Wednesday, August 31, 2016

Doctor's Appointment, Surgery Talk, Numbness, Collapsing, and Waking Up on the Wrong Side of the Bed

Hiii! I just had my 8 week post-op doctor's appointment, so I wanted to give you all an update.

First, let's talk X-rays. I had to get two of them before this appointment. I'm not sure if I'm psyching myself out or it's a CP-related thing or a combination of both, but you know how the X-ray techs put you into a position and then instruct you to stay "very, very still" while the picture is being taken?? It probably doesn't help that the position is kind of awkward to begin with (for hip X-rays, you usually have to "frog-leg" your leg out to the side) - but as soon as I'm told to stay still, my leg tenses up and it takes everything in my power to keep it from spasming out of position.

My totally accurate rendition of the angry X-ray tech
I managed to stay still enough for the images to be captured clearly on the first try, which was nice. I'll never forget the time 8+ years ago when I needed some hip X-rays after my accident, and I moved TWICE (finally, the third attempt was successful). IF LOOKS COULD KILL - the X-ray tech was so angry with me ("YOU. WEREN'T. SUPPOSED. TO. MOVE !!!!!!" she said, as if I was being purposefully defiant).

My recovery has gone pretty smoothly (still NO PAIN, YAY), but I did have two concerns that I wanted to ask my doctor about at my appointment.

First - ever since my surgery, my leg started giving out on me at random! I wouldn't even be tired...sometimes I'd be walking and I'd get a really strange, indescribable feeling in my leg for half a second, and then my whole leg would just stop working and collapse on me. It was a little freaky, unlike anything I'd experienced before. I'm still experiencing that a bit, but it's been decreasing in frequency as the weeks have progressed.

Second - my scar/incision site is numb, and so is the skin around it.

As for the collapsing, my doctor said that after surgery, everyone (CP or not) is going to experience some degree of muscle weakness, but for someone like me, with a neuromuscular condition like CP, that weakness will be exacerbated. He explained that my leg's "collapsing" is partially a muscular issue (i.e., muscle weakness because they had to mess with the muscle itself) but it's also - because of my CP - a neurological issue (i.e., post-surgery, my brain is having a hard time figuring out how to use my leg again, and it's sending out confused, mixed up messages). As my brain and leg figure out how to work together again, this weakness will dissipate, but he estimated that it will take about a year for things to be truly back to "normal."

As for the numbness - if you're curious - he said that's to be expected, especially because they re-used the incision site from my first hip surgery. As time goes on, I will likely regain some feeling in that area, but it will always be somewhat numb, and he reassured me that it's not anything to worry about and it won't interfere with anything. The numbness occurred because when they made the incision, they had to cut through nerves in my leg, and the scar tissue that formed is not innervated.

After addressing these concerns, he tested the strength in both of my legs and was satisfied, and then we checked out my X-rays. I wish I had pics of them here to share with you, because they were really cool! The bone is all filled in (YAY!), but you can see exactly where the pins used to be because the bone hasn't completely healed yet. Full healing will take about a year or so, and after three years, he said we might not even be able to see (via X-ray) that there were pins in my leg to begin with. :)

Now that my eight weeks are up and the X-rays confirmed that the bone has filled in, I don't have to be so careful about not falling, which is really exciting. ANDDD...I don't have to go back for another appointment until February!

I don't know if I mentioned this previously or not, but in the pre-op room on the day of my surgery, my doctor was talking to my parents and me about future surgeries and other interventions like Botox injections in my legs to further improve my mobility and reduce spasticity. This kind of freaked me out (one surgery at a time, please!), and I was nervous that we were going to schedule something ELSE at this most recent appointment.

He was happy with how I was functioning though, and so am I, so we decided to postpone that discussion until AT LEAST February...and maybe even a full year from now so that we can ensure that my leg has healed completely. :)

"At this point," he said, "I really think less is more, and I want you to be the one who decides if and when we do more surgery."

That made me happy. I might consider other surgeries in the future, but for now, I'm looking forward to putting this all behind me and enjoying my life with less pain.

The lack of pain has been the most noticeable outcome, for sure, but there are other, subtler differences, too. For the first time, I can carry my dogs' full water bowl the ten feet across the kitchen without sloshing water onto the floor. I used to have to take tiny little inch-steps across the kitchen, concentrating with every fiber of my being to minimize spilling - but ever since the pins have been out, my hip doesn't drop as much, so my gait is more even. My dogs are definitely enjoying this new development - maybe even more than I am - because when they're thirsty, they no longer have to wait five minutes for me to inch across the kitchen with their water bowl! ;)

I've noticed that my balance is better, too! I've still got CP balance (i.e., if you push me, I'll end up on the floor faster than you can apologize), but I feel a bit steadier.

And...this morning, I woke up curled on my LEFT SIDE. Ordinarily, this might seem like a ridiculously mundane detail, but it's been 8.5+ years since I've been able to sleep on that side. It felt like a privilege. A luxury. A victory.

For the first time in 8.5 years, I woke up on the wrong side of the bed 
- and I can't stop smiling about it. :)

6 comments:

  1. HOORAYYYYY! Oh I'm so pleased! It all sounds utterly positively glorious, and I'm really glad this surgery has been the answer to all that pain! Very pleased the doc is respecting your wished re timescale for anything else - it' always nice when they take your considerations into account, and it makes a big difference.

    May you wake up on the wrong side of the bed many more times <3

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  2. So glad you're doing good.
    I had X-rays done in April to see how bad my scoliosis is, and I understand your frustration. I moved twice too. (and I have pictures).
    And being able to carry your dogs' water bowl is an amazing skill haha (I can't do it YET).
    I had botox injections done many times and it was worth it. I'll spare you the details. (Let's just say a girl looked at the blood on my legs and asked my mom, in shock: "What did they do to her?"). But seriously, it's not a big deal.
    And waking up on the left side is amazing. So happy for you!

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  3. I love that you're doing so well and hope that you wake up on the wrong side of the bed over and over again! <3

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  4. K!!! I did not know you posted this! Fun fact: My hip incisions are numb too! (Still!) But the others are not. PS I love your drawing of the angry X-Ray tech! (How mean was she???) :(

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  5. K! How did I miss this post??? I loved reading your update! And count me in too with the numb hip incision (which was used during a subsequent surgery as well!) I have not missed my hip/hip incision sensation, so I hope you won't either! :p

    Also, oh yay! I'm so happy for you and your pup that you are now better able to carry the water bowl! That's a big deal! Also, it may carry over to other beverages too, which is exciting!

    And oh wow, to wake up on the wrong side of the bed! This is what dreams are made of! (Yes, that is yet another Hilary Duff reference that you likely won't get, but that won't stop me from making it!)

    So happy for you, friend! Thanks for the update! <3

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  6. I'm so glad you are doing well! I do have one tip to add about success in college with a disability- befriend other people with disabilities,especially upperclassmen. They already know the system and can teach you how to get professors to announce test/quiz dates atleast 1 week in advance (at my school you have to fill out a form a week in advance so they have a testing room for you), how to communicate with professors regarding accommodations, empathize with you over the slowness of disability services, and generally just be someone who has some idea what your experience as a disabled college student is like.

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