Chiari Malformation: Coming to Terms with a Neurological Disorder- and keeping my sense of humour!

I gave some serious thinkage as to whether to share this or not, and to paraphrase from the legend, Frida Kahlo, I am not sick… though I may be a little bit broken. In the bigger scheme of life, I see where I am today and count my blessings. Life is short, too short to ponder on what others might think of you – that’s not your business as another popular saying goes – so I’m getting on with things. And more thinkage.

I’m one of the millions who deal with pain, often chronic, on a daily basis – always have. Back and spine issues have been the bane of my life, but also migraines, neuroglia and a host of other maladies that would make me sound like a hypochondriac if I were to list them here! I’ve also battled serious anxiety and depression, some of it, though not all of it, I can certainly link to carrying pain, physical and emotional. I am not divulging this information for sympathy. Like I said, I am one of the millions, but if I am to write about this health issue, it has to be done with an all or nuthin’ honesty!

A couple of months ago, I was diagnosed with degenerative disc disease in two areas of my spine, which although is a pretty grim result, actually helped me to come to terms with a lot of the symptoms that have been getting progressively worse. I can handle DDD – I just need to mind my back and take appropriate care to try and slow down the degeneration.

However, other ‘symptoms’ prompted my neurosurgeon to investigate further, and that’s when the real bombshell hit. Something else had shown up, a rare (though the jury is still out on the rare bit, from what I can gather) neurological disorder called Chiari Malformation.

And yes, I was as dumbfounded as you might imagine – WTF??? being the questioning phrase of choice!

So, with this, let’s face it, pretty shitty diagnosis on top of the DDD, and the further examination and treatment plan that lies ahead for me, I decided to try and find out more about this unknown thing that I could quite possibly have had since birth. It can be congenital, with serious complications for infants and young children.

There is a lot still to be discovered about CM, it appears, and information is constantly being updated.

If we are honest, we can all admit to trying Doctor Google for what ails us, but I am steering clear of anything that is not verified and documented by experts. And, I have decided to write about it in the hope that this process might help me to drill down into a disorder I must learn all I can about, but also to share my experience so that anyone else who is presently, or might be diagnosed with this in the future, can at least have a place to check in with a fellow soldier!

So here are the deets! (A brief amalgamation of information I researched from medical websites – without the gruesome graphics!)

Chiari Malformation is a condition named after Hans Chiari, an Austrian pathologist who first described it in the late 19th century. It is a disorder in which the cerebellum is smaller than normal (YES, I do have a rather small head, thank you very much for noticing!) causing the cerebellar tonsils to migrate into the spinal canal. (Mine have travelled 10mm). If the cerebellar tonsils obstruct the opening of the skull that connects the brain to the spinal cord, the flow of cerebrospinal fluid can be blocked, pushing the cerebellar tonsils down even farther and exerting pressure on the lower stem of the brain.

Yes, it all sounds yuck and quite serious, which it is, though I’ve been told that if properly diagnosed and monitored, with accompanying pain relief of the constant and serious type, it can be manageable. An invisible disorder, (because ya don’t look sick!) the condition can cause headaches, fatigue, dizziness, difficulty swallowing, muscle weakness and balance problems. It can also produce hoarseness, sleep apnoea, weakness or numbness in legs or arms, neck pain, pain across shoulder blades, general body pain, ringing in the ear, trouble walking, blurred vision, mood changes, anxiety, and problems with memory or concentration.

Apart from the sleep apnoea, I have been dealing with all of the above in varying degrees for more years than I can count. Insomnia is also another problem for me, and I can only assume that this too is linked to CM.

Searches on pain management and associated issues of fatigue brought up a couple of helpful links. This LINK for more detailed information and also, this useful LINK from writer and broadcaster, Andrea Hayes, who has also been diagnosed with CM. These are not definitive portals of information by any means, but they may help in gaining a basic understanding of the condition, and in Andrea’s case, her personal account as detailed in her book, Pain Free Life, my journey to wellness. 

So for now, I’m dealing as best I can with it all, staying positive, though I’d be lying if I said I didn’t worry about what might be waiting for me down the years. Anyway, I’ll keep you posted! And I’ll keep doing what I do, writing out the thinkage! And if anyone reading this has CM, hugs to ya!