i really WISH that Chiari malformation was called a chiari disease.
Malformation is to me a misleading term given that it isn’t curable by the surgery i had and many others had for it.
i would rather call it Chiari Syndrome…as syndrome to me implies a LIST of collective disorders and symptoms, which sneak up on us, remain with us, and make life gradually HELL!
This is a STRANGE topic to be writing…and one i feel UNDER-EQUIPPED to write if am being completely honest, as I am still deciding on the sections…as it is how i lived with it, and through it.
for me…the stages begin with
you have these strange,nondescript, seemingly disjunct symptoms.
RANDOM eclectic mix of symptoms and organs and invisible so questionably “yer nerves!” And of course each time you lay down another symptom, it’s like the formation of a sedimentary rock…it forms another layer …and it STAYS!
in may case this lasted about 7 years
- neck pain
- back pain
- shoulder pain
- aching/burning/radiating into neck
- tiredness sitting for extended periods at a desk/piano
- irregular heart beat
- sporadic then long-term “episodes” of tachycardia.
- pain injections develop to pain nerve spinal ablations
- numb lower right leg – how random!
- car accident – this lower back pain (you can never have enough pain)
- tingling in soles of feet when raised, or when legs crossed
- BLINDING vice grip headaches
- headaches last days…no visual aura tho.
- headaches with extreme fatigue lasting days –
- my hibernation days – all i could do 24/7 as sleep. NOT drugged. Just self regulated sleep.
- headaches with electrical shooting pains and head numbness
- face numbness- interestingly differently affected on each side.
- you notice your face is becoming lopsided –
- you start to add a winter layer
- fingers start to be tingly -3rd,4th and 5th
- SCAN for stroke…none…BUT
the stage ends with YOU HAVE A DEFECT
referral to neurosurgery – probable “arachnoid cyst” –
meet neurosurgeon whose first course of action is to dismiss me as an ejit. We did NOT hit it off and i had never felt more rudely dismissed by a misguided EGO before.
your symptoms could not possibly be caused by one of those…sure you have probably HAD THAT since you were born!
then to disprove him and his arrogance, and show you KNOW YOUR STUFF you produce older scans…and now only are YOU WRONG but so are both the SCANS.
- first one spotted what was a “tonsillar herniation”
- tonsillar herniation is 0-4mm
- second one sees “supposed arachnoid cyst”
- MISSED tonsillar herniation …oh and
- BOTH SCANS HAD the 2 defects on them…just read wrongly…and tonsillar herniation was 17mm long so was CHIARI MALFORMATION.
BUT- just cos you have 2 defects – both rare- but probably neither are reason for any of the these issues you have.
Refer to neurologist to rule out any other possibles and FINALLY 7 YEARS LATER than the start of my symptoms, i am the proud, accredited to OWNER of a rare condition, and a probable incidental finding – the “supposed cyst”.
these weird issues are new, obscure, and as random as winning the lottery. But- this bit i DO now appreciate… nobody is in any hurry to DO anything….but…..in fairness do you WANT a black-n-decker in your skull?
eventually after what seems an inhuman wait…a new scan..one that can tilt the balance to surgery or not surgery… yep my chiari was clearly “attenuating the flow of CSF fluid” so we operate.
have now LOST my ballsy argue with the doctor me, and replaced her with a blonde babbling about to have brain surgery with enormous risks me! He is talking procedure…i am talking hair!
now i really do want this arrogant fella to KNOW his shit as he is heading into MY brain!…he is my Neurosurgeon and we get on really well! It’s a relationship of straight speaking. suits us both
DENIAL V FEAR- what risks? stage
handing overpower of attorney
arranging and discussing my funeral music – not cos i am maudlin but cos i am a MUSICIAN…it matters!
put off buying jammies but i had to eventually.
PETRIFIED of anaesthetic.
had recently been very badly treated by a group of people i had valued, and the NEGATIVE feel in my head was overwhelming. ROARING at me that i would not wake up…PETRIFIED. many many tears….prayers due to the bullying i had gone through were NOT an option for me…couldn’t pray.
Wrote notes to my children – or should i say I blogged to my children… hoping to God they would not have to read the piece.. https://atleastihaveabrain.wordpress.com/2013/12/21/5-days-til-surgery-5-gold-rings/
“lorry drives at will over your head” feeling.
in my case ACUTE stage became much LONGER than planned.
- had a lot of hydrocephallus
- “tatty” dura
- hair like a TROLL – glued everywhere.
- “supposed arachnoid cyst” was NO SUCH THING – but was benign vascular mass
- CSF leaks
- lumbar drains for about 7 weeks
- antibiotic about 5 weeks
- 7 visits to theatre
- VP shunt fitted.
home after 8 and half weeks.
THIS stage was sad for me. I live in a small town where everyone knows everyone, but in 9 weeks in hospital – encompassing one brief home trip which ending in CSF leak and an emergency ambulance back up… but nobody seemed to know, care, worry how my meningitis or skull were.
an open-ended period when people allow initially for you to be awfully tired, utterly wrecked and you ARE. I was probably worse than if had only one job done. YET seemed so long since had seen ANYONE was stir-crazy.
Visitors mattered so much – they made me feel loved…
i didn’t feel i was as “fantastic” as they did…but i had no idea what they expected – nor what i did.
Recovery was steady…from head smashed…to moving while holding my head..to help me lie down…to getting dressed…bitta makeup.
but recovery plateaued…much earlier than i thought.
earlier than my body expected.
Plateau stage- is this it?
This arrived after about 6 months after surgery for me.
- weak fatigued legs
- exhausted legs
- legs that feel i ran marathons…
- eyes not focusing together
- right eye not moving at times
- face totally asymmetrical
- balance not great
- hands stiffening
- hands swelling
- still sooooo tired
- overwhelmed by tired
- spell stupidly when tired
- can’t read my writing when tired…
- slur speech when tired
- get dizzy watching football
- people see you out and assume surgery is recovering
- people stop visiting as they think you are out and about
- you stop going to people’s houses as it clashes with your afternoon nap
- you start to feel invisible
- you become less social
- less interested – and less interesting
- forget story lines in serialized programs
- short term memory gaps
- processing pauses
- dizzy when you change direction
- walking in a crowd feels like a scene from trainspotters….like the world is moving at confusing overwhelming speeds and directions and psychedelic colours and almost makes you hold on tight confusion.
- think letters in one order- type in a different order
- varied cocktail of drugs on demand…not anything recreational – just take the pain away medication.
- days when hair roots still hurt
- reality dawns…
- the reality that without aids like my faithful friend Hazel- my stick – i would not manage.
- that one adventure in the day – is enough
- like a shower
- watching a football match
- walking through a few shops
- going to a cinema
For me it was the moment when like a light bulb turning on, i saw that we as a family were doing noting, and able to do nothing, and putting off what should be away days out, cancelling weekends away as you can’t see HOW you can manage…
then you realise you need a wheelchair.
tell yourself it’s short-term but in your heart…you know…this is acceptance…your new baseline. And it was. I now have my own permanent wheelchair and a skooter.
Acceptance is fecking tough. its NOT resignation. its NOT a cop out. it is a horrible dawning on you that you may not improve beyond this point. not in significant ways…
- the disconnection with community
- the PAIN of loneliness
- the sense that you have no social you
- your PC interface is your chats
- the struggle for purpose
- the guilt of not being better mum
- the lack of ability to plan as you are too tired to look ahead with purpose…
- the struggle to put on the mask of “i’m grand” that everyone wants to hear or in my case my new almost cheerful “above ground”
- depression? you would be STUPID if this change did not feel like a LOW
- pain – ALWAYS pain
- of COURSE am angry – nobody wants to feel this useless
- exhaustion – ALWAYS there
- weight gain so big loose clothes and never feel looking good
- appointments that to an extent VALIDATE the shit you feel.
- Medication becomes the heavy stuff- the life long stuff…
am not remotely seeing HOW to reconstruct a life that had value, talent, ability, exceptional musical ability, teaching, directing music, valued member of community.
good luck…. i need neuro psychology to help me manage adjusting to each stage as i get there. It’s a challenge…CONSTANT!
guess my “acceptance” has a way to go yet!
DOES IT END?
am now over 4 years post brain surgery, I now have gained 3 stone..about 3 sizes and lost one. i have no driving license. No independence. No dignity. No ability to do anything without knowing the impact on my body will be MORE than the physical recovery should be.
I have another rare NEW condition…”central hyperventilation syndrome” which means my autonomic brain is forgetting to breathe fully at night. I am waiting for my ventilator.
my legs are WORSE, more tired…
wheelchair am i.
I have had a shock meningitis AGAIN- 4 more weeks in hospital.
And as it occured because i have recurrent unpredictable Cerebral Spinal Fluid leak, I am prone to more again….
and yet i get asked every time i venture out in my wheels…“what happened you?
Is it your hip?”…and there is no uncomplicated answer.