Skip to main content

Syringomyelia Has Arrived (Posted 12/12/2016)

It is an understatement to say that things have changed since October. The past month and a half have been an absolute rollercoaster. Neurologically, I have begun to deteriorate. My muscles cramp up, are weak, tingle, spasm, pain, and dizziness has overwhelmed me. I thought it might have been all in my head (no pun intended), but it turns out it wasn't, which is kind of a relief. On December 1st, Dr. Delashaw, my neurosurgeon, told me that a syrinx has developed in my spinal cord causing even more nerve damage. This is called Syringomyelia.


Over 50% of people who are diagnosed with Chiari end up suffering from Syringomyelia as well. Typically they find the two together already coexisting and they take care of it. I remember how fortunate I felt to not have a syrinx present when they found my Chiari. I thought I beat it and that it would not come. Obviously not the case. It is considered a complication from surgery. I have read up on it and a syrinx can develop after surgery as well. Yay me! No one knows exactly why it happens and how it develops, but there are theories. All I know is that my surgeon does not want to operate yet because the risks outweigh any potential benefit. So we just wait, watch, go to physical therapy, and get treated at the pain clinic. I got answers, but no real solutions. In reality though, there isn't a true solution.


Due to all of this, I have come to the decision that I need to take a leave of absence from Cornish in hopes that I get to come back once/if I get my health back in control and can exercise let alone just move again. Even though it was my "decision," I felt forced into it. I could feel my health just screaming at me to leave, but my heart saying that it is not fair that you have to leave your dream place. The place where everything is okay and the support is never ending. I question all the time why me, and I guess anyone who has to deal with how awful this is asks themselves. I hope I find an answer at some point in my life... I hope that this leave of absence doesn't turn in to a withdrawal. I hope that my limbs and spine work again fully like they used to, and that my balance comes back.


I was on the mend. I was doing so well, and I felt good after surgery. I felt myself coming back and I felt confident going back to school. Yeah I wasn't full time dancing, but I was still dancing somewhat. That is better than nothing at all. Now I am in the nothing at all state not having dance in my life, and I have never felt so lost, sad, angry, frustrated, and scared in my life. That feeling of health coming back to me was just being a tease, and I hope the "tease" comes back but stays for good next time. There better be a next time.

Comments

Popular posts from this blog

3 Months & Counting (Posted 8/8/2016)

Hello everyone. It's about time for another update! Many things have happened in the past three weeks, but I just find it weird that I'm a day away from my three month post-op mark. It feels like it was just yesterday that I was still a freshman at Cornish moving out and trying to prepare for the surgery itself! July 24th-31st I was able to be in Huntington Beach, CA with my best friend Megan! It was such a perfect getaway, nice and relaxing. It was so great to see her and to be able to escape my reality, even if it was just for a week. I could write about that trip for hours, so I will just keep it at that so I don't begin to ramble. When I got home, I didn't give myself a break. The next day, I took a contemporary class, taught a class, and went to physical therapy and I did pretty well I have to say! I've been working really hard in my rehabilitation process with physical therapy and massage therapy and it's been helping a lot. At my 6 week appointment, I was...

2 Weeks Post-Op (Posted 5/23/2016)

I cannot believe it has only been two weeks since I had my massive surgery. I can honestly say that I am pretty darn proud of how far I have come since May 9th. On a side note, I was trying to create a mid-week post, but for now at least I think updating once a week through my blog is most beneficial for myself. This way all of my followers can get a summary of how things are and I can reflect on my personal progress! So here we are. This past week has been a lot easier than the last. After my puking incident, we were able to get my pain under control and have it stay that way consistently. I was noticing a pattern of what times during the day I get tired or need rest and when my pain is increased. By switching some of my medications around on my time schedule, I was feeling a lot better and more relaxed (to the highest degree a brain surgery patient can be). Wednesday was my first day out of the house since Oliver's adoption and it was so successful! I'm going to be honest and...

Day 4 Post-Op (Posted 5/13/2016)

Well, I had my surgery! Check in time for it was at 6am, so I was up bright and early along with my whole family. My anxiety level was through the roof as expected. The first nurse then called me in and took me back to registration and I had my mom come with me. At that point I had changed into my gown and was on the hospital bed with an IV line in me. It was all happening so quickly and I was so scared that I started crying. Oh and of course I am the youngest patient in there... But my nurse Jenn at that time was super nice and helped me out and so did my mom. Then I had to say goodbye to my family and go down into pre-op and OR. I started crying again during pre-op cause there were so many weird noises, oxygen tanks, needles, and bright bright BRIGHT big lights. My anxiety was even higher. So after I met my anesthesiologist, I was given a calming medication (aka "happy juice") and right after they inserted that into my IV. After that moment, I blacked out and don't reme...