I had weird symptoms before the excruciating pain came. Some strange unknown fainting, fatigue, brain fog, dizziness, and then the pain started a year or so later. The first specialist I saw sent me for a scan, and told me they found Chiari. I remember thinking at the time,
“Great! At least we know what it is! We can just treat it.”
I read a lot about it. It seemed to be something that created a collection of symptoms, varied from person to person, and that surgery was the only way to treat, but not cure it.
I got myself educated, and understanding and I just expected that this would be a pretty quick thing since we knew what it was.
Except nobody would connect correlate that my erratic symptoms could possibly be coming from this 7mm problem at the base of my brain. It seemed that surgery wasn’t really an option, and I apparently needed to be much ‘worse’ to have it. So I thought my experience wasn’t bad enough. And maybe for a while, it wasn’t that bad. It seemed horrendous to me, but nobody else agreed.
So for most of this journey, as you can imagine, I have tousled with DOUBT. If 10 different health professionals say that it’s not the Chiari, then maybe it isn’t? We are supposed to trust them, right?
I would go to appointments, hopeful for an answer or relief. I’d be sure that this time I would be believed, acknowledged, and realise that it’s not something else, it’s the Chiari. So let’s do the surgery. But almost every time, I’d leave crying, feeling unsupported, and like I should just be able to fix it myself. Like I’m not bad enough, or good enough, and like I haven’t tried enough. My treating doctors and specialists inadvertently (and sometimes clearly) communicated to me that I should just suck it up and get on with life. So that’s what I’ve been doing for the better part of the last 5 years. With the feeling of Edward Scissorhands removing my head, all day long.
I doubted my instincts. I doubted what my gut had been telling me for the whole time.
Consequently I’ve participated in many therapies, including countless scans, acupuncture, physio, chiropractic, osteo, spiritual healing, cupping, cannabis, opoids, antidepressants, to try and improve my life and alleviate the pain. The biggest thing I think, is the psychology. I do believe there is a mind/body connection that medicine can’t explain. And we have some power to improve the state of things. I did manage to make peace with the pain, sometimes even count it as a blessing that has built such a resilience in me.
But after 5 years of trying, I’ve realised, I ACTUALLY CAN’T CHANGE THE SHAPE OF MY BRAIN.
All my doubt has become certainty. At this point, after more than 5 years of trying Every. Thing. Under. The. Sun. I can confidently say, I could not have been any more thorough in investigating other potential conditions. I could not have tried any harder to retrain my brain away from pain. I literally just this week had a 7th appointment at the public hospital neurosurgery clinic, and finally they are willing to undertake the decompression procedure.
All the positive thinking and diverting neurons cannot change a structural defect.
I just want you to remember, if you’re in a scenario like this, stop and be quiet on a regular basis, to see what your body is telling you. Doubt will harass you, but try to trust your instincts, and relentlessly keep knocking on every door until you feel satisfied al the options are exhausted.
Make peace, but don’t stop fighting.