Fight of the Syrinx

Up and Running, Sort of.

” Remember how far you’ve come, not just how far you have to go. You are not where you want to be, but neither are you where you used to be.” Unknown

The first 2 weeks I was home went by in a flash and before I knew it I was on my way to my first out patient physical therapy appointment. My mom drove me since I was not allowed to drive. When I arrived and met my new physical therapist I knew immediately that I was in good hands.

Over the next 6 months my PT and I worked together 3 times a week. And amazingly I slowly started to make progress. I went from dragging my left foot and using a walker, using my walker with little to no foot drop, walking with a cane, and finally walking with no assistive devices!  

My out patient physical therapy office.

Back to work.

After about 3 months after being discharged from the hospital, I went back to work. I worked as the coordinator of clinical operations for the Wound and Ostomy department. I went back to work when I was still walking with my cane. Thankfully most of my job was sitting but there was a small portion hat did require walking.

The first time I walked back into the hospital was really hard for a few different reasons. First the last time I had been in the hospital was when my whole life got flipped. So I had a bit of anxiety from being in the place that had been my prison for a month. Second I saw all the people I had been working with for the past 9 years. And I was swarmed by people that either came up to talk to me or that just stood back with questioning looks on their faces.

After the initial shock of coming back to work things got better. I was able to get back into somewhat of a normal routine and felt like life was going to be ok.

New Goals.

I made a lot of little goals along the way and slowly checked most, if not all of them off. So I decided I wanted to make a big goal. This new big goal was that I wanted to take a trip with the kids to Disneyland…

Now many people would think what are you thinking. You have to walk so much at Disneyland. But heres the thing, I had a horrible experience and had progressed so much and where better to test my new legs than at the happiest place on earth.

I talked it over with mt PT and she agreed that I could totally do it! We started to focus a lot on strengthening my hip flexors and ankles since they are required for a good steady gait (a persons manner or walking).

I was still experiencing a slight foot drop, to learn more about foot drop click here, but I was adamant that I didn’t want to be in an AFO or leg brace. We started to experiment with kinesio tape, anf eventually found the best place for me and it helped keep my foot up!

Disneyland Here we Come!

In May 2017, 6 months after my surgery we flew to Disneyland. My sister, Bailey came with us to help with Jasper and Evey just in case I had any issues. First let me say that we had SO much fun! but all that fun was a lot of work for me. Our first day we walked 7 miles! I was beyond tired and sore. When we came home the first night my leg was shaking and my foot was on fire from the neuropathy.

The next few days we didn’t do nearly as much, I learned to speak up if I needed a break. And it worked out. We didn’t have any big catastrophes I only tripped up a few times and Michael and Bailey were always there for me.

The trip was hard but it showed me that I was going to be ok, I could live a normalish life and enjoy things with my family. It also taught me to pace myself and that I had to speak up with I was too tired or too painful.

The New Normal.

After the trip life went on as normal or as my new normal. But by the end of 2017 I started to notice some new and concerning symptoms…

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