Life with Chiari & Syringomyelia

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

 Hello everyone! It's nearing the end of Chiari Awareness Month, and it's been pretty darn successful if you ask me :) my birthday fundraiser I do every year raised well over $200 in less than 24hrs and I'm so grateful for that! I personally choose to donate to the Bobby Jones Chiari & Syringomyelia Foundation for SO many reasons, and they always take donations year round, so f eel free to check out their website at bobbyjonescsf.org to learn even more! As of Sept. 9th, I'm officially back to work in the dance studio, feeling as normal as it can be :) we are following all of the CDC and government guidelines and everything has gone so smoothly with no complaints that I've heard of. It's so so good for the soul to be back with my students working hard and creating again. It has been tough on my conditions to go from quarantine to working again, basically having a full 6 months off, but I think in another 2 weeks, my body will be all adjusted again.  Not a lot

Welcome back everyone and Happy Chiari Awareness Month! I cannot believe I left this blog untouched for THREE years.. & yes, there’s a ton of explanation that goes along with that. In this post, I’ll just update you all on how my symptoms are and what I’m doing to treat my Chiari and Syringomyelia, and then of course how important the month of September is to me.  The past three years have gone pretty quickly for me to be honest. I’m officially listed as STABLE for Chiari and Syringomyelia which I am incredibly grateful for!! In 2018 I spent a lot of my time at the Swedish Pain Clinic seeing a bunch of different specialists and I truly believe that is what jumpstarted me into being able to have a higher quality of life. I’ve had several rhizotomy procedures in my lumbar and cervical spine and some steroid injections in my cervical spine as well. In 2018 I also started seeing a neurologist every 3 months to track my symptoms and find a good balance of medications and as of February

I have not written a blog post since May 31st, and it is taking all of my energy and then some to write this one. September is Chiari Awareness Month, and it is year number two of me celebrating it, and while last year I was very enthusiastic about it, this year is different. I'm realizing how much of a grasp Chiari has on me, and how much I have been avoiding talking about how I feel mentally and physically, because I want to believe I am one of the ones who were able to beat it, but I am not. So, for this year, my Chiari awareness month will be dedicated to me facing my fear of putting all that I have been feeling this summer out there, to let everyone know what has been happening physically and mentally, and how I am using my realization of how sick I am to inspire the people around me. Life Changes: In July, I starting back as a permanent teacher at Elite School of Dance and couldn't be happier that I am still in the dance world. I always knew in my heart that no matter whe

As many of you already know, last Monday, May 1st, I had my three month post-op MRI scan and follow up with Dr. Litvack. Leading up to this appointment, I had so many emotions and I honestly thought my spinal cord would still have fluid in it with the amount of back and neck pain I was still having each day. When Dr. Litvack came in all cheery, I was so relieved. He pulled up my imaging from before my second surgery and the one from earlier that day. My spinal cord was clear and my cerebellum was in the correct place! I was worried that after the cerebral tonsils were taken out that my cerebellum would slump down, but now my brain looks like a normal brain (pic below) with extra room to spare! I still have a lot of irreversible brain and nerve damage, but nothing can get worse unless something weird happens. Dr. Litvack said he would be seeing me within 2-3 YEARS to check up on my lesion on my frontal lobe and to make sure nothing crazy is happening back there. My job is to track my sy

I cannot believe it has already been an entire year! I have been staring at this blank screen all day long, not knowing where to begin because so much has changed since this day a year ago sitting at Swedish Cherry Hill. I did some counting looking back at this year and here are some stats I have come up with: Surgeries: 3 Days at the hospital: 9 MRIs: 5, about to be 6 Massage Therapy appts: 19 Physical Therapy appts: 64 Before my diagnosis, I had never had an MRI before let alone a surgery or hospital stay. It was crazy how things flipped around so so quickly. On that rainy Monday in 2016, I had no idea how much this diagnosis and surgery(ies) would change my life. I didn't even realize that Chiari was a chronic condition until I became one of the 20% of people who don't get better/becomes worse after surgery. I remember my mom just dropping me off back at my dorm after a full day of meeting 3 different specialist and getting 7 viles of blood drawn and just carrying on with my