(Posted initially on Linkedin - I will expand on the topic in future posts)
I have debated writing this post for a while now, but I think it's worth it for transparency and awareness.
This year, I started noticing a gradual health decline. At first, I thought it was just a matter of getting used to being employed full-time again, after years of working for myself. However, time passed and new symptoms kept appearing. My fatigue was starting to feel less and less normal for a 30 year-old person. I decided to take it seriously and started investigating the reason why I was feeling this way.
Throughout the year, I have been doing a lot of exams to try to pinpoint the reason why I was feeling extremely tired despite covering the basics (sleep, water intake, rest, diet) and why new symptoms started showing up. At first, everything came back normal which definitely felt frustrating because I could feel that something was up. Thankfully, I decided to listen to my gut instinct and asked my doctor for imaging "just in case". My doctor agreed to prescribe me a cervical MRI, despite having done a brain CT scan previously that came back normal.
I am thankful I did, and that my doctor agreed to prescribe it, because we ended up finding something quite life-changing. Mid-September, I received the MRI report, indicating that I have a rare brain malformation called Chiari type 1, as well as a neurological condition called syringomyelia.
Reading the report filled me with both panic and relief at once. Finally, some answers!
Given the fact that Chiari is a relatively rare malformation and that the combination of Chiari and syringomyelia is even rarer, finding proper resources and medical assistance takes a bit of time.
It is impacting me on a day-to-day basis with symptoms like chronic fatigue, mental fog, confusion, vertigo, headaches and migraines (and more). For this reason, I want to apologize if I take longer to reply to messages and emails.
I decided to stop working temporarily to rest as much as I can while I look for a knowledgeable neurosurgeon to plan the next step. While this malformation can't be cured, symptoms can be alleviated with a decompression surgery. I'll let you Google it.
It's been a real roller-coaster of emotions since I received that report. If I'm being honest, I am a little bit afraid of what tomorrow might bring. I am not looking forward to having part of my skull removed. Somehow it'll be the second time my skull gets cut up 😂 (I had jaw surgery as a teen). However, if life has taught me anything, it is that you have to remain hopeful, positive, and do whatever you can to the max of your abilities. Tomorrow is not promised and neither is a healthy body!
Moral of the story is to trust your gut, and push for answers if you feel like something is wrong. No one knows your body like you do!
Thankful for medical professionals that truly care, for orgs like https://apaiser.org/ and http://chiaribridges.org/ & for anyone advocating for the funding of research and healthcare in general. 🙌
Let's see what 2026 brings :)