Life with Chiari & Syringomyelia

 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 Febru...

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...

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...

It has been quite a while since I have decided to write about my health. I guess I am just in denial of it all. More has changed since just the middle of December, and I feel like I just haven't been able to really reflect and focus on what is actually happening. My day on December 29th started really early at the Swedish Pain Clinic. [Oh yeah, side note I am now being treated at the pain clinic THANK GOODNESS. I had some trigger point therapy done on the thoracic area of my back and my doc Dr. Yu recommended facet blocks (rhizotomy) at my C2, C3, and C4 vertebrae in my neck. I had to have two diagnostic testings before he would actually burn and kill off my nerve endings temporarily.] I checked in and went through with my second diagnostic testing which includes 6 much too long needles going into my spine... super fun. After that I had my neurosurgeon appointment to talk about findings from my continuation of MRIs to check up on my syrinx. I wasn't expecting him to say anythin...

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...

A big hello to all of my followers and a big thank you for being so patient... This is probably the longest I've waited to give an update, but I have had one hell of a month. Side note: One of the best things that have happened this month was the article from South Sound Talk on me. I have the link below :) it follows my story: my diagnosis and how I doing now. So check it out! http://www.southsoundtalk.com/2016/09/08/dancers-focus-remains-on-pointe-through-brain-surgery/ Alrighty, time to get to the real stuff.. Earlier this month or even this week (Chiari brain fog guys am I right?) Any who.. We were talking and we talked about how we hear all of these success stories, but they never or barely touch on the hard times, because people want to hear about the good with success stories. Totally understandable. However I feel like that's why I failed and failed over and over again to post anything, because it truly didn't feel like any good was happening in my day-to-day life. ...

Hello my fellow followers! WELCOME TO CHIARI AWARENESS MONTH!!!! It's really fitting since I spent most of my day at Swedish getting MRIs and seeing my surgeon for follow ups. Everything is looking pretty good. It's weird to see such a big chunk of my skull and spine just gone. I do have some scar tissue building up, as to be expected, but with more physical and massage therapy it should get better. (MRI images from before and after surgery are below). This is a really important update for me to be posting for many reasons. As I am writing this, I am sitting on the 20th floor of my beautiful dorm building looking over the skyline of Seattle thinking about how there was a much bigger chance of me not coming back for this school year. I am extremely hard on myself, and it has been a seriously rough journey to get to where I am right now. Classes start back up this coming Tuesday and the only thing I can think about is how I don't want to make a fool out of myself. I was telli...

My title for this post honestly speaks for itself... I have shocked myself with how well I am handling everything and for how far I have come in only almost four months. This update will be short and random mainly because a lot of little things have happened along the way. First off, I got a tattoo! It's small, but I love it. Purple ribbon with my diagnosis date and it couldn't be more perfect :) On Sunday I move back up to Seattle to start my semester at Cornish and I honestly thought I wouldn't be able to make it back. Yes I am having an alternate schedule, but I will be in the environment that I love so much and that's all that matters. I beat the odds because of my determination. Since I'm moving back soon, I have looked back at my past summer, of which I don't remember most of, and am shocked. It's almost impossible for me to think about where I was at in May to where I am now. I am honestly a completely different person. I have always had a huge work e...

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...

Safe to say that it has been a while since I wrote. Many things have changed and improved, but a lot is still the same. On June 30th I had my check up with my neurosurgeon to see how I was doing. They weren't pleased with my lack of movement in my upper body and neck, so I am now in physical therapy and massage therapy. I am also now on gabapentin which is a nerve pain medication to help with my sharp throbbing pains coming from my scar and going to the front of my head. So far all of those things combined seem to be working, but I know I still have a long ways to go, especially with Cornish only being less than six weeks away. Six weeks. That's six weeks to get as close as I can to where I was before things became bad. Six weeks to prove to myself that this has all been worth it. Many people I've talked to keep thinking that surgery was a cure for my Chiari..   Chiari Malformation is not curable.  I'm getting to the point in my recovery when I start to figure out what ...

Well sorry everyone for never getting around to writing my 5 week update. There was so much on my mind and I knew I should have written all of my thoughts down, but it just never happened. It's safe to say I've been struggling a lot with the mentality of my life situation. I never really knew how much Chiari would effect my daily life until now. It's crazy to think I lived 3 years with symptoms to have it all turn out to be some rare brain thing. Just my luck! I have been nothing but positive throughout this whole endeavor which has helped immensely. I was talking to a parent of a dancer at my old studio backstage and she asked me two questions: Will I go back to Cornish and will I be able to dance again. When I replied saying that I don't know and that it's all up in the air, she felt very bad and apologized for asking those questions...but she asked the questions that are on everyone's mind and heart and the ones I tried to burry deep deep down. I have been do...

I can't believe it's been just about a month since I've had my surgery! It feels like time has gone by so dang slow, but if I reflect on my journey, time has gone by relatively quick. I have been making some pretty good strides. We are successfully weaning me down off my narcotics. I got rid of my 3:15am dose, I only take a muscle relaxer at 12:15am, and during the day my dose of oxy has decreased from 3 to 2 tablets and I every other dose I only take 1 tablet. I'm hoping that this week I will get down to only taking 1 oxy and then if that works, the following week I could take an oxy only if I don't take a muscle relaxer. That's my hope at least! Lately I have been thinking about how being diagnosed with Chiari is permanently changing my life. Before surgery I was just mainly focused on the fact that I was having a major operation done and honestly I was just trying to get through the rest of the semester at Cornish in one piece. After surgery for the past thre...

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...

Well hello everyone. Most of you guys have an idea of the things I have been going through the last  five days or so via the quick Facebook updates my mom and I do here and there, but in this post I'll go more in depth about what was happening and into my personal thoughts throughout this experience of recovery thus far. I left off with it being Friday and me going out to Oliver's adoption. It was so important to me that I went to it, but it wasn't the best idea for me. I was in a lot of pain the whole rest of the day and it wasn't being able to be controlled well. Saturday was a bunch of the same deal. Suffering with intense head and neck tightness with the sharp surges of pain throughout the muscles that were effected by the incision. I went to bed Saturday night with the hope that Sunday would be a much better day, but Sunday was ten times worse. The sharp surges were never ending and I was unable to relax and breathe through them since the pains were so piercing. I ...

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...

Wowzers. It's officially the day before surgery. I thought this day would never come. It sure has been a rough and busy 10 days since I've last written! I officially moved out of my dorm this past Wednesday. That Wednesday I also woke up with a nasty cold (SOS!!!). Wednesday was of course the 5 day mark meaning I wasn't able to take most medicines... So here I am 5 days before surgery having to battle a lovely cold in time for surgery with no medicine...eek! Luckily on Thursday my mom found a few meds I could take, so that plus sinus rinses have been helping. It didn't really hit me that surgery was so close until I realized I was actually finished with my freshman year and that I was at home for four months. I quickly realized that this surgery was all too real. Yesterday we started preparations as a family. My parents cleaned the house, I started using this cream to prevent infections, and we packed hospital bags. Swedish sent me a 20 minute video presentation about a...

Well it is safe to say that today and yesterday have thoroughly kicked my butt. I woke up yesterday with a decent amount of energy and it was great! Around 3pm however I went downhill. Everything became still, especially up and down my entire spine. My eyes became extra sensitive to any light, I was incredibly nauseous, my head was pounding, and when I stood up it felt as if I would fall over at any second. It actually scared me. I had never felt this bad in my entire life. Chiari was definitely winning. That night things just continued to get worse. I fell asleep around 9:30pm (YAY) but didn't stay asleep for long. I proceeded to then wake up at 11pm, 1:30am, 2am, 3:30am, 5:30am and then 8:30am... The pain was awful and I couldn't stop crying all night. I read that a lot of Chiari patients have a hard time when weather changes, particularly when it gets hot. Well, combine that with a hot Seattle day, a hot dorm room, and an even hotter and stuffier bottom bunk and I was screwe...

This weekend I was able to go home and spend some quality time with my family. It is honestly very hard going through all of these medical struggles and being away from your biggest support system. However I feel rejuvenated and ready to take on this next week. Earlier today I went on a hike. It was a hike I had been on many times before. It's about two miles all uphill and then two miles back downhill. It took me twice as long to complete the hike than it normally does and that's when I really realized how much my Chiari is effecting my life. I'm a person that tends to just work through things and not even notice how it is truly making me feel. Ever since my diagnosis, I've been consciously more aware of my symptoms, what is normal and not normal. I realized that I actually have a consistent pressure within my skull. I thought that was normal, and I guess it is normal on Chiari standards. Back to the hike.. I love hiking. There's just something about the satisfacti...

Hello everyone! I just want to start out this blog by saying how much this blog means to me. After I was diagnosed with CM, I of course wanted to know more information about this condition so I turned to google. WebMD was extremely great with giving me medical information and statistics, but I wanted to know stories of real people who have suffered or are suffering just like I am. I started reading a bunch of blogs regarding Chiari and I loved how personal it was. It helped me wrap my head around what was going on, and that everything I was feeling emotionally and physically was completely normal. So that's when I decided to create my own blog, to record my own story, because every story is different and unique. & here we are :) I can't recall when symptoms first started, but I do remember complaining of consistent head rushes (or head surges as I like to call them) since September of 2015, even though I consciously know that they were happening before this. At this point, ...