Saturday, July 29, 2017

3 Weeks Post-Op Update!

I'm still working on my hospital stay posts, but I had so many people ask me yesterday for an update on my recovery that I figured you guys might be wondering too.

Week two was rough.

The numbness in my legs started slowly wearing off starting the night I was discharged from the hospital (Wednesday, day 5 post-SDR). First, it was really just my feet that started regaining sensation. They were overly sensitive and really, really cold. I was wearing socks and slippers at the same time, and even that didn't seem to warm them up at all. Then I started getting tingles in my legs...nothing excruciating, but it felt like static electricity all from my hips to my calves.

By Saturday night (day 8 post-SDR), my legs felt achy, but I didn't think much of it. I thought my muscles were just sore because I'd never used them without spasticity before.

I thought wrong. Saturday night was a warning, a sign of the misery that awaited me. As the days progressed, the achiness intensified. By Monday night, the achiness had turned into burning, shooting pain, and the tingling was no longer the benign static electricity sensation. Soft blankets felt scratchy and itchy against my legs, and my knees hurt when they touched each other.

I was going to bed at 8 pm and watching the hours creep by until the sun started rising. And nothing helped. I tried Valium, magnesium (the neurosurgeon's suggestion), sleeping aids. I was more exhausted than I'd ever been in my entire life, and yet sleep refused to come for me.

On Tuesday afternoon, I sent off an email to the PT who assists Dr. Park and helps with administrative tasks. She assured me that these nerve pain issues were normal (and older children and adults are more prone to them) and she forwarded my email to the physician assistant.

Tuesday night, the tingling, itchiness, and nerve pain were worse still, and my mom had timed my muscle spasms and said they were coming every 30 seconds or so. ("I'd watch you start to drift off to sleep," she said, "and then your leg would spasm and jolt you awake again!") Not being able to sleep was the most frustrating aspect of this whole situation, but these issues were also plaguing me during the day. My legs felt like they were getting a low-grade electrical shock, and on top of that, it felt as if I had a sunburn (this "sunburn" was worst on the bottom of my heels). Even wearing a soft pair of leggings was uncomfortable.

On Thursday night, we called the St. Louis office and the PA wrote me a prescription for a drug called gabapentin, which is an antiseizure med that also helps with nerve pain. I didn't want to take it because some of the side effects are scary, but she assured me that it's low-dose and I'd only need it for a short time.

Out of sheer desperation, I took it. And it WORKED.

I took it about two and a half hours before bed (it takes some time to work), and the first few nights of taking it, I still had some tingling, muscle spasms, and hypersensitivity in my legs and feet, but my symptoms were diminished enough that I was able to fall asleep.

Now, my legs feel pretty much normal again! I still get some tingling and itchiness when I put pressure on my legs, and my feet are still hypersensitive (and sometimes it feels like they have pins and needles), but these issues don't interfere with my life at all. I'm not thrilled about having to take the gabapentin, but I'm beyond relieved that it's working for me, and I'm hoping that I'll be able to stop taking it in the next couple of weeks, once my nerves have calmed down. And no side effects yet!

Physically, I've been working hard in PT (an hour a day 4 times per week, and then I do exercises and stretches at home as well). I'm amazed at just how weak my muscles are - exercises that I've done "well" my entire life now make my legs tremble! For PT, I'll sit on the edge of a table or chair with my legs bent, and then straighten one knee and hold it there for ten seconds, and my leg will shake uncontrollably after a few repetitions. It's kind of frustrating, because in my head, it should be easy, and yet it isn't. It's so, so hard.

At the same time, though, I am in awe over how easy it is to move! My legs feel so free and light without spasticity. It's as if I've gone from having tight elastic bands pulling on my muscles and heavy chains weighing down my legs to having nothing at all. Walking up stairs feels like floating, and straightening my knees is so simple now!

I'm now walking independently all through the house. Outside of the house, I can walk for short distances on my own, but I usually hold someone's hand for balance because my legs still give out on me sometimes. According to my PTs, it takes about six weeks to build muscle, so I guess I have to be patient as I wait for my muscles to come through for me. Every day, though, moving feels walking improves overnight, because my brain is constantly working on figuring out new pathways for movement now that it can't rely on spasticity.

For the most part, the feeling has returned in my legs, although I still have a numb area on my left leg from the top of my thigh to just above the knee. My back is still sore, too, and it's tricky for me to bend over, but that's been improving gradually as well. My scar is 3 and a half inches - a bit longer than I expected, but so worth it. :) I'm in awe over my new legs.

One intriguing "side effect" of SDR that I've noticed is that the discrepancy between my two legs seems much more pronounced without spasticity. My right leg has always been more affected than my left, but I think spasticity evened out some of the difference because my more spastic right leg was able to rely on that artificial strength, and my less affected left leg was hindered by spasticity. Now that the spasticity is gone, my right leg is noticeably weaker throughout most of the exercises (except some of the hip exercises, because my left side is still not 100% after my broken femur/pin removal)...and my left leg is significantly more flexible.

I'll be back soon to write more. Thank you all so much for your encouragement and support! Week three has been such an improvement over week two, and here's hoping that the upward trend continues. :)


  1. Wow such an informational update. Most of all, I'm happy that you found a solution to your nerve pain. That sounds awful. And 3 weeks post-op now! Your muscles are halfway built!

    1. Thank you Tonia. Halfway built...I like that way of thinking! ;)

  2. So great to hear from you! :) So glad you got through Week 2, how terrible! Have patience with yourself - you've been through a big change. Give your brain the time it needs to catch up - and have faith that it will!

    In other news, your description of nerve pain is incredible! I have it as well, and static electricity is the perfect explanation for what mine feels like 95% of the time. That other 5%? Yeah, that's no fun - and I'm sorry that you had to experience it. Here's to hoping you're through the worst of it!

    1. Thank you Tara. <3 I'm sorry you can relate to this type of pain, but thank you for the encouragement!

  3. Hi K,
    OW! That sounds awful! Is that level of nerve pain common in SDR?? Do you think the PT exercises made the pain worse or better in any way?? I'm so glad the pain is now manageable. The shaking and trembling may also be a sign of brain rewiring as we discussed in the past. As Tara said be patient. Nerves recover but they recover slowly. I know how frustrating that is. If you need to vent feel free to email! Don't worry about how things "should be". Just let your nervous system find its new flow at your own unique pace. You are recovering very well and taking it all in stride. Well done! I pray for you daily. Can I do anything for you?

    1. Hi Margot! According to the "main PT" in St. Louis, that level of nerve pain is pretty typical for older patients. Younger kids don't seem to experience it as badly, but older kids and adults do. They used to prescribe the gabapentin to all older patients by default, but due to possible side effects it seems they've recently stopped prescribing it unless it's specifically needed/requested. One of the people after me experienced almost the exact pattern, intensity, and timing of nerve pain, though, and she also needed to request a prescription, so I wonder if they'll go back to prescribing it by default soon. Time will tell...but at least it was nice to be able to guide her through it a little. :)

      PT exercises made the muscle spasms worse (and they warned me that this would happen, because the muscles aren't used to working without spasticity) but they did not seem to influence the nerve pain...I spent a whole day resting to see if the nerve pain would improve, and it didn't until I took the medication. I seem to get almost total relief from that med, though, so I am comfortable and happy again.

      Yes, it definitely seems like my brain is rewiring to some extent because moving is easier every day!

      Thank you for the encouragement and prayers!! Those are enough, and are so appreciated. <3

  4. So sorry to hear of your struggles through week 2, and so glad for you that you have been having some relief and seeing some progress already since then! So fascinating to hear about the differences you are feeling on your left and right side!


Please feel free to leave a comment. I would love to hear from you. Thanks! :-)