Living with Chiari: 6 months later
It's been 6 months since I've received the diagnostic that changed how I view my future: a Chiari type 1 malformation, and syringomyelia.
At first, I had a lot of very conflicting emotions: I felt validated and seen, but I also started feeling anxious about what it meant going forward.
Even though it's not deadly, it can get pretty serious and in some cases lead to becoming paralysed and/or losing control over some basic functions such as eating, drinking and bladder/sphincter control. Not exactly a joyful outcome. The progressive aspect of syringomyelia scared me, as well as the limited knowledge that most doctors, including neurosurgeons, have about both conditions.
They are both, after all, rather rare. Or is it rare because very few people actually get the type of imaging that allows to diagnose it? The million dollar question.
Anyway, after a first few months spent trying to educate myself as much as possible, reading medical reports and papers, studies, and learning from other people that have these conditions, I decided to get several surgeons' opinions.
I saw three different neurosurgeons, who all agreed that at the moment, I am a candidate for surgery (called a craniectomy). They also all said it was not necessarily urgent, but since the conditions are progressive, it would be smart to do it while I have relatively few symptoms (even though I had a list of over 10 symptoms).
After reading dozens if not hundreds of testimonies from patients all over the world, I discovered that unfortunately there is a discrepancy between what doctors and patients consider a success. While surgery has relieved some patients' symptoms, a considerable portion of patients have testified that they feel the same or worse. Not exactly the kind of things you want to hear when you're being told to have your skull cut open.
Therefore, after very careful consideration, I have decided to postpone the surgery and to try my best to focus on symptom management and overall care.
It's been about 3 months since I made that decision, and I can honestly say I do feel better now than what I felt in September.
My daily medication continues to help with my main symptoms (migraines, headaches and vertigo). I now rarely have to deal with them, unless triggered by some external factor.
I started taking Lion's Mane supplements on January 24, and since then I feel like I'm progressively going back to being myself. My brain is no longer fighting me 24/7. My focus, memory, mood has improved. My brain fog is gone. I no longer have to go against the current when forming thoughts or sentences. What a relief!!!
Finally, in terms of other physical symptoms, I notice that it has been fluctuating. Some symptoms got better (such as tingling in arms/hands, temperature sensitivity, overall tension around the neck, trapezes and shoulders). Others, like fatigue, weakness, shortness of breath are more variable. I'm trying to get moving and to stay active as much as possible, while also learning which movements trigger me, and what amount of physical exercise is reasonable.
Overall, and despite an extremely rainy winter (which tends to aggravate me), I do feel better than I did in September. I think a big component behind this is the reduction of stress. I am trying to eliminate stress as much as possible from my life, either by making adjustments to my daily life, changing my perspective and regulating my nervous system.
I do plan to ask for another MRI in the coming months, to see if my syrinx has grown or not. I'm praying for its stability, at least. It would be fantastic. Let's see how it goes. I will keep you all posted!
All of that to say, healing can be done in a myriad of ways. I'm not anti-science, never have and never will. I've had to undergo serious surgery before and I'm grateful for it. But I'm also grateful to have a say in how I manage my own body and disabilities. When the time feels right, I will probably undergo the craniectomy. Until then, I'll keep taking care of myself as best as I can!
Thank you for reading until the end. I wish you all great health!
Camille