Monday, July 24, 2017

SURGERY DAY: Goodbye Spasticity!

previous posts: 
{a walk in the park - airport day and the adventure that ensued when we arrived}
{pre-op day one - beginning and ending the day with tears}
{pre-op day two - when a doctor places scissors on your back and moves them around a bunch}
{quick almost 2-week post-op update - surgery was a success}

My nerves woke me up before the sun rose on surgery day, but it seemed as though my friends were up with me, because my phone was buzzing with messages of and support that crossed state lines, crossed oceans, and found us right there in our hotel room.

We didn't have to be at the hospital until about 9:30 am, and my surgery was tentatively scheduled for around 11, so I was allowed to drink water until 7:30 am, but no food - not that I would have been able to get anything down knowing what was ahead!

When the shuttle arrived to take us to the hospital, the driver was about to shut the door of the van when a woman came running out of the was the staff member who we'd befriended over the last few days, coming to give me hugs and good luck. She wrapped her arms around my shoulders, bent over as she leaned into the van. I don't remember her words, but I remember that my fear was gone for those moments as she held me, this woman who hadn't known of my existence until just days earlier.

I still felt the shadow of her arms on my shoulders as the van pulled up to the hospital and as we walked into Same Day Surgery. (Side note: I'll never understand why it's called "Same Day Surgery" when you're arriving for an inpatient surgery!). My mom braided my hair while we waited so that it wouldn't be a huge tangled mess after three days of lying flat in bed.

And then the nurse called us back. You know how some people just emanate confidence? Well, this nurse emanated nervousness. Nervous Nurse handed me a cup to pee in (sorry if this TMI?? I typed this and backspaced it like three times) and then fluttered and hovered anxiously outside the bathroom door as if I couldn't manage the task myself. Then she took my weight and height. Then she forgot my weight and height. We went through the process again so she could write the numbers down.

Then she brought us to a private pre-op room, where a hematologist came to talk with us. He was only there because I have a bleeding disorder, which I've mentioned on this blog basically means that I bleed a little more than most people (a fantastic characteristic for someone with balance issues!!!! (*sarcasm)). The clotting factor that I'm deficient in was tested on my first pre-op day, and my level came back at 33%...three percent above the cutoff where they require special intervention during surgery to prevent excessive bleeding. That glorious three percent spared me from the hematologist's concern...he was all, "EVERYTHING SHOULD BE FINE, YOU ARE GREAT" but then my mom asked if that factor deficiency could increase my risk of cerebrospinal fluid leak from my spinal cord and he turned a little pale and ran off to Google that. (My mom is a teacher. She asks all the tough questions.) (spoiler alert: it doesn't. Or more precisely, "it shouldn't," which is doctor-speak for "I'm not really sure but I think you'll be fine but don't sue us if you're not." :) ) 

Our next visitor was a member of my pain management team. She was really nice and extremely smiley for someone who deals with pain all day every day. Because of my bleeding disorder, she explained (with a smile) that things would be a bit more difficult...I can't have the ibuprofen-based meds that they usually give SDR patients because those are blood thinners. Everything will be fine, though, she said, still smiling, because luckily things like Tylenol exist, which are not blood thinners.

Then Smiley Pain Management Woman left and Nervous Nurse came back into the room. She proceeded to inform us that the hospital has a delightful new policy in which patients have to undress completely and be "sanitized" with alcohol wipes. She averted her eyes: Do you, um, want me to do it or do you want your mom to do it? 

(Therein began an awkward pause as my mom and I considered each equally uncomfortable possibility. Is there a "neither" option??)

We decided to let Nervous Nurse do it and I'll spare you the details except to say that her awkwardness reached a record high in this minute and a half. Not that I blame her, but the whole experience might have been a little more relaxed if she had been able to look me in the eye. ;)

Next up: the hospital gown and oatmeal colored socks. I endured the hospital gown, but I decided to forgo the socks because seriously? Hospitals are unpleasant enough without oatmeal colored socks...they could've at least picked an actual color. It didn't matter, anyway, because Nervous Nurse dropped one of the socks and couldn't find it.

Then she looked at me with an expression that I can only describe as terrified.
"Now it's time for the......" she squeaked, and she ran out of the room.

I'm not afraid of IVs, but there's no denying that having someone poke you with a needle repeatedly is sort of unpleasant. Especially when they don't know what they're doing. I looked at my mom with resigned laughter. I'd give Nervous Nurse a chance...more than likely, two chances - because that's usually when they have to go ask for someone else to try - but her abject terror at the prospect of giving me an IV told me everything I needed to know. I already knew that she wouldn't be able to get a needle in my vein.

When Nervous Nurse returned, my mom tried to get her to relax by lightening the mood with the story of Ben (not his real name) and the chaos that ensued when he tried to get an IV into me last summer.

Poor Nervous Nurse. The story didn't have the mood-lightening effect that I think my mom had intended. On the contrary, Nervous Nurse looked a little faint after that story. But she put on her brave face and I put on my brave face and stuck out my arm for her to try.

I told her that my left arm usually has better veins, but she wanted to try my right arm..."I'm right-handed," she said, "so it's easier for me," she admitted.

She searched for a vein for a while, then tried the crook of my arm, a little below where I'd had blood drawn. That was a no go, so she turned to my wrist next.

"Wrists...wrists kind of hurt," she said. (Sigh...yes...unfortunately I know this already....) "So I'm going to numb the area first."

"This part won't hurt," she said, as she poked me with a needle. (It kinda hurt)

Then came the next needle...the actual IV needle. (It hurt)

She dug around for a while in my wrist and just couldn't get it to go in, so she ran for someone else to try. This time, a bunch of nurses came in. Two worked on getting an IV in my hand, and another asked me if I'd like her to distract me.

"Sure!" I said, so I showed her the photos of the zoo animals on my phone with my left hand while they prodded around in my right hand. We actually had a coherent conversation about the St. Louis Zoo and her family while they were making their attempts with the needles, and I have to say, the distraction was actually legitimately helpful. :) They couldn't get the needle in, though, so they called in the anesthesiologist to try.

I don't know how many of you have seen Grey's Anatomy, but this anesthesiologist seemed like she'd fit right in with their cast...I loved her! She looked a bit like she could have been Arizona Robbins' sister, so I'll call her Dr. Robbins. Anyway, Dr. Robbins got to work searching for a good vein on my left hand, and while she looked and tapped, we talked. She admitted cheerfully that she doesn't usually like working with patients in the teenage to early twenties age group.

"I like you, though," she said, suddenly serious. "You're cool...your body involves two of my favorite specialties, hematology and neurology." (HAHAHA I've gotten compliments before, but never that one!)

At least my IV tape had teddy bears on it!
Dr. Robbins found a vein that looked promising(ish) in my hand, but mid-needlestick, it didn't look like it was going to work.

She clasped a hand around my wrist. "Try to relax your hand," she said, her voice subdued in concentration. "I've almost got it...almost...if I don't get it this time, I'm going to call in ultrasound...but...........yes. YES, I've got it!!!"

She actually had to use a preemie needle for that IV (I guess I still have preemie veins!!) and she explained that it wouldn't be sufficient to use as an IV for the duration of my surgery, but rather than subject me to a fifth needleprick, they'd use this one to put me under and find a better access point once I was asleep. Later I'd find evidence that they'd tried several times to start an IV in my legs, but the one they ended up using was in my left wrist. (For any parents of younger kids who might be reading this, please note that in kids younger than nine-ish, they put them to sleep with a mask and do all IVs once the child is under.)

Then we talked a bit more about surgery and post-surgery stuff. She'd be the anesthesiologist watching me in the operating room during my SDR ("SDRs are SO cool...I love them!! That neurosurgeon is a genius," she said.). When I mentioned that I'm prone to nausea issues post-surgery, she got her game-face on.

"I'm the same way...and there's nothing I hate more in this world than throwing up, so I'm going to do everything I can for you to prevent that." :,) She explained that she'd ask my neurosurgeon to administer propofol as one of my anesthestic drugs during surgery, which would help reduce my nausea and would also have the benefit of making the EMG nerve signals a bit clearer. She also said she'd administer more fluids, getting me to the top end of "euvolemic" (normal fluid balance), and since I'd told her I was a neuro major in college, she excitedly explained the details of how they'd use electrophysiology to determine my hydration level during surgery.

Next, I met a few more members of the neurosurgery team who would be present for my SDR (mostly observing and monitoring...Dr. Park does the actual surgery from start to finish).

And then: we waited. They were running a bit behind schedule, so it looked like it was just going to be my mom and me in the room for a while, waiting anxiously...but then my phone buzzed with a message from an SDR mom, an incredible woman who lives locally and whose daughter received the surgery a couple years ago and has thrived. This woman now pays it forward to other SDR families, and she often comes to the hospital on Friday mornings to visit SDR kids and drop off goodies for them.

She was waiting in the Same Day Surgery waiting room, and she said that if my mom went and brought her back, she would keep us company. <3 This woman made all the difference in the world while we were waiting...we had never met before, and yet she told us stories and laughed with us and conversed as if we'd known each other for years. Tears spring to my eyes even now as I write about her kindness. This experience has been times, it's been one of the hardest things I've been through. But it's also been one of the most beautiful. Near-strangers became family in an instant, reaching toward us with open arms. My mom and I were afraid of being alone in an unfamiliar city, but we soon found that we weren't alone at all. We were never alone. Everywhere we looked, we found love and solidarity.

When the neurosurgery team was ready for me, they came in and administered "sleepy medicine" into my IV. I remember it going in, and I think I remember hugging my mom before she left, but that's it. My mom waited in the Ronald McDonald room for all 4.5 hours of my surgery, and she received updates every update when they'd finished positioning me and setting me up for the actual procedure to begin, an update when they finished my right side, an update when they finished my left side, and an update when they were finishing up.

All in all, he cut about 2/3 of my sensory nerves from L1 to S2. I don't really remember waking up in the PACU, except that there were several medical people hovering over me and I couldn't stop shivering. My next memory is being in my teeth were still chattering and my face was itchy, which they said was a side effect of all the medications. But I never felt sick to my stomach at all on that first day (THANK YOU, Dr. Robbins!!!!). I really don't remember much else about this first night.

Except this: my legs felt incredibly heavy and numb (partly from the nerves severed and partly from the epidural), but wiggling my toes was easier than it's ever been in my entire much easier.

I closed my eyes and slept soundly for the rest of the night. Dr. Park calls his work "slaying dragons." And now, after 23 years, my dragon was gone. 

(Coming soon: post(s) about the rest of my hospital stay!)


  1. My favorite part was reading about Dr. Robbins. Because of your description I could totally picture her <3

    1. Hahahaha I thought of you guys when I wrote that part!

  2. Wow I feel bad about all the IV's! But yeah perks of children's hospital as a young adult. I had an endoscopy this morning and because my doctor is still pediatric (and wonderful) I was in the section with the children and the super nice pre-op nurse. Even though the recovery room nurse was annoying and thought I was a boy (Girls can have short hair. Also read your chart) But it went good, just waiting on the biopsies.

    1. I'm always a hard stick, so unfortunately multiple IV attempts are kind of the norm for me. :( I'm glad it (mostly) went well and happy that you could have your endoscopy in the pediatric wing...I agree that it does make things a bit easier! UGH, sorry to hear about that annoying assumption-making nurse though!!

      Sending positive vibes your way for good news on those biopsies! :)

    2. Thanks K! Best wishes on your recovery!

  3. OMG, so wait. Does this mean I am part-dragon? And if so, when do I get my fire-breathing abilities? ;)

    Glad things went well-ish during this part of your experience! <3

    1. Tara, you mean haven't gotten your fire-breathing abilities yet??? Weird. I got mine a long time ago but they've been gone for about two weeks now. :/ Keep trying...I believe in you!!! ;) ❤️

  4. WOW! AMAZING POST! I like the "dragons" term better than Oliver Sachs term "the bully". "Dragons" is just cooler. :) Its important to remember the body gives us the spasticity as a way to help us. I love Dr Robbins too! I wish I had her around during my 2 surgeries because for me the dizziness and feeling of wanting to throw up was worse than the surgery related pain and if I didn't have so much nausea I wouldn't have been such a jerk. I turned into a loud a**hole after surgery haha. I would have preferred the needle sticks to the mask with that awful smell any day. Nervous Nurse may want to consider a different career. Can you please do a detailed post on what no spasticity feels like? Or email me with a detailed description when you have free time? I'm dying to know what that feels like! I pray you continue to recover!

    1. Hi Margot!! Thank you for the kind words - I'm glad you liked the post! :)

      I guess we have differing views on spasticity! ;) I sort of see how it "helped" me, as the SDR revealed a lot of weakness in muscles that had previously relied upon spasticity. But especially now that it's gone and I see how much easier it is to move, I realize that it wasn't doing me any favors. From a neuroscientific standpoint, spasticity doesn't develop as an adaptation to help us out (i.e., I disagree that our bodies gave us spasticity to help us) - the predominant theory is that spasticity is the result of a spinal reflex that our CP brains are unable to regulate properly.

      Ha - glad to know you're also a Greys fan! And yes, I can definitely relate to the misery of nausea and dizziness post-surgery. :( Unfortunately (as I'll share in my next post), I wasn't able to escape the nausea completely...I was only spared from post-anesthesia nausea (thanks to my Dr. Robbins!!) but nausea after SDR is overwhelmingly common, if not expected, and so it did come for me over the next few days in the hospital!

      I hate the smell of those masks too!! They also make me feel a bit like I'm going to be suffocated. :( No fun.

      No spasticity feels's hard to capture with words, even, but I will definitely do my best to describe that in an upcoming post!!!

      Thank you for the prayers and support! ❤️

    2. Hi K,
      You're very welcome! Thank you!!!
      Interesting. I heard spasticity was related to a reflex that prevents us from over extending muscles and served a protective function but in CP the reflex is in overdrive. Maybe that theory just became outdated since I read that in the early 2000s. You know more than I do in that regard. :) I haven't seen much of "Grey's Anatomy" but the episodes I saw I liked. Yeah my little kid brain thought the doctors were literally trying to kill me with that mask. Hence my relentless screaming. I felt sorry for my surgeon a few years later given my behavior but I was 5 so I couldn't control myself.

      Do you still have an exaggerated startle reflex without your spasticity?? Or do you not know yet?? Any idea???

    3. Hi Margot,
      Ohh, now I'm understanding what you mean about spasticity "helping" us. You're absolutely right - the spinal reflex that I reference in my reply to you above is the same reflex that you're talking about...the stretch reflex. In most people, the stretch reflex is only activated in extreme cases (overstretching) to protect the muscle from damage, because their brains usually shut it off. But our brains can't shut it off, so the stretch reflex is activated even by small, safe stretches like putting our feet flat on the floor or straightening the knee to its normal range. That's spasticity. I still have the stretch reflex now that I've had SDR, but now the signals that activate it are more balanced, because the spinal nerves that were spastic (overfiring and sending that stretch reflex into overdrive) have been cut.

      Aww...I am feeling bad for 5 year old Margot!!! I had a similar scary experience where they were putting the mask over my face and I started to cough, so I felt like I couldn't breathe...I tried to take the mask off, just for a second to catch my breath, and the anesthesiologist pressed it down. I fell asleep thinking that I was dying and that NOBODY KNEW. :( So I can definitely relate to the mask scariness.

      Good question!! Yes, I still startle just as easily as before, but now I only tense up for a few seconds and then I feel normal again! That's kind of crazy for me, because I am used to being startled and then feeling tense and frozen for at *least* a couple of minutes. And have you ever felt your quads firing/jumping repeatedly after something startles you? That used to happen to me all the time but now it seems like my quads just tense for a second, then relax immediately. It's very strange. :)

    4. Hi K,
      Yes exactly! I meant "stretch reflex"! :) Sorry I forgot to mention the name of the reflex. Good news is doctors constantly monitor breathing so they wouldn't have let us stop breathing but of course I didn't know that at 5.

      WOW! That does sound amazing! I can use breathing techniques to relax some of the tension after my startle reflex goes off but it must be so darn cool to have your body relax on its own with no intentional input from you!! Kinda jealous now LOL. Yes I have felt my quads fire. I have issues with heights also. When I look down and my body tenses I can almost feel my brain itself "firing" like "zap" behind my ear(Doctors told me this is NOT a seizure, I'm just in tuned with my body enough to feel some of the electric activity. I know someone with a TBI who can feel the same jolts)

      Have you had an experience yet where you can feel the CP brain react but the new SDR nerves do NOT react to the CP message at all??

    5. Hi Margot! Interesting...I don't think I've ever had the experience that you describe, so I can't really think of an instance where I felt my brain react but not my nerves! I guess my startle reflex is a bit like that, though, because my "CP brain" still startles just as easily as before, but my body doesn't respond in the same way since having SDR. :)

    6. Yeah I guess some people with brain injury have that and others don't. Cool! Looking forward to your next updates. Has the tingling/itchy feeling improved? Do you have numbness?

  5. Seems like giving you an IV is always an adventure for the nurses! I love your IV tape haha. I've never had a teddy bear one, not even when I was very little. (all white and boring)
    I'm happy that your dragon is gone AND that you can wiggle your toes easily!

    1. Hi Oana!!! Yesss, you're right, it's always an adventure! :( I have terrible veins. My IV tape has always been boring too - which made me appreciate those teddy bears extra!

      Miss you so so much and hope you're doing ok! ❤️ I think of you often! Thank you for stopping by to read and comment on my blog...I will email you soon!

  6. I'm so, so glad you found such amazing support surrounding you so far from home. Wow, a bumpy ride with an amazing result!!


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