To Surgery…And Beyond!

Hi TeenCP!! I’m so excited to be back and writing about my latest excitement. I am now finishing up the final months of my freshman year of college and have been introduced to the medical opportunity I’ve always dreamed of!

All my life, I was told that I had Spastic Monoplegia (a.k.a  tight muscles only in my left leg, complete with a limp, and balance problems that were given to me shortly after I was born) But a few weeks ago when I visited with a new surgeon, I was given a new look into really how my leg muscles were moving. It has been my goal in the past few years to reach my full potential physically and now, I was finally getting what I saw as the chance of a lifetime. Back in January, I did a “Gait Analysis” at a special lab in New York City. From this, the doctor would be able to see how exactly my muscles move and then decide what course of action to take so I can walk as well as possible That day was actually pretty cool-therapists covered my entire body in little ball-shaped sensors and used 3-D Motion Capture cameras to film me as I walked back and forth across the room. It was unlike anything I’ve ever done before, and what was even more awesome was the fact that I was utilizing the same basic technology that filmmakers use to shoot movies like The Polar Express. (Fun Fact: That’s why Tom Hanks looks extremely similar to his animated character!) As it turns out from the results of the gait analysis, my Cerebral Palsy can actually be considered “asymmetrically diplegic” because my right hamstrings an adductors are also abnormally tight. It was definitely a shock to have my diagnosis changed a bit after 19 years, but to be honest, it didn’t really bother me! Just hearing that a doctor could help me walk better was basically some of the best news of my entire life. Yes, I am actually excited about the surgery that I will be having at the end of May.

For the sake of keeping things “even” both of my legs will be operated on. My hamstrings and adductors will be released, meaning the doctor will “snip” them allowing them to relax. Together, this will not only give me better flexibility, but also prevent “scissor gait” and the turning in of my knee on my left side. Also, my left achilles tendon will be lengthened (by cutting the outer sheath of the muscle, allowing the tendon to expand) and this will help me walk “heel-toe” with a more regular stride. In total, five of my leg muscles are going to be operated on, and surprisingly I will be leaving the hospital with the ability to walk (using a walker), a short cast on my left leg, and splints to wear at night while I sleep. There’s going to be lots of Physical Therapy involved (of course) but I look at the process with a “no pain, no gain mindset” This Jersey Girl is hoping to be back on the beach as soon as I get my cast off…even if it means trudging through the sand with that new walker of mine! (How’s THAT for PT??) Also, I’m hoping to be able to eventually go ice-skating and zip-lining (two things I’ve never been able to do but have always hoped to try) once I gain my strength back! I like being able to look forward getting on the rink at Rockefeller Center or climbing to the top of a tree then flying through the air. It may sound a little crazy, but no one ever said that when you have CP, you can’t do these things!!

Since I’ve gotten the news that I’m finally able to have all of this surgery, I’ve done a ton of reflecting. How are you supposed to react when the thing you’ve dreamed about your entire life suddenly comes true? I now feel this awesome new sense of confidence and readiness to take take control of my body that I hadn’t necessarily recognized during my high-school years, and I think that’s one of the reasons that I’m not anxious about what’s in store for me. Maybe to those of you who have gone through this process before, I could be sounding slightly naive…but I can’t imagine being afraid of a medical  journey that basically encompasses all I’ve ever wanted for myself. One of my favorite quotes is, “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” I know that with  all the support I have from my family and friends, lots of determination and a couple of chocolate milkshakes, I’ll be able to conquer this journey and come out not only feeling stronger physically, but mentally as well. Throughout my teenage years, I’ve learned that the difference in how you feel about yourself and your future all depends on how you look at things. More than that, I’ve been re-inspired to never lose faith that everything will fall into place. Just thinking about the day when I’m completely finished with my rehab and walking in a brand new way gives me butterflies-it is all the motivation I need!!!

Keep on keepin on guys!! 🙂

-Annie

6 Comments

  1. Estevan Harris

    Hey Annie
    My name is Estevan Harris and I have CP spastic quadriplegic left side dominant (all my muscles are weakened, but it’s more severe on my left side). I read your story and like you, I have my own set of painful memories of surgeries, wheelchairs, and walkers. I’m so happy that you are excited about the surgery you’re going to have this month. I recently just recovered from my own surgery in December. My doctor lengthened the achilles in both of my heels and he also split two outer feet tendons in half. On each foot, he wrapped the outer half of the tendon around to the inside to help straighten out my walking gait. Before my surgery I used to walk with a crouch-like position (bent and hunched over) rather than being upright. Let me share with you a little bit of my experience during my surgical recovery time as well as my PT. I know you’ve experienced a lot of pain in your life, but nothing can prepare you for how you feel after you wake up from a major revision surgery. It takes a long time to get used to that amount of discomfort (pain) and don’t be surprised if your surgeon asks you to walk or at least put some weight on your feet on the day of the surgery after you wake up. That was actually the key to my progress and success. Make sure that your family really supports you during your recovery and they must push you to walk. I know I personally needed my family there, otherwise; I would’ve given up. The most important thing I can tell you is try to stay as positive as possible. Accomplish little goals and keep building on top of them.For example my personal PT goal was to walk as much as I could. So at first I started walking from my front door to the back door of my house and it was accomplishing little goals that made me want to get better to see how far I could go. So my main advice here is you’ve got to follow your Doctor’s orders… no matter what. I hope that your recovery is quick and you’re able to do all the stuff that you miss. Recognize your small progressive changes, even if they’re really tiny. Remember this, so you can remind yourself later that this whole painful long process was really worth it. I believe it was worth it for me. I now can flex my feet, walk without shoe orthotics, and stand/walk more upright. Best of luck!

  2. Crip Video

    I had both of these surgeries. It was a wonderful decision I never regretted. I have Spastic Diplegia. Try to keep your body moving and in a healthy alignment while your in the cast and after since a lack of movement caused me to have a wide stance when standing for about 3 years after surgery. I now know that I could have started PT WHILE IN THE CAST to prevent my odd gait. Look into that! Beach walking is the best kind of PT.

  3. Mariah Santiago

    Hi my name is Mariah I’m about to be a Sophmore in High School. And I have Spastic Bilateral Quadropleagic Cerebral Palsy I think. My mom brought up the idea of this Gait Analysis and was wondering about the process and turn out of your surgery? What can i expect if I were to decied to do this? I’m not sure .

  4. joe mcdonald

    have you looked into botox to relax the leg

  5. Annie Nason

    Hi Mariah,

    I’m so sorry I haven’t gotten back to you sooner!! I had wonderful results from my surgery and do not regret doing any of it! The gait analysis is simple, they put sensors on your body and limbs and then you walk back and forth across the room so they can film your gait patterns and from this the doc is able to see how your muscles move and what kind of surgery is ideal for you. Surgery wise, I was in the hospital for 2 nights and while I had trouble walking initially, it became a lot easier after the first few days. I was in a cast for 4 weeks and my rehab lasted about six weeks total. Now I wear a brace to keep my gait strong and am able get a heel strike. Overall I’m super happy with my results. I hope this helps you out and good luck!!! 🙂

  6. Al

    Hi Annie

    My name is Al & I’m from New Jersey.Your story sparks my interest about gait analysis. I’m going to research on this break in CP. I had botox shots in my right leg when I was about 6 & the same procedure you explained above. I’m 22 now & as much don’t want to admit it it’s getting worst for me. My knee is slightly going left. The most worst of it is that I could have did more to stop it exercising my legs more but hay I was 6. I feel like know I could handle it much better. Even though my family and friends never made me feel “Handicapped” or different I know people look. Please share your full experience in details after the surgery ;your likes & dislikes.

    Thank you & get to a speed recovery soon

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