#this means that i have problems with my cerebellum. i could have chiari malformation like [relative] did. what if i need brain surgery-

[phosphorus-noodles]

the downside about being so well informed about so many medical issues is that it makes it 10x easier for me to self diagnose myself and overanalyze everything forever

[sayreambrosio]

September is Chiari Malformation Awareness Month

Late in 2018 I went in for an MRI to rule out MS. That MRI came back with no lesions, but it did confirm what my doctor suspected; Chiari Malformation Type I. I had no clue what that was. It freaked me out. I was scared.

What is Chiari Malformation?

A Chiari malformation is a problem in which a part of the brain (the cerebellum) at the back of the skull bulges through a normal opening in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord, and can cause mild to severe symptoms.

In plain English, that means that my brain is slowly but surely slipping into my spinal column. I may need brain surgery at some point, I may not. Either way, it’s a treatment and not a cure.

I could go on and on in this post trying to explain what I go through every day, but I’m going to try a different route. I am including downloadable PDF documents that have all the basic information you need. I’d love for this to be a conversation, so comments will be open on this post just like the others. If you have questions, please ask them and I would be happy to answer what I can.

Always,

Sayre

[chronicilly-studying]

My Chronic Illness Story - Part 1

This is part one of a two-part post describing my journey with chronic illness and how it’s affected my schooling. This part mostly focusses on my story up to the age of about 16/17 - the next part will focus on my last few years of high school, developing and getting diagnosed with ME/CFS, and how I managed to work with my illnesses to get accepted to study Pharmacy at uni. Enjoy! :)

Chiari Malformation - from birth onwards:

From soon after I was born, my mum knew something was wrong: I couldn’t swallow breastmilk properly. And later when I moved onto solid foods it would often not go down my oesophagus like it should, but go up into and out of my nose. I also had central sleep apnoea – which means that I would randomly stop breathing for a short time – to which other mothers would say that I was doing it ‘for attention’. My speech was mostly unintelligible (seriously, I think my parents and a couple of other family members might have been the only ones to reliably know what I was saying. I can’t always understand myself in videos from that time) as I was slurring my words together. I also had some co-ordination and balance problems, but I’m not sure to what extent that was obvious or affected my life early on. My mum had to go to multiple doctors to finally find out what was wrong with me – a 19mm type 1 Chiari Malformation.

A type 1 Chiari Malformation occurs when the cerebellar tonsils – the small bits hanging off the cerebellum – are pushed into the hole at the base of your skull, which is called the foramen magnum. A 19mm herniation means that my cerebellar tonsils had been pushed down to 19mm into that hole. This meant that a lot of important nerves were being compressed such as those responsible for controlling my breathing, swallowing, and co-ordination. I also had partially impaired flow of my cerebrospinal fluid (CSF) – the liquid surrounding the brain that helps cushion it inside your skull. This meant that in conjunction with my other symptoms I also had headaches.

In around August 2005 I had decompression surgery meaning that part of my skull and the discs of my first two vertebrae were removed to give my brain more space and to relieve the pressure inside my skull. While it took a little while for all of my improvements to happen my parents say there was a pretty stark contrast in my ability to do many of the things I struggled to do before, and my speech now isn’t slurred at all. I’m grateful that because I was so young when I had this surgery I don’t really remember my life before, and most of my first-hand experience with this condition has been having more MRIs than your average kid to keep an eye on my herniation and having headaches more frequently than other people my age.

It is something I was always aware of though because my parents would always notify PE teachers (and later on I would) about my condition and explain that there were certain activities that I wasn’t allowed to do – such as having to sit out on a lot of the gymnastics activities at school or not being allowed to play contact sports either at lunchtime or in PE lessons. Because the scar on my neck over 14 years later is still fairly prominent it’s also something I or my parents have had to explain to every new hairdresser I’ve been to so they don’t freak out too much. 

Anxiety - 8/9 onwards:

Unfortunately, as many other people with chronic illnesses will understand, my Chiari malformation wasn’t going to be the only health issue I’d have. While the first panic attack I had was when I was about nine, my anxiety didn’t really start to develop fully until I was around 12 or 13. While it took me another few years to get a diagnosis of generalised anxiety disorder (GAD) it’s clear looking back I likely had it then too – I once had a panic attack right before a ballet lesson because I hadn’t been able to come for a couple of weeks and I was that worried about how behind I might be on the dances we’d been working on. Surprisingly – or maybe not – I never had panic attacks about schoolwork, but I suspect this was more because I channelled my anxiety into more productive means such as studying way harder than a 13-year-old needs to than that I didn’t have anxiety about my grades.

By the time I was 16, I finally got that GAD diagnosis and I’d also developed social anxiety or social phobia. Once I started therapy it was like a light had been shone on a lot of my habits. It turns out being too scared to ask teachers for help because you’d always been ‘the smart one’ since the day you started school is in fact a sign of social anxiety rather than that of an independent learner – the independent learner will try to work through things on their own first, but they know when to ask for help. While wasn’t on the verge of failing or anything like that both my anxiety about marks and my actual performance at school drastically improved once I started biting the bullet and asking for help more. I’m still not perfect at this, but I’ve definitely come a long way.

While I wasn’t on it for very long, I would like to note that I was actually prescribed venlafaxine (sold under brand names like Effexor) for my anxiety early in 2018 – I wasn’t really seeing any improvement on the dose I was on even after the time period it was supposed to come into effect (it was the lowest dose my GP could prescribe if I remember correctly) so rather than mentioning this to my GP and maybe being prescribed a higher dose or a different medication, I took myself off of it. I do not recommend doing this at all – I’m lucky that I didn’t have many withdrawal symptoms, but you shouldn’t try to take yourself off antidepressants without a doctor’s supervision. Withdrawal for some people and some medications is no joke, and you might be putting yourself at risk of a relapse for whatever condition you were taking the medication for in the first place. I have done a lot of work so that I’m mostly able to manage my anxiety without medication, but I have considered asking to be put back on some kind of antidepressant.