I woke this morning to the very sad news that we lost a member. She was relatively young and a mother. As I thought about this throughout the day the sadness was taken over by anger. I am angry. “It’s all in your head”, “well, you look good”, “nothing to worry about since you were probably born with it”. “No big surgery - one of the easiest ones a neurosurgeon preforms”. I have been in this whirlwind now for over three years. I have always tried to give hope and be positive. But at what point are we all avoiding what the bad result could be? If we hear cancer - even the most cure able forms - it shakes you to the core. Are we all being naive about the approach we take when dealing with this condition? I have my own theories but often I keep them to myself to allow the medical community care for us. But I am honestly losing faith in their full understanding of the condition as a whole. If you don’t care to hear my opinion or advice for getting treatment feel free to stop reading now. Know that I only wish everyone the best and want everyone to have a good outcome. Please don’t think this is a know it all approach - as I am still in the rats maze myself.
If you find you have chiari - if you were my child - this would be what I would do.
Get checked for ehlers dahnlos - too many of us have it for it to be coincidental or unrelated
Be tested for dysautonomia again too many to be coincidental - a result of pressure on the nerves and diminished blood flow cerebral flow exchange
A flexion/ extension upright MRI
Rotational ct scan
A sleep study for apnea
From here I would learn all I could about all these conditions and how they are all intertwined.
If you wonder where I have come up with all this or why this would be my approach - I have had two surgeries to correct that stupid chiari and there are just days I am worse off than before. I am now facing one if not two more to correct things that are still not right. As for the chiari - mine is perfect!! Non existent. If I didn’t have the mesh showing on the scan you would never know I had a problem. The rest is fully my opinion and no one has confirmed my theory - but honestly when things make sense then it just makes sense. I have ehlers dahnlos - cervical instability - perpetuated the chiari - caused dysautonomia - surgery made my already flexible muscles over stretched making me a bobble head - again making things very uncomfortable daily as it exacerbated the instability. My skull is actually not hinged in my spine it slides around. May only be mm’s but when it ain’t supposed to move and it does… Everything in your head is only separated by mm’s
I never want to hear about any of you on Facebook as I drink my coffee. I never want to spend another morning crying over a preventable loss. Please everyone get checked for ehlers dahnlos, cervical instability, dysautonomia and sleep apnea. There are some dieeases and situations where there is just no cure - I don’t think that is the case with chiari with all the right steps and knowledge.
I hope this is received with the intention that it was written. I have had years to watch, learn and observe - what if you don’t have that luxury. Obviously I also don’t want to be an alarmist but often drs don’t have the proper numbers to correlate the conditions. If the patients are educated perhaps we really can be the ones to bring on change.
Best wishes to you all