Well, apparently I'm overdue for an update, and I expected to be able to post one days ago. The problem is, the spinal tap sucked and the aftermath has sucked in a different way.
For the past few days, except for a few hours mid-day, and especially first thing in the morning, when I try to stand or sit upright I get this wincing, unbearable, electrocuting pain coursing through my skull that feels like I accidentally jammed my entire upper body through a force field in the 'Hunger Games' arena. Then the cold burning nausea sets in, and today: the double vision.
I expected to have headaches, and perhaps some nausea for a day or two after the procedure because my brain is missing some of its cushion since they removed four tubes of cerebrospinal fluid (CSF) through the tap they built into my back at the hospital.
Thank God for Juan, who was my BFF through the whole procedure. He was the radiology tech who walked me through the whole process, warned me about how the doctor coming to shove needles into my back has "not much of a sense of humor" [read: zero personality or bedside manner], but is an excellent radiologist. Juan gave me his word, so I believed it.
Turns out he was right because, despite the forewarnings that if the first hole wasn't the right one they'd try one or two more, and that the 4-inch needle that would be inserted into my spinal cord may graze a nerve, causing numbness or an electrocution feeling down one or both legs, neither of those things happened.
Juan had warned me that the anesthesia needle would pinch and the medicine going in would cause tightness [side note: Juan is an under-exaggerator]. He told me no matter what happens though, to stay very still, because if I moved at all they'd have to start over.
As they marked the three best needle-entry spots between my lower vertebrae, I started to panic.
I was laid face down on a steel surgical table, with my feet jammed against a metal plate at the bottom, and folded linens shoved under my abdomen to remove the curve in my lower back and open up the vertebrae. The only thing comfortable about the setup was that Juan had placed warm blankets over my shoulders and my legs, kinda like how my dad used to bring us socks straight from the dryer before school.
As the doctor prepared the anesthesia shot, I had to remind myself it would be over soon — despite not having officially started yet — and silenced the voice in my head that was advising the voice in my mouth to terminate the proceedings immediately.
When the first needle went in, it hurt. When the anesthesia was pushed through the needle, it hurt worse. And over a much broader area. I was under the impression the anesthesia was supposed to make the next needle not hurt... If so, it failed miserably.
I felt the spinal tap needle go in, and I think I whimpered involuntarily. I know I winced. It took all the control I could summon to keep my lower body still against the table. But Juan's words were ringing in my ears, and I didn't want to start over.
Seconds later, I felt the needle again. Deep inside my back. Puncturing my spinal cord.
The only way I can describe the sensation is to compare it to what I imagine it must feel and sound like — yes, sound like — to pierce one of those jelly-filled, rubbery-skinned, stress squeezy tubes...with a dull tack.
I don't know if it was the hideous sensation of feeling and hearing (or feeling like I heard) the puncture, or if it was the fact that the CSF started leaving my spinal cord at that moment (as it was supposed to), but I immediately became nauseous. And cold. And hot. And clammy. And more nauseous. It was all I could do to heed Juan's words and not move. The last thing I wanted in life at that moment was to start this thing over.
Then they tilted the bed. Juan had warned me if the fluid didn't come fast enough on its own, they'd have to tilt me upright to let gravity play a part. Now I was effectively standing on my tiptoes on a steel plate, feebly holding up my own weight, while pushed face first against this surgical table. Extra work to do at that point was not what I needed.
I know my breaths must have quickened, because the doctor instructed me to breathe slowly, through my mouth. As much as I wanted to do just that, I was experiencing a surprising degree of difficulty implementing the instruction.
At this point, I was moving a little. I had to. I had to push the pillow up from under my head. But it was still touching my arms, and it felt like a thousand-pound pile of hot blankets. I was careful to move only my arms, and just my chin, ever-so-slightly. I wanted to kick my legs and flail my arms and release the position I was holding, and allow myself to puke over the side of the table. But none of those things were going to be an option.
The slow, deliberate — as slow and deliberate as I could make them anyway — breaths coming out of my mouth started to feel like the icy blue-white breath pretty couples have in gum commercials against my clammy hot arm. I started trying to breathe yoga breaths, Bar Method breaths, concentrated exhales. I was praying through the feeling that I was going to faint, and when I couldn't concentrate on that any longer, I just prayed that God would make my mom pray for me.
I asked Juan to take the blankets off me. He did and I still felt like I was suffocating. I asked him to remove the pillow from the table (how could it be suffocating me, it was barely touching me??). He sweetly asked me if he could do anything else for me. The doctor snapped at him for the third or fourth time about "keeping it centered."
I started to feel like I was officially losing consciousness, while telling myself as calmly as I could that if I threw up or passed out we'd have to start over, when the doctor summoned some sympathy from deep inside his dark, cavernous soul to tell me he was almost finished.
"I'm starting the last tube. You're doing good." It sounded really forced on his part, but knowing I was 3/4 of the way through made it to where I could hang on, and I was grateful. "Thank you," came so softly out of my mouth, I'm not even sure it was audible.
I eventually felt them pull the needle back out and it was over. All of a sudden I wasn't cold and hot and nauseous anymore, and I knew for sure for the first time in at least 10 minutes that I wasn't going to pass out. When they rolled me over onto a gurney, I couldn't figure out why I was shivering, then I realized the front of my hospital gown was soaked with sweat...fancy.
They wheeled me carefully to a hospital room and sent in a nurse to take some blood, which at first felt like adding insult to injury. Like, really, they couldn't have done this beforehand? But that needle prick felt like rolling naked through a field of cupcakes in comparison to what I'd just been through.
They made me lie flat on the gurney for an hour to let a blood clot form so the CSF wouldn't leak, then I went home and have been pretty much unsuccessful at getting out of bed since.
I've been getting lots of calls, and texts, and Facebook messages, and emails from concerned friends, which has made the four days in bed a little easier. (And to be honest, a little more exhausting at times.) I'm not used to sitting still for so long, or to being in bed so much. I read books 2 & 3 of the 'Hunger Games' series in 24 hours. I've watched countless newscasts and emailed my bosses to tell them about mistakes I noticed. I've gotten food deliveries, and lots of cuddles from my concerned canines. And I've slept. A lot.
But now I'm getting too antsy to stay down. It's driving me crazy not to exercise. And I'm missing out on practices with my marathon team. I'm hydrating and caffeinating and medicating, and doing everything they told me to, waiting for the CSF to replenish itself. Yesterday I thought today would be the day I'd get up, but this morning was the worst I've felt yet.
The headaches come and go in waves, and though I'm somewhat encouraged by the fact I've been able to form complex thoughts and type them into this blog post without taking a break, I'm also discouraged knowing how good I felt yesterday afternoon, only to be torpedoed by this morning's episode wherein I almost had to call an ambulance on myself.
If I'm not better tomorrow, they may send me back to the hospital. Where they may have to re-puncture me to insert a bloodclot patch to stem any CSF leakage. The possibility of that is my current worst nightmare.
So if you read this, and you pray, please pray I'm better by tomorrow. "I don't want them to poke my back again," has been my answer any time someone has told me I need to talk to my doctor. But tomorrow, I'll have no choice.
Thanks for all the love and support. It's been somewhat overwhelming — though mostly in a good way -- to this guarded, introverted privacy freak.
Love,
-Molly
For the past few days, except for a few hours mid-day, and especially first thing in the morning, when I try to stand or sit upright I get this wincing, unbearable, electrocuting pain coursing through my skull that feels like I accidentally jammed my entire upper body through a force field in the 'Hunger Games' arena. Then the cold burning nausea sets in, and today: the double vision.
I expected to have headaches, and perhaps some nausea for a day or two after the procedure because my brain is missing some of its cushion since they removed four tubes of cerebrospinal fluid (CSF) through the tap they built into my back at the hospital.
Thank God for Juan, who was my BFF through the whole procedure. He was the radiology tech who walked me through the whole process, warned me about how the doctor coming to shove needles into my back has "not much of a sense of humor" [read: zero personality or bedside manner], but is an excellent radiologist. Juan gave me his word, so I believed it.
Turns out he was right because, despite the forewarnings that if the first hole wasn't the right one they'd try one or two more, and that the 4-inch needle that would be inserted into my spinal cord may graze a nerve, causing numbness or an electrocution feeling down one or both legs, neither of those things happened.
Juan had warned me that the anesthesia needle would pinch and the medicine going in would cause tightness [side note: Juan is an under-exaggerator]. He told me no matter what happens though, to stay very still, because if I moved at all they'd have to start over.
As they marked the three best needle-entry spots between my lower vertebrae, I started to panic.
I was laid face down on a steel surgical table, with my feet jammed against a metal plate at the bottom, and folded linens shoved under my abdomen to remove the curve in my lower back and open up the vertebrae. The only thing comfortable about the setup was that Juan had placed warm blankets over my shoulders and my legs, kinda like how my dad used to bring us socks straight from the dryer before school.
As the doctor prepared the anesthesia shot, I had to remind myself it would be over soon — despite not having officially started yet — and silenced the voice in my head that was advising the voice in my mouth to terminate the proceedings immediately.
When the first needle went in, it hurt. When the anesthesia was pushed through the needle, it hurt worse. And over a much broader area. I was under the impression the anesthesia was supposed to make the next needle not hurt... If so, it failed miserably.
I felt the spinal tap needle go in, and I think I whimpered involuntarily. I know I winced. It took all the control I could summon to keep my lower body still against the table. But Juan's words were ringing in my ears, and I didn't want to start over.
Seconds later, I felt the needle again. Deep inside my back. Puncturing my spinal cord.
The only way I can describe the sensation is to compare it to what I imagine it must feel and sound like — yes, sound like — to pierce one of those jelly-filled, rubbery-skinned, stress squeezy tubes...with a dull tack.
I don't know if it was the hideous sensation of feeling and hearing (or feeling like I heard) the puncture, or if it was the fact that the CSF started leaving my spinal cord at that moment (as it was supposed to), but I immediately became nauseous. And cold. And hot. And clammy. And more nauseous. It was all I could do to heed Juan's words and not move. The last thing I wanted in life at that moment was to start this thing over.
Then they tilted the bed. Juan had warned me if the fluid didn't come fast enough on its own, they'd have to tilt me upright to let gravity play a part. Now I was effectively standing on my tiptoes on a steel plate, feebly holding up my own weight, while pushed face first against this surgical table. Extra work to do at that point was not what I needed.
I know my breaths must have quickened, because the doctor instructed me to breathe slowly, through my mouth. As much as I wanted to do just that, I was experiencing a surprising degree of difficulty implementing the instruction.
At this point, I was moving a little. I had to. I had to push the pillow up from under my head. But it was still touching my arms, and it felt like a thousand-pound pile of hot blankets. I was careful to move only my arms, and just my chin, ever-so-slightly. I wanted to kick my legs and flail my arms and release the position I was holding, and allow myself to puke over the side of the table. But none of those things were going to be an option.
The slow, deliberate — as slow and deliberate as I could make them anyway — breaths coming out of my mouth started to feel like the icy blue-white breath pretty couples have in gum commercials against my clammy hot arm. I started trying to breathe yoga breaths, Bar Method breaths, concentrated exhales. I was praying through the feeling that I was going to faint, and when I couldn't concentrate on that any longer, I just prayed that God would make my mom pray for me.
I asked Juan to take the blankets off me. He did and I still felt like I was suffocating. I asked him to remove the pillow from the table (how could it be suffocating me, it was barely touching me??). He sweetly asked me if he could do anything else for me. The doctor snapped at him for the third or fourth time about "keeping it centered."
I started to feel like I was officially losing consciousness, while telling myself as calmly as I could that if I threw up or passed out we'd have to start over, when the doctor summoned some sympathy from deep inside his dark, cavernous soul to tell me he was almost finished.
"I'm starting the last tube. You're doing good." It sounded really forced on his part, but knowing I was 3/4 of the way through made it to where I could hang on, and I was grateful. "Thank you," came so softly out of my mouth, I'm not even sure it was audible.
I eventually felt them pull the needle back out and it was over. All of a sudden I wasn't cold and hot and nauseous anymore, and I knew for sure for the first time in at least 10 minutes that I wasn't going to pass out. When they rolled me over onto a gurney, I couldn't figure out why I was shivering, then I realized the front of my hospital gown was soaked with sweat...fancy.
They wheeled me carefully to a hospital room and sent in a nurse to take some blood, which at first felt like adding insult to injury. Like, really, they couldn't have done this beforehand? But that needle prick felt like rolling naked through a field of cupcakes in comparison to what I'd just been through.
They made me lie flat on the gurney for an hour to let a blood clot form so the CSF wouldn't leak, then I went home and have been pretty much unsuccessful at getting out of bed since.
I've been getting lots of calls, and texts, and Facebook messages, and emails from concerned friends, which has made the four days in bed a little easier. (And to be honest, a little more exhausting at times.) I'm not used to sitting still for so long, or to being in bed so much. I read books 2 & 3 of the 'Hunger Games' series in 24 hours. I've watched countless newscasts and emailed my bosses to tell them about mistakes I noticed. I've gotten food deliveries, and lots of cuddles from my concerned canines. And I've slept. A lot.
But now I'm getting too antsy to stay down. It's driving me crazy not to exercise. And I'm missing out on practices with my marathon team. I'm hydrating and caffeinating and medicating, and doing everything they told me to, waiting for the CSF to replenish itself. Yesterday I thought today would be the day I'd get up, but this morning was the worst I've felt yet.
The headaches come and go in waves, and though I'm somewhat encouraged by the fact I've been able to form complex thoughts and type them into this blog post without taking a break, I'm also discouraged knowing how good I felt yesterday afternoon, only to be torpedoed by this morning's episode wherein I almost had to call an ambulance on myself.
If I'm not better tomorrow, they may send me back to the hospital. Where they may have to re-puncture me to insert a bloodclot patch to stem any CSF leakage. The possibility of that is my current worst nightmare.
So if you read this, and you pray, please pray I'm better by tomorrow. "I don't want them to poke my back again," has been my answer any time someone has told me I need to talk to my doctor. But tomorrow, I'll have no choice.
Thanks for all the love and support. It's been somewhat overwhelming — though mostly in a good way -- to this guarded, introverted privacy freak.
Love,
-Molly