Chiari Malformation Awareness Month 2022.

Chiari Malformation Awareness is imperative.

It is – or mine is- a condition that was left unrecognised, undiagnosed and untreated for many years.

The awareness I would LOVE to be able to deliver is to the medical professionals (none of whom I want to name or shame) yet nonetheless the many doctors who by not recognising that a “substantial chiari malformation” was my condition, allowed me to degenerate for too many years.

I would like to applaud the honesty of the surgeon who when I eventually reached his care, was honest enough to tell me “i hate this condition as there is very little I can do to help cure it!”. I value him.

He did however, in the 8 hours of brain surgery remove the crippling headaches which had become an integral part of my life, and one of the reasons I had to retire from work at much too young- disabled by pain.

To those who missed the horrific gamut of symptoms which Chiari Malformation caused I wish you had been more observant or concerned. I wish you had cared enough to look at the overall person.

my symptoms were NOT:

somatisation
migraine
earache
lack of function
generalised pain
depression
fibromyalgia.

In the years before my brain was decompressed I developed so many conditions and symptoms I may never have had to. Those were the ones my neurosurgeon knew he could not remove. Those years I was invalidated and neglected were, I feel, missed and thus I am a poor outcome.

My life has been dramatically worsened due to lack of awareness of Arnold Chiari Malformation.

My life is still being made much more compromised by those who fail to understand Chiari Malformation and its unfortunate complications after brain surgeries, brain injuries, meningitis and its rare comorbidities.

i HOPE this post may help another patient be looked at and their chiari symptoms acknowledged, identified, be investigated temporally, diagnosed , treated and cared for with medical professionalism.

Thankyou to those medical professionals who DID afford me appropriate care and humanity. You are unnamed but so very genuinely appreciated. There is much that I could still benefit from.