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

Post a Comment

Popular posts from this blog

Post-Surgery #2 Update (Posted 2/11/2017)

Well it has been over a month since I have given an update on my health! First off, I was not prepared for the aftermath of my rhizotomy procedure. I was in so much pain, and I was unable to take any anti-inflammatories afterwards for two full weeks. Well, two weeks later I was going under for my second decompression...so it was interesting to say the least. It is now just about three weeks post-op, and I'm doing much better than expected. This recovery is slightly different than the last for me. I'm dealing with nausea/vomiting rather then pain. I'm already down to one oxy pill every four hours when last time around I was still on three. My fatigue is insane (mainly due to meds), so I find myself asleep more than awake. I have not been out of the house or my bed much, just due to the fact that it takes a lot out of me. I'm trying my hardest to keep my spirits up, but it has been more difficult this time around, most likely due to the fact that Cornish is in session and...
Post a Comment
Read more

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...
Post a Comment
Read more

End of Year Recap: 2020 Edition

Well what a year it has been .. Everyone knows this though, so I'm not going to go into too much depth about how crap of a year it was and say all the cliche things about how "excited" I am about 2021. As much as I truly do hope this next year is going to be a different year and hopefully full of positive change, I just don't trust people around me to make it happen! It takes all of us to work together, but there's too many people out there who don't think this can effect them, and you all know what I mean when I say "this." I'm thankful though to live in a state where things are taken much more seriously and cases are actually much lower than the rest of the country due to our state government taking those earlier precautions. So for that, I'm grateful.  This year for me has for sure been one of the hardest yet. I used to never worry about my work ... I've had a job or two since I was 16 years old, and to have to go onto unemployment for...
Post a Comment
Read more