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In November 2017, John carried a heavy Christmas tree, the kind of activity he often did. For about 5 years, he had had regular head pain we've always called migraines: challenging ones that didn't respond to many treatments. Through those, he had worked as a stay at home dad; he drove, changed diapers, went to church, participated in family gatherings, hung out with friends, performed well in electrical engineering classes, and persisted through daily life.
Maybe he happened to lift something a certain way, but that November John developed new symptoms he'd never had before, overnight. I remember seeing him lying flat on a floor and asking why; he replied that the pain was worse upright but better lying down (nothing like a position change had ever helped his prior head pain). His head pain had moved: when upright, the intense pain was now at the back of the head/base of skull, with a sense of tugging at the neck. One morning he woke up with his pillow and ear wet; when he stood, he would weave and stumble his way to the bathroom like he was on a sinking pirate ship. All new.
While lying completely flat (no pillow), he began researching the new symptoms and learned about cerebrospinal fluid leaks, which could account for positional relief or worsening of pain and other symptoms.
He called his neurologist, who specialized in migraines and didn't recognize these hallmark symptoms. The neurologist sent John to an ER; he was admitted, but the neurologists in attendance ignored the account of new positional change and the shift of pain location. After working hard and performing well all semester, John was unable to complete a couple of exams.
It was several weeks before Christmas.
I took John to a sharp nurse practitioner. She had seen a csf leak case and witnessed the drastic change in his thinking and verbalization upright vs flat, recommending we go to an academic hospital ER, since they might recognize what was happening. They gave John a treatment of caffeine IV and sent him home to drink caffeine and lie flat for a week as conservative treatment for a csf leak; the caffeine IV helped for a couple days but the home caffeine and flat bedrest the week of Christmas didn’t.
In January 2018 his neurologist continued to dismiss the ongoing positional symptoms, so we tried to get in at Big Name Place where we were certain they were more familiar with unusual diagnoses. John had to withdraw from that semester's engineering classes; he had made Dean's List through chronic migraines, but this new pain, dizziness, and confusion, he couldn't think through.
Finally in February we got him an appt with a neurologist at Big Name Place. The specialist witnessed the change in John upright vs flat and ordered a CT myelogram of the spine to check for leaks, also ordering the staple treatment for a csf leak, a blind blood patch. We thought we were getting somewhere despite scheduling delay; months were passing with him flat in bed, and we had a baby coming. By the time the myelogram was performed weeks later, John's positional symptoms had muddied, something he knew could occur with long-term leaks; he no longer got relief lying flat and was awake until 3 or 4 am from the intensity of the pain: no pain medicine helped.
What the neuroradiologist didn't know, what we didn't know at the time, was that it's possible to have a leak and elevated csf pressure simultaneously; so when the myelogram was performed and his pressure was elevated, they didn't perform the blood patch.
At a follow-up in March, the specialist prescribed a diuretic to reduce high csf pressure. The effect was quick: over a weekend, the pain began to reduce, John could fall asleep at night, he could walk to the kitchen upright in a straight line without weaving and stumbling. His symptoms had appeared in November; finally in March the kids and I saw him upright, chatting normally. We were flummoxed. Had high pressure been the culprit all along? On the diuretic, by mid-April he had regained a lot of strength. He even had a week or two completely pain-free. But John could at least force himself to function through the old migraine pain, he was happy to be upright and out of bed after a very long winter.
At that point we didn't know what to make of the initial positional symptoms but were too relieved to have John functional again to think much about it and were distracted by the newborn.
Having taken medical withdrawal for the semester, John began working part-time that summer, then began full-time toward fall; he mentioned his brain still didn't feel like it was running full steam, so a class on electromagnetics didn't sound appealing yet anyway. He was working through migraines but was relieved just not to be debilitated and helpless in bed. He's always loved the baby stage with our kids and this baby was an especially miraculous addition to Team Turner, so he enjoyed getting to be upright, swaddling, taking late-night feedings, catching up on time with the older two.
Last November we moved: packing, lifting, hauling. If we had known more about csf leaks - but we didn't. He carried and moved a lot of heavy things. By early December 2018, his usual head pain worsened considerably despite having improved before the move.
We thought it was exacerbated migraine at first. It didn't seem postural, after all. It couldn't be a repeat of the prior winter, not now, not working a job he enjoyed after six months of stability. It steadily worsened through January. He began not to function well at work, where they were understanding. When he finally had his regular migraine treatment, it didn't help, like the winter before. We asked the specialist for a repeat lumbar puncture, thinking maybe the diuretic would fix everything again. The specialist was losing interest; he prescribed the diuretic though, and John began taking it. It didn't have the rapid effect of the spring before, though I could see a big difference in John's clarity; a nurse commented on his increased ability to organize his thoughts and communicate them quickly.
But he had to let go of his position; they'd been more than patient, but we knew we couldn't provide a definitive timeline of recovery.
His dizziness, stumbling, and confusion meant he couldn't handle stairs well - he'd had a couple close calls stumbling down the bottom few. I started bringing his meals upstairs. We tried having him lie flat for 20 minutes just to see if there was any positional element to his symptoms but didn't see a change; the severity of pain meant again he was awake til 3 or 4 in the morning.
I didn't know what to do; I wanted to discuss it all with Regular John, but Regular John who used to discuss the viability of Bitcoin now struggled to process whether he wanted A or B for supper. I researched a number of avenues. Exhausted and overwhelmed, I asked, "what do we know for sure?" I knew Clear John initially had zeroed in on csf leaks; I knew those original postural symptoms had never been explained or addressed. We were exhausted; John had been mostly bedridden again for months; the baby was now one.
A friend directed me to some helpful csf leak resources. After another friend offered help with research and logistics, she recommended we try a 48 hour flat test protocol suggested by Stanford for suspected leakers. She also began compiling records and imaging to send for a possible appointment with a csf leak-fluent specialist a state away.
The idea is that long-term or chronic leakers sometimes have to lie flat not for 15 minutes but for up to 48 hours before positional symptoms re-emerge. It was now July.
Within 24 hours flat of the 48 hour flat test protocol, Regular John began to re-emerge. The pain was reducing significantly, his personality was coming back, he was making jokes, able to tolerate having the kids up on the bed with him. He had to be flat, but Real Him was returning.
Those positional benefits stayed about a month; blissful. Then whether from picking up the now 22 pound toddler or something else, the pain began increasing; lying flat was still much better than upright but didn’t give as much relief.
John loathes the ER but one day in August the pain spiked along with facial numbness on one side and he asked to go. I took him to a teaching hospital. For the first time in months, we heard a physician say, "yes, it sounds like you have csf leak symptoms." They gave him a caffeine IV - he had several very improved days afterward - and referred him for followup to discuss a blind blood patch. As of early September, we now have a date, almost two years after the positional symptoms popped up, for a basic blind blood patch to be performed, a first-line treatment for a spinal csf leak.
Our friend sent the packet off to the specialist 8 hours away who "speaks" csf leak, so if the blood patch doesn't hold, a targeted one is necessary, if the leak is caused by a bit of disc poking the membrane - we have an iron in the fire.
What's been startling is to discover how typical this narrative is for people with a csf leak.
Some have gone a decade or more; many are treated for migraine even Alzheimer's before finally getting the answer: your brain goo is leaking! We need to plug it up! It was a bad day when I read of people whose diagnosis was so delayed they died from blood clots due to prolonged bedrest: John now owns a pair of sporty compression socks.
Recently our 6 year old informed me she was putting her pillow away so she could lie flat to sleep. I was startled, then asked - "so you can be like Daddy?" A defiant smile.
"Yes."
I let her.
This is a treatable condition; there shouldn't be need for someone to life flat indefinitely through a drawn-out diagnostic process.
