Chiari, leave me my legs please!

tODAY, my legs are in pain by just existing.

legs have been the topic of several posts.

it worries me…. am i going to lose the seriously LIMIteD used i have of these PAINFUL limbs?

i had MENIGITIS…while i was in hospital last year,, after having my decompression.

big deal….i thought at the time, as tbh quite a few people seem to have after effects of what has to be a complicated procedure.

So i was another …nothing wildly unpredictable…

I wrote This about the experience.


the main SHOCK for me was the effect of the infection in my LEGS.

I made lots of recovery in many ways since that time…but my LEGS have plateaued

My legs are STILL in PAIN.

previous to my surgery i was unfit…bur human.

working order…i suppose.

i now have PAINS in my legs that i can not define, as is FATIGUE in every cell…
legs seem HUGELY affected since i had the joys of meningitis, a year ago.
MY LEGS ARE weak. 
I suppose the other organ group as affected are my EYES…
have and no doubt will talk about them again.
Legs feel like they have run a marathon.
i couldn’t NEVER in my life have run a marathon.
but other than the most incredible debilitating weakness and flu like pains i have realised that my LEGS aren’t really changing in terms of their ability.
  • i KNOW now that there can be limb weakness as part of Chairi condition.
  • There could be long term RESIDUAL problems in legs  after meningitis.
  • and i had another benign mass removed from the skull too.
So plenty of reasons to explain pains and needing a stick…
needing my wheelchair for anything longer than a DAWDLE.
but strangely even after a day in my wheelchair, my arms (which DO get used)
so NOT pain me, but my LEGS pain me…just by being there, 😦
went to the gym this week. With my OT. 
to BEGIN to see if we could work on what now seem like very “skinny” legs.
that feel the cold way too much.
How were the legs?
  1. LEGS: well this was interesting. When you pedal a bike, one leg pushes and the other freewheels til the reach 180 degrees where leg 2 pushes and leg one has a moment. MY LEGS… seemed to be slow learners… NOT getting the instruction at all. More bad on the Right leg than left… so perhaps more from benign tumour removal than decompression of chiari condition? who knows… but a noticable gap of a second or two each time in the “cycle”…no PUN intended. oh AND she noticed my numb foot was not making great contact on the pedal so i ended up having to use the HEEL on my right foot for contact.
  2. and my brain and my legs are no longer that friendly…we KNEW. but my brain and my right leg (as is the case with my right eye) are no longer communicating. While it makes for neuro problems isn’t it seriously AMAZING a brain?? So i can ride the “recumbant bicycle” for my challenge 2 minutes and when it is my right legs turn to pedal, i have to REMIND it..a we PUSH… actually is funny…and other neuro-freaky-friends will appreciate the humour. i really WILL be on Britain’s got talent yet!

Today, they are painful appendages now raised onto table…

now tingling with numbness

yet still paining ACTIVELY.

my “sensory issues DID extend to my legs before the surgery:

  • numb soles of feet
  • mainly outer toes.
  • numb inside of right leg
  • now also numb on top of foot.
  • oh an i can’t do the Babinski reflex at ALL with my right foot.
  • at times put on a boot, and wonder are your toes- through rubberiness- lying FLAT? or not.
  • are you feet wet? NO
  • but yes a RUG over legs feels needed…even IN the house now.

after a year these legs feel WORSE…not better.

but i do not want them to STOP on me.




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