organized so I can manage my kid's pain without OD'ing her.

Some people wake up from this surgery and can already tell that the migraine is gone. Others take a few months as the nerves have to settle down after being compressed and in pain for so long. And some find out that the migraine stopped at the surgery sites but, surprise, they also need the forehead nerves done too (which we would have to do 6 months or more from now).

We are just praying, and hoping.

Maybe, just maybe... Maybe this is it!

Please don't...

When a child is in chronic pain, please don't...

...Say things like, "I just don't know how you can make it through the day." This is so discouraging!

...Pepper her with questions about what she has tried. Ask her dad or mom later, when the child is not around to be stressed by a conversation about all of the tries - and failures - she has experienced so far.

...Lecture him about good nutrition. For one thing, it sounds like you think it is somehow his fault, his "bad" choices, causing his pain. For another, people with a chronic illness -- and their parents! -- are hyper-aware of everything they put into their bodies. They probably know more about nutrition related to their health issues than you do.

...Ask the Pain Parent, "Have you taken her to a doctor?" (Yes, people really do ask this. And it defies explanation.)

...Question whether it is "really that bad." It IS really that bad, and she will NEVER FORGET that you questioned her pain.

When a child is in pain, please do...

...Watch what you say to the Pain Parent when the child can hear you. Words hurt.

...When you have a suggestion, an idea, or a news article that may help, ASK FIRST: "I know you're really on top of this, but may I share something that made me think of you and your child?" We get so much unsolicited advice, often in the form of lecturing, that it is lovely to have someone ask us before launching into something. (We know you're trying to help, but sometimes we are overwhelmed!)

...Ask, "How are you feeling today?" This makes the question very specific and helps the child, and the parent, look at the pain in the context of just today, instead of the monstrous experience as a whole.

...Offer a hug, a shoulder, a minute of your time. Children in pain, and their parents, feel so isolated. We need to know you remember that we are hurting.

My own child in pain, Harriet, would add one thing to this list: Stop asking me if I drink enough water! She gets this question all the time. When she answers that she DOES drink enough water, they start quizzing her on how much H2O she drinks in a day, as if to prove her wrong. Some determined folks continue with a tirade on the importance of proper hydration even after we've established that the kid is, indeed, hydrated. Go figure.

Kids helping kids

Our young friend, N, is in the hospital and in terrible pain. This little girl is 10 years old and has some awful health issues, including nonstop head and abdominal pain that the doctors can't seem to address. Harriet has insisted on going to see N every day since she went into the hospital last week, even though Harriet herself is still dealing with her own pain.

Today, I watched Harriet walk into the hospital room where N was sobbing in pain, saying that she had no hope. Harriet -- who, let's remember, is only 15 years old -- sat right down on the edge of the bed and started whispering to N. In a few minutes, the tears had stopped and the two girls were talking about some pretty deep stuff: hope, God, pain... It was unbelievable. N's mom and I ended up going out into the hallway to give the girls some time to talk.

Pain has made these children old and wise beyond their years. It breaks my heart to see them suffer, but it heals my soul to see them help each other.

When no one understands the pain of your child, the feelings slide from terror to hopelessness to rage from one moment to the next. Today, these two girls showed a room full of grownups how important it is to help each other through our darkest moments. To fearlessly jump in and grab the hand of someone else who is hurting, even when we are hurting too.

Maybe especially when we are hurting.

"And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart." --Ecclesiastes 4:12

Sweet 16

Harriet turned 16 yesterday. She was in too much pain to have a party, but she didn't complain. We went out for a quiet, family dinner, and that was it in terms of celebration.

On Harriet's 16th birthday, here are the numbers ruling her life:

30+: Meds she has tried

24/7: When she hurts

21: Total days in the hospital

18: Months of constant pain

15: Injections into her head

12: Pills she takes each day

8-10: Her pain level

8: Neurologists she has seen so far

3: Physical therapists

3: Nerve blocks

3: Counselors/pain psychologists

And the one that is making us all nuts right now (drum roll, please):

14: Days waiting for Dr. Fancypants to schedule Harriet's surgery

Someone's in the hospital - now what?

Someone you know has a child in the hospital. You want to go visit, and boy-oh-boy do you want to help. Here are my recommendations for taking something on your visit that the child and his or her parents will appreciate and use. (I also think this approach works quite well for grown-up friends in the hospital!)

First, let them know you're coming. A surprise hospital visit is No Fun.

Second, ask what you can bring. But you have to ask the right way. Don't say, "Can I bring you anything?" They'll say no. Your average Pain Parent has a white-knuckled grip on everything as he or she tries to stay on top of the situation, and won't want to ask for help. So, you have to be specific and make it easy for them to accept small favors. For example:

"I'm going to bring you some munchies - is there anything in particular you and the kiddo want me to include?"

"I'm stopping at Starbuck's on the way to the hospital - what would you like, or should I just pick something for you?"

Third, pack a little bag of oh-no-someone-is-in-the-hospital goodies. It's not much, and it doesn't have to be expensive - these are simple things they'll be glad to have on hand. And you don't need a fancy bag, just whatever you have handy; I used an old Coldwater Creek bag last Saturday.

Here are a few ideas for things that you can put in the bag to take to your friend and their child:

1. Notebook and pen (to keep track of questions for the doctor, and to take notes on what the doctor says).

2. Saltine crackers, granola bars, apples, or other healthy and "easy" munchies. Make sure what you pack doesn't require utensils, won't make a mess, and doesn't have a strong smell that can upset someone who already feels awful. Remember, no need to get fancy -- I just raid my pantry.

3. Bottles of water and maybe a couple of cans of Sprite, ginger ale, or something you know they like. I know that my Pain Parent pal CP will be ready to murder someone for a Diet Coke by noon, so that's part of what I take for her.

4. A quiet activity that the child can do in bed. This can be something as simple as a sketch pad and colored pencils, an age-appropriate book, or a kit to weave friendship bracelets. Think twice before you send markers - again, anything with a strong smell can create more trouble for the patient.

5. Lend a few of your own DVDs so they have something to watch on the hospital's DVD player.

6. Today's newspaper and/or a magazine.

It's natural to want to DO something when a friend is sick. That's what I like about my oh-no-someone-is-in-the-hospital bags. You'll feel better taking something to help your friends, and they'll appreciate the thoughtfulness.

Hugs can hurt

This week, I had the chance to visit with a Pain Parent friend whose 17-year-old daughter has chronic head, neck and back pain. She's understandably a very tough kid -- this pain has had her in its clutches for more than three years now.

As we chatted, this girl told me about an upcoming medical procedure-slash-test she has coming up. She told me that the doctor said if this doesn't find the problem, then there is nothing else that can be done for her.

That is WRONG. If the doctor doesn't know what else can be done, then the doctor should say, "I don't know what else to do for you," and help the patient figure out the next doctor to try. To tell anyone (especially a child) that there is no hope -- when there certainly could be hope, it's just with someone else -- is cruel. Pain is not life-threatening, and I think that's why so many docs see no reason to try anything new or different or admit that someone else might be better able to help. It's just pain, right?

But, back to our friend. I asked if I could do anything for her, and she said, "I could really use a hug, but..." and she winced. How sad is it to crave human touch but to know it will cause even more pain?

So I gave an aching child the lightest of touches, a very gentle hug that I tried to fill with all of the warmth and love I have.