It’s All In My Head
My Post Brain Surgery Notes
On the process of slowing down, listening to my body and discovering a major neurological malformation
The past half year has been the scariest of my life. Having a problem with my brain is terrifying. It’s something I can’t see. The brain controls all of the important systems that keep us alive and control all of our senses. To start to lose control of your basic functions that your body regulates without you even knowing is an incomprehensible experience to those who are in good health. I didn’t even know about the congenital condition I was diagnosed with at 25- I had never even heard of it and neither had anyone I talked to after my diagnosis. I am so grateful to technology for connecting me with people who did have the same condition. With their support and friendship, I didn’t feel so alone or confused. I am now starting to share my story little by little. It would be easier to just move on and forget this ever happened, but that won’t help another seemingly healthy, normal person who is diagnosed with this scary condition. Post surgery, I want to share my story to give hope to others who feel as lost and hopeless as I did. This is just one tiny piece of my story- how I discovered this condition.
This part may not seem relevant- but I assure you it is. Almost everyone I have talked to with my brain “disorder” has an eerily similar personality and history- as if we have overcompensated for our health by never letting ourselves slow down and observe how we feel on a physical level. It’s like our brain told us to push push push, to keep working harder, that our relentless pursuits will help us ignore the anatomical pressure of our skulls pushing down on our brains. I tell this part because everyone with my “disease” reaches the point where they can’t keep pretending they are OK anymore- their body just won’t let them keep going at that speed. Everyone has gone through a similar process of letting go, one part of our well-rounded, normal lives at a time, and ultimately learning about the root cause, the brain malformation. None of us ever think that we are candidates for a neurological disorder. But in the end, we are shocked at how much we have been able to achieve despite the anatomical challenges going on inside our heads.
I was never one to slow down- I kept my days packed as much as humanly possible. Even in my down time I felt a compulsory obsession to be productive and rushed to a yoga/pilates class or attended a networking event. I was someone you could describe as high energy, driven, determined, motivated, passionate. I never really had anything seriously painful happen to me- whatever I wanted, I manifested. I focused on the good, the positive, and made things happen. I prayed and felt grateful for everything in my life and the good fortune that I felt I didn’t deserved- I didn’t have control over being born in this country. After college, instead of taking the top job that I was recruited to at a management consulting firm with a padded salary, I went off to grad school in Spain. I worked in Paris for a French company in marketing afterwards, and had amazing relationships and fun weekends around Europe. I was thrilled by the challenges of living abroad and insatiably learned the language and cultural history. I loved working for a European multinational so much that I doubted all the negative things I heard about American corporate life — the greed, the long hours, the hierarchy, the stress- could be true. For my next challenge I came back to the states to take that job.
I became quite depressed- I didn’t realize that depression was my body’s way of saying something was seriously wrong. I just figured that traveling to mid-America every week was a far cry from all the amazing lifestyle stereotypes I had lived out in Europe with my international friends, so who wouldn’t feel like crap all the time? Depression couldn’t really affect me, right? As someone would never let something like depression get in the way of my ultimate life goals (heh), I found my dream job locally, in San Francisco.
Ultimately I had everything I wanted- a challenging career I was passionate about, surrounded by brilliant friends and inspiration, living in a gorgeous city. I was healthy, passionate, pretty, young, and with a long, promising career ahead of me. I had a loving family and a supportive boyfriend. I still felt that depression. I felt it was the beginning of something serious. I was right.
Then the weirdest things started happening to me. Stabbing, sharp back and neck pain, dizziness, disorientation, confusion.
I knew that returning to Europe to my formerly happy, exciting life wouldn’t be the answer, as I had created a different but equally fulfilling life in San Francisco. I sensed that something deeper was going on, but I had no idea at the time what it was.
One unnecessary obligation at a time, I released myself from the responsibility of anything that was not of utmost importance to my life. It was a slow process of letting go. First to go was my social life. I lost friendships that had once been meaningful to me- because I simply had no desire to go out. I thought this was a sign of depression, but soon realized that there was more than a lack of willpower to be social- it was an inability to muster up any energy. If I tried to go somewhere, I found feel a weakness in my body, dizziness, a sense of disorientation, and headaches — even before I took a sip of alcohol! I was so worried by my constant headaches that I completely gave up drinking even a drop of alcohol (and still don’t drink to this day, despite my affinity for red wine and IPAs). I had no idea why I had such throbbing headaches on a regular basis- I needed to eliminate anything that would alter my natural state.
Regardless of my natural, healthy, yogic lifestyle, I still felt these weird symptoms creeping on- including a complete lack of strength in my hands. I started feeling like I would topple over when I walked. I ran into door frames and accidentally brushed into people walking down the street. My dizziness and headaches got to a point where I had to lay down or I felt that my head would actually spontaneously combust. I dropped coffee mugs when my hands couldn’t grip onto anything anymore- they would just suddenly go weak on me. Sometimes I couldn’t feel them at all for hours at a time.
I went from feeling that I “had it all”, or whatever I had grown up to believe constituted as having it made, to having no control over my health- something I had always taken for granted. It was getting progressively worse. That wasn’t how it was supposed to happen! People don’t have health problems for at least another few decades. Why did I feel like I was an elderly old lady with constant back pain and crippling headaches?
When I lost control of my hands (muscle weakness) for longer periods of time and I started to see double after toughening through work, pushing through my pain (as I felt I had no option but to do- no pain no gain, they say?), I knew this was not good. People see double when they’re wasted, and with my totally healthy lifestyle- no social life, getting a minimum of 8 hours of sleep a night, eating organic nourishing foods, no alcohol (or any harmful substances, for that matter)- there was no explanation for all of these symptoms. Looking back with the knowledge about my condition that I have now, I realize that there were more signs. I had developed an intense disliking for loud noises, sensitivity to light, and a preference to not be in large crowds. But all of these signs, even the depression and anxiety, were things I could rationalize as being a normal part of the human experience. Everything isolated without the full picture seemed like I was just overreacting and making up that I felt like I could collapse at any moment. The trigger for me were the symptoms that I couldn’t rationalize anymore- problems walking (?!) and inability to feel my hands. I knew I had to get help.
I went to specialist health clinics to try to get my back pain under control. I met with the owners of a world-renowned scoliosis clinic to see if they could help me, thinking that a worsening scoliosis was causing this. After completing questionnaires for hours and undergoing a neurological exam, I didn’t know why they wanted to give me an MRI and couldn’t start treating me right away. Why couldn’t they just start fixing my scoliosis like all the other girls with back problems?
I was in denial that my MRI would turn up anything. It had to be just some sort of muscle tear from a car accident I had back in March of that year. Maybe it was really bad whiplash.
I was diagnosed with a Chiari Malformation type 1. Malformation? What the hell? I was considered a “gifted”, even “talented” child and was always considered extremely bright. Yes, ever since leaving Paris I had been struggling with explainable anxiety and depression- but who doesn’t suffer from that in their twenties, right? Isn’t my entire generation strung out by all the demands, the economy, the pressure to have an even better life than our successful parents’ already charmed lives? I didn’t think this could be related to that fact that my brain was ACTUALLY under a lot of pressure. As in, my brain was not surrounded by the normal cerebral spinal fluids that normal people’s brains were. My brain was a cork on my spine- literally blocking the flow of those crucial cerebral spinal fluids to cushion my brain. Hence all of my nerves were being ACTUALLY being pushed upon by my brain.
Now that I am post brain surgery, I wanted to share how challenging it was to receive a proper diagnosis with a serious congenital neurological disorder within a period of a few months. It took all the courage I could muster to stand up for myself with something that is not visible to anybody else. It was also isolating- I barely had energy to put into a couple of friendships. The people who I told about this were supportive, but I had this huge sense of guilt that I was complaining and felt really bad about feeling…really bad. My hope is to inspire anyone who feels like it’s all in their head. Because really, it WAS all in my head. From the outside, I looked totally fine- more than fine. Everyone said I was fine. But I kept listening to my body that was telling me that something was really wrong. I had many days that I ignored my body and tried to keep pushing through, thinking I had somehow lost it and become a little crazy.
I knew deep down that I was not losing it, so I had to stand up for myself in modern Western healthcare system because no one else would. My evaluations by my San Francisco doctor were that I was fine- my lab reports came back great, and I was instructed to just take some muscle relaxers for the muscle spasms and stabbing pain in my back.
I had to go in again and cry out that something was really wrong. I was sent to the spine specialist, another prestigious MD. My spine doc mostly saw people with injuries/disc problems. A logical human would have deemed that a spine doctor would know enough to tell if anything was really wrong. This specialist sent me to physical therapy, which made my pain even worse. OR maybe, looking back, my condition was simply progressively rapidly. Without having a good reason why, I knew I had to see someone who dedicated their medical career to only people with scoliosis (a condition I was diagnosed with as a young girl).
At the scoliosis center, it was all out of pocket. I had already spent all of my savings on weekly massages, Schroth method (PT for scoliosis) acupuncture, counselors, yoga, all the alternative therapies I possible could find in Northern California to try to find pain relief. Nothing lasted more than a few hours. Somehow, I kept listening to my intuition despite all logic. Western doctors and alternative healers alike all told me I was fine.
Once I had the MRI, I brought the results to the spine doctor in San Francisco, upon my mother’s insistence that a doctor would know more than the chiropractors who had ordered my MRIs. Spine doc insisted my MRIs looked great. Ok, phew. No rush to drive the 3 hours down to the scoliosis center. But for some reason (looking back, I feel that it was the Divine sending me), I went back to these people to see what they had to say- I trusted them since they had done more thorough questioning and screening than any health care professional I had ever seen.
They told me I had a Chiari Malformation Type 1 and that the only real treatment was neurosurgery. They proposed a long series of chiropractic adjustments over a course of 3 months if I wasn’t ready for surgery yet. This place was far away and my pain was so crippling that I couldn’t bare the thought of driving to these people twice a week for 3 months.
Then came the online research into my condition. I found a book on Chiari Malformation called “Conquer Chiari”. After reading it, I knew I had to see a neurosurgeon if I wanted to take this diagnosis seriously. And serious I knew this was, given my symptoms were not something a 25 year old girl should be experiencing and progressed to the point where I could only realistically work for a few hours a week. Through this research process, the experience of living in my own body was worsening. My headaches, dizziness, and all the pain were now making it nearly impossible to get out of bed. When I did, everything got worse. Trying to work from home- something I once thought was a solution- proved to be impossible. Staring at a screen made everything way worse.
It would be too much to explain how I eventually scored an appointment with the head of neurosurgery at Stanford University. I was referred to neurologists, but from my research (the Conquer Chiari book and the internet), I knew I wanted to see someone who routinely performed Chiari Malformation decompression, the surgery I had to undergo. I ultimately achieved this goal after applying the same sense of determination I had previously applied in my career.
When I met with the head of Neuro at Stanford, he recommended immediate decompression surgery upon glancing at my MRI. It was a complete shock. Even though I had known that things were getting weird in my life, I didn’t think it would be recommended to me to cut open my head and get rid of part of my skull. I don’t know what I thought the answer would ultimately be, I guess I was waiting for someone to tell me I had literally lost my mind. I didn’t think a world-renowned brain surgery would be cutting me open and fixing things. I know people are not as lucky and have to suffer symptoms of chronic illness their entire lives and this fills me with sadness and empathy.
On December 2, 2014, I had a suboccipital decompression and C1 laminectomy. The former is when they cut into the back of my skull and remove part of the skull bone to make more room for my brain, which didn’t have enough room. That was causing the brain to sink into my spinal cord, and put pressure on all my nerves and block the flow of that crucial CSF. The later was the removal of the top piece of my spine, again, to take some of the pressure of my brain. Fun fact: I now have a flexible piece of a pig in my head now in place of the hard, inflexible skull bone that was removed.
I find it ironic that I’ve always put so much pressure on myself and here I am, having brain surgery to release all of this pressure on my brain- literally. I am blessed that I found this condition relatively quickly, as it can have permanent effects if left untreated. Most Chiarians suffer for many years and are misdiagnosed with other conditions (like migraines).
I wrote the part about Europe and my career because I thought it could be contributing to some sort of traumatic culture shock PTSD/quarter life crisis, the stress of which was making me go insane. I really thought about moving all the time to see if my symptoms would magically go away. From conversations with other people with Chiari, this is something people go through. We think it’s just something we’ve just fabricated because of X. The author of Conquer Chiari described the sensation of his headaches as if someone were squeezing his brain with a tightly grasped fist. I remember thinking- “you’ve got to be kidding me! That’s how I feel with every headache I get!” The good news: the clench of that fist squeezed around my brain has been released.
So, here I am, 7 weeks after my brain surgery. I am re-calibrating. I have no idea what my next move will be, but somehow, that’s OK. My relationship with God has become stronger than it has been in years. I kind of put that on the back burner when everything was going the way I wanted it to. In yoga, I learned that I manifest things for myself, which really goes hand in hand with my former lifestyle. God can take it all away in an instant. Our time here is pretty brief and we have no control over when we will die, despite Silicon Valley’s insistence on proving otherwise. God was totally looking out for me and giving me this energy- this grace- to get through it all and somehow got it through to me to keep searching for this root cause of my suffering, for truth. I also had this incredible strength through it all that I cannot attribute to anything other than God.
I feel relatively fantastic now, post surgery, and my pain is gone. I still have to take it easy and have certain things that I will never do (I will not become a head butter on a soccer team or turn into a body builder). I’m OK with that, because there are so many amazing things I CAN do, things that I love and cannot wait to do with my decompressed brain. I have no idea what the future holds for me, but I have this little feeling that God is going to lead me in the right direction and be there with me, no matter how painful or crazy the journey is.
Note: My apologies for the poor writing-I still have some brain fog post surgery.
To join my Bay Area, CA support group for the “American Syringomyelia and Chiari Alliance Project”, E-Mail bay_area_support@asap.org. Even if you’re not in the Bay Area, feel free to reach out.
I am currently recovering at my parents’ home in Northern Virginia indefinitely. Visit www.asap.org to find other local support groups.
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