Meet Courtney. She is my beautiful friend. Courtney is 2 weeks post brain surgery.
Here is her story;
“I don't like the term "journey", something about it annoys me. So this isn't my journey, it's a story. One story of one part of my life.
When I was a teenager I started to experience pain. Weird pain, extreme pain for an otherwise healthy kid. Pain in my back, my joints, my head. Migraines & headaches like my head was going to explode at any minute.
I stopped liking sport, because it made everything hurt. I felt like everyone thought I was lazy & a sook. Kids teased me, teachers rolled their eyes at me. As I got older I just joked that I was lazy & didn't like getting sweaty & hot. Partly true, as my body's thermostat isn't great, once I'm hot it takes hours to cool down, being sweaty makes me feel like tearing my skin off. And I always end up in pain. My head feels like it's going to explode, the electric spidery pain that wends its way down my back & through my joints makes it not worth it. Getting puffed & working up a sweat made me feel like I was dying.
I've seen doctors, GPs, rheumatologists, pain specialists, physiotherapists, chiropractors, osteopaths, naturopaths, ayurvedic medicine practitioners, Chinese medicine practitioners, acupuncturists, massage therapists, reiki practitioners, psychologists, psychiatrists, even psychics! There are probably loads I've forgotten, but you name it, I've probably tried it. I must have spent tens of thousands of dollars over the past 20 years trying to figure it all out.
Usually the best I got was to be told I'm too young to be in so much pain (helpful!). To be "mindful" (I tell you what, If I never hear the term "mindfulness" ever again it would be too soon). To go for a walk, yes, a walk (when my pain was so bad I could barely move, while I was trying to care for my two children, one of whom was a baby & needed carrying & breastfeeding around the clock), to try panadol- if I asked for pain relief stronger than this (because panadol does literally nothing for chronic pain), I felt like they thought I was a drug addict. I got diagnosed with fibromyalgia in 2017 - the diagnosis I feel is slapped on people (particularly women), when no one else knows what to do with you. There's no real treatments or medications. You just have to live in pain. Once you have a diagnosis, no one looks for any other possible root cause to the pain because they've got a fun box to put you in.
Since having my second baby in April 2017, my pain has sky rocketed. I had both of my babies at home without pain relief. I didn't even take a panadol throughout my pregnancies. I hate putting medications into my body. I know my body is strong & capable, I birthed a 9 pound baby at home Goddamit! I'm not weak, my pain threshold isn't low.
My pain was REAL.
This year (2019) my pain had been unbearable. I had given up going to the doctor because it was always the same, I felt shame that I wasn't strong enough. Shame that I needed to ask for medications to control the pain. I felt weak & defeated & confused as to why my body was hurting 24/7. I wanted to play with my kids, go out with my friends & just enjoy myself. But the fatigue that comes from living with 24/7 pain has stopped me from living the life I want to live. It has impacted my quality of life extremely. I'm only 34 & was starting to feel terrified about what it would look like once I was 54, 64, 74. How would I function then if I could barely function now? What would mine & my husband's retirement years look like? Would I be dragging my whole family down with this body that was always hurting?
The level & extent of my pain little sense. I am a healthy person. I eat a plant based vegetarian diet, I move my body a lot (running after a very fast 2 year old means I'm quite fit, an averange size 10-12 woman) I don't smoke, I drink maybe once a month if that, I go to bed at 9.30pm & get up at 6.30am. The most indulgent thing I do is have a coffee or two a day.
Why was I struggling to get through each day?
In June 2019 the pain in my back was so bad I felt like I was being electrocuted, I felt like I would throw up & thought I was going to lose consciousness. I almost went to the emergency room, but my previous decades worth of experiences with the medical profession left me not wanting to risk waiting hours in the ER only to be dismissed & sent home with no pain relief & just added fatigue from waiting for hours to be seen. I tried a physio again. I sobbed when she barely touched me. My pain was a 10/10. I could barely think or speak. She knew something wasn't right.
She took my pain seriously.
She sent me for an MRI thinking I must have disc prolapses & nerve damage. The MRI came back. I took the report to the a GP thinking I would get some muscle relaxants & pain killers, have weeks worth of expensive physio then get back down to living with my 6-7/10 average pain score every day.
The GP read the MRI report. He said "your discs are a bit degenerated for someone your age & a bit dehydrated. But that's not the main problem." Okay I'm thinking, he's going to dismiss me & send me on my way with no further investigations or care. "No," he said "You have a Chiari Hindbrain Malformation". A what? "You've had it since birth, if you'd ever had an MRI done on your head, brain or neck it would have been found". He sent a referral to a neurosurgeon - you know, the people who OPERATE on your BRAIN.
I staggered out of the office & promptly burst into tears as I paid for the appointment. I got into my car, tearfully messaging friends & family & googling this condition I'd never ever heard of. It explained so so much.
Chiari is a condition where my cerebellar tonsils (yes our brains have tonsils!!) descend into my spinal column where only my spinal cord should be. This blocks the normal flow of cerebrospinal fluid around my brain & down my spine. This means that simple things like coughing, sneezing, blowing my nose, laughing & most exercise meant it felt like my brain was going to explode...because it was kind of trying to, there was nowhere for the build up of spinal fluid to go.
After researching the condition & neurosurgeons in Perth, I asked for a referral to a surgeon who had special training in Chiari & my surgery was booked for the 14th August.
When I met with the surgeon, he asked me "why has no one ever sent you for an MRI when you've had pain for so long ??" No one ever took my pain seriously enough, I told him. "Why?" He asked "you're not a crazy person! This is real! Your pain is REAL" and I almost burst into tears then & there. It was real. I'm not crazy. It's not all in my head (well I guess it kind of was, being my brain & all! But I sure as shit wasn't imagining it!) I'm not weak or pathetic. There was a reason. A very big, genuine reason. My cerebellar tonsils were growing into my spinal column where only my spinal cord should be, blocking the flow of cerebrospinal fluid & causing me untold pain.
I was scared about the surgery. It meant cutting into my head, removing part of my skull & C1 vertebra, shrinking the tonsils (of my BRAIN) down with heat, using a big piece of fascia from my thigh to help close over the hole in my dura (the part that covers your brain) & closing it all up with 20 staples. It meant up to a week in hospital away from my beautiful children (who I've never spent more than 1 or 2 nights away from), time away from my still breastfeeding toddler. My husband having to take leave for up to 6 weeks for me to recover. Not knowing if there would be any secondary problems arising from the surgery. But I had to do it. I had to try. I finally had an answer to the pain, the symptoms had been getting worse. It couldn't wait. I had to try.
The thing with chiari is that pregnancy & childbirth can make it much worse. The pressure of growing a baby then the extreme pressure of pushing them out (particularly a very large one with a very large deflexed head) can make the chiari symptoms worse. My symptoms had gone from very bad to unbearable. And there was a reason why! Many women with this condition will have a general anaesthetic caesarean birth so as not to risk putting more pressure on their brain by pushing. But I had no idea I had this condition, so I chose the birth I felt best suited my needs at the time (no regrets by the way!)
I am now two weeks post surgery. Many of my symptoms have already eased. I am still in some pain from the surgery & predominantly stuck in bed.
The surgery went well, but I had allergic reactions to some the painkillers & other medications they give you in hospital. I wasn't listened to in hospital by many of the staff (not a shock after being dismissed by medical practitioners for over half my life) & wasn't given sufficient or appropriate pain medications in hospital which I feel delayed my recovery some. But I'm home & I'm getting there. My toddler didn't wean! My 8 year old has been a pillar of strength. My husband is amazing, I would not be where I am without his unwavering support, his willingness to make it doable so we could pay for this operation, his love for me & his capacity fill my shoes as the primary parent while I recover. My own parents & sister have been with us every step of the way, helping with the kids, liaising with hospital staff to get my medications under control (the blessing of having a sister who is a nurse!)
Friends & extended family have been outstanding. Those near & far have sent their love, food, care packages & tireless support. Our school community has provided us with meals every day since my operation & the support we feel is humbling & tear jerking!
I'm hoping my quality of life will improve once I'm fully recovered. That I can be an even more fun person, wife, mother & friend to those around me. That I will feel happier in my own skin when I'm not constantly fighting a pain battle within my own self.
I have some kickass scars & I wear them with pride.
My pain was real. I never gave up on trying to investigate it. I knew it wasn't as easy as what the doctors kept saying. I knew in my heart there was something else there. I was terrified that one day it would turn out to be cancer or some horrible incurable disease that would take me from my husband & children. I'm grateful it was chiari. I'm grateful there is a treatment & I have a chance at a happier, less painful future” - Courtney