Vladivostok! Exploring the Scenery

Pretzell PT—when he started getting a sore back from being a couch potato, we started taking walks, but also fun activities like baking soft pretzels to create a bit of activity.

May 15, 2017

Christopher officially no longer has Chiari headaches.  We went to his post-op with Dr. Groves today, and confirmed that he is experiencing residual neck muscle pain from surgery, not actual Chiari headaches.  Not even when he plays hard outside.  She admitted today that she had her doubts going in, but he’s completely convinced her.  I don’t think anybody really understood how good he’d gotten in subduing his own pain until they saw him sail through PICU.

So, we are nearly six weeks out from surgery and scheduled to see neurosurgery, neurology, pediatrics, and pain clinic this week.  Whew.  But how did we get to here?

Overall, the surgery looks like it’s been life-changing for Christopher.  The constant pressure, which he says was like a banging, is gone.  

Three weeks ago, at his regular outpatient PT, he was discharged from all PT services.  After running him through his paces, Hannah says he didn’t regress at all compared to when she saw him two weeks prior to surgery.  There remains a slight deficit when he hops on the left leg, or does left leg standing balance with eyes closed.  All other functions are equal bilaterally.  The neurosurgery PA says they generally don’t say a deficit is permanent until we reach 12 months from the original AVM resection.  So he may regain some of that by August.  But they agree, it’s such a specific deficit, there are very few places it will ever show up (like a yoga tree pose, eyes closed).  Dr. Groves, while thoroughly pleased with his neck function right now, says he’s currently at 60-70% tensile strength in those muscles.  At 6 months, he’ll be at 80-90%, they’ll never fully regain their strength due to scar tissue formation.  So, in a few months, if neck stiffness is causing significant discomfort, we may need to revisit the idea of PT, but for Chiari, not the AVM.

About a week after the discharge, Christopher started getting piercing headaches behind his eyeball.  It’s usually only one, but not always the same eye, and is sometimes behind both sockets.  We ended up calling the on-call neurosurgeon one evening when he had a level 8 headache that wasn’t responding to pain, as per his discharge instructions.  After listening to his symptoms, we were told that while eye headaches after a Chiari decompression aren’t common, they aren’t unheard of, and he only needed to be treated right away if he needed better pain control.  He opted to try sleeping in his own bed, and with the help of relaxation essential oils diffusing in his room, he slept without trouble.  A week later, though, we were still having trouble.  Stephanie, our favorite PA, spent over 30 minutes on the phone with me asking detailed questions, but ultimately decided he was having daily migraines.  This happened after the AVM surgery, and the migraines mostly disappeared after six weeks, so Stephanie felt like his threshold for migraines was similarly lowered by this procedure.  She almost put him on an oral steroid, but because he was only 2 weeks’ post-op, opted to have us give Motrin every 4 hours around the clock instead to keep the inflammation in check, and hopefully the migraines.  That worked beautifully.  But as we’ve weaned off the strong meds (Dilaudid, Valium), and gotten him down to only 3 med doses a day, he’s back to daily eyeball headaches.  They do usually respond to Tylenol plus our Migraine Essential Oil Blend (roll-on vial filled with 3% Plant Therapy Tension Relief diluted in almond oil, plus 3 drops Valerian oil), but they hit about 4-6pm every day.

Also about a week after surgery, he started having nosebleeds.  We tried treating with saline nose spray, but they’ve been getting more voluminous and more frequent.  Today’s was bad enough, I suddenly wondered if his headaches are sinusitis or allergic rhinitis, not migraines.  So we had the pediatrician take a look, since neuro types don’t generally do that sort of thing.  His nose is completely inflamed, but no signs of infection or allergy.  The pedi thinks that while the Non-Steroidal Anti-Inflammatory effect of the Motrin was great for the migraines and soft tissue pain, it has thinned his blood enough to exacerbate his nosebleeds (he’s always gotten them in the winter).  For now, we’re treating with Aquaphor, but the pediatrician wants us to ask the neurologist about an oral steroid to calm both his nose and the eyeball headaches.  He just didn’t want to mask any symptoms before Dr. Langdon, our lovely neurologist, sees him tomorrow morning.  This is the hard part.  On the one hand, he's Chiari-free.  On the other, the very meds we were told to administer to help migraines are triggering nasty nosebleeds.  I'm sure we'll get it sorted, but it does muddy the picture.

Normally, Dr. Groves would wait 6 months to do a post-op MRI, but since Dr. Tamargo wants to see him in August, she’s scheduling an appointment for the MRI and visits with herself and Tamargo then.  I told her we could wait until September, but she laughed and said, “Dr. Tamargo is more important than I am, we’ll do it in August.”  She’ll then continue to follow him yearly for awhile before she discharges him to 3-5 year appointments to see if anything else crops up.  The odds of him ever developing scoliosis are now greatly diminished, but she’ll continue checking.  The pediatrician says they plan on checking him every six months.  Luckily, that’s an easy check, no equipment necessary.

Otherwise, Christopher is free to swim for fun, to walk, play on the playground, whatever he feels energetic enough to do.  We began schoolwork again after two weeks and are back at a full schedule.  He isn’t having any trouble completing his schoolwork most days.  In fact, he is finishing the last few exercises of sixth grade math in Khan Academy, having finished his textbook last week.  But he is likely to still have low energy and some neck pain for 2-5 months.  This may be an easy brain surgery, but it still takes a good six months to fully recover.