So lets start with the back story; ten-ish years ago I started feeling the symptoms of my recent diagnosis, numbness of the whole left side of my body. Yes, my face, arms, hands, stomach, and legs. If I was 2-d and you folded me in half, it’s literally the whole left side of me that went “numb.” I put numb in quotation marks because I have gotten used to the feeling of it and wouldn’t necessarily call it numb, but rather loss of sensitivity… 10 years ago I didn’t know anything about the condition that I have. Another effect and sign of my condition was my constant headaches and scoliosis. When I first went numb, I honestly didn’t think anything about it and though it would go away. A couple of weeks with the loss of sensitivity I told my parents that I was having a difficult time feeling things with my left hand, and I felt so much weaker on my left side than my right. We saw a doctor, did a couple of reflex tests and everything was fine. At this point I hadn’t known about my scoliosis either, the numbness was the only sign at this point. Fast-forward a couple years, I was in 7th grade, still had the numbness and then we did a scoliosis test in P.E. After finding out I did have scoliosis, we saw a chiropractor and told him about my symptoms and we did a couple x-rays. No sign of my medical condition showed up on the x rays other than my 27-degree curvature in my spine, which isn’t major, but significant. Did a couple sessions with this chiro and then stopped doing anything regarding my symptoms all together. I left my symptoms alone for several years and just grew used to the feeling, or lack there of.
In high school I experienced the worst headaches but never really thought of them as migraines even though they’d last up to 3 days at a time. I again, didn’t think anything of it and went along with everything. During this time, my family and I went to see a doctor in Mexico regarding my symptoms and I did another reflex test and everything was normal. I was told I was lacking some vitamins but that was it. I still didn’t know what the root cause of my numbness was, and once again, let it go unmentioned for several more years.
At the beginning of 2017 I finally wanted to get to the root cause of my numbness and wouldn’t stop until we found out what in the world it was. I saw my primary care physician and told him alllll the things I could think of that were potentially linked together. The numbness, scoliosis, headaches, and sciatic pain. This is when my first MRI was ordered and I did several blood tests, etc. The process for getting an MRI approved took a while, but a couple months later I was finally going to get an MRI of my low back.
This MRI comes in and all we see is my curvature, nothing serious, so my doctor missed his mark on this one. He had thought it had something to do in my spine, possibly a pinched nerve or a disconnection. When nothing significant came back, he put me in contact with a Neuroscientist at Stanford Healthcare. My Dr. at Stanford told me to get a couple more MRI’s like mid back and neck. All these take time to order and approve and to study so a couple months later I was finally going to discuss results with my Stanford Dr.
I had been getting my imaging done somewhere else and not at the Stanford Healthcare facilities so there were some discrepancies in the studies found. In the first imaging done at an independent imaging center, they discovered a “mass” in my neck. Obviously, my first reaction was to freak out. How could I have a mass? What is it? What does this mean? How can I get rid of it? SO MANY questions popped up in my brain. My Stanford Dr. wanted me to get a couple scans redone at the nicer facility at Stanford Healthcare, they had better MRI machines and way better technology (in my opinion of course).
After the MRI from Stanford came back we finally had an answer to the issue!!! We took imaging of my neck and upper back and with/without contrast (some injection to make things appear more clearly in scans) and my Dr. saw the issue. I was diagnosed last December with an Arnold Chiari Malformation, Type 2.
I had never heard of this before I was diagnosed with it, and even after being diagnosed, it was very difficult to understand. I am in no means a brain surgeon but from my understanding of the conversations I’d had with my Stanford Dr. it’s very serious BUT treatable through surgery.
If you read this link it provides some great insight on what my condition is, in medical terms. In everyday English is as follows; So the opening at the base of our skulls is supposed to be empty in order for our cerebral fluid to freely flow through our spinal cord and back up to the brain. The opening at the base of my skull is smaller than it should be, causing a part of my brain the “tonsils of the brain”; 11mm to be exact; to be falling inside of my spinal cord. This blocks the flow of the cerebral fluid and causes my spinal cord to be flooded with cerebral fluid. In my MRI you can clearly see my spinal cord to appear very clearly and its filled in white. MRI images don’t pick up images of the spinal cord at all, mine is that swollen. You can also clearly see the part of the brain thats falling into that small space.
The surgery for treating Arnold Chiari is called the Arnold Chiari Decompression Surgery. I could go into details but it still makes me shiver at the thought of it. Check out a detailed article of the surgery here. My decompression surgery is in mid April and right now I ask for all of your prayers and all of your well wishes that the surgery will go well and I’m on the quick road to recovery. Although the Dr. can’t guarantee 100% that I’ll get the sensation in my left side back, there’s a good chance.
Got any questions for me? Feel free to comment or send me a message!
p.s. sorry for this really abrupt post! I felt like sharing all I’ve been through lately.
Thank you for sharing your story with us. Remember you are a bright star who has impacted my life. I will be praying for you. I am confident you will be okay. Stay strong and be of good courage.
Lots of love and support
I acknowledge you for being open and sharing your life with us so authentically! You are strong, got lots of creativity and talent to share in this world. You are in my prayers and sending healing light your way.
Clarita! I’ll be praying for you, your recovery, and your family! My mom and I are always talking about how far you’ve come and how proud we are of your progress! I’m looking forward to seeing more of your posts and keeping up with your recovery! Sending much love from me and my mom!