Re:Please help - I need advice

[Guest guest]

Hi Terry (and all) - sorry for the long post!

This first paragraph is in response to Terry Lynne's recent post.

Surely passing out during the flexion extension test for Cranio-Cervical

Instability holds some significance! (Could this be subtle intermittent

brainstem compression ?) Also, to me, you not having cerebral flow

unless sitting is also very important, as you are laying down for

several hours each night!

I had a backwards fall, banging my head on a low stone windowsill and

twisting my neck. The back of head/neck pain became apparent

straight away but eventually mainly became troublesome at night

(when my head was being pushed frowards by my pillow, as my neck

muscles relaxed). If I looked up (head goes into extension) I would go

really dizzy straight away, as if I was going to pass out, so I avoided

this. If I looked down (head goes into flexion) to read a magazine and

kept moving my head from left to right, it started triggering throat

'tightening', so I avoided this too. I had difficulty working bent

forwards also, it hurt my arms, I felt unwell and I soon became

exhausted. Eventually, I realised that just leaning forwards slightly

could cause arrhythmia and alter my heartbeat.

Anyway, going back to a few weeks after the fall, as the neck stiffness

was wearing off. I gradually developed a cascade of symptoms again

mainly at night, including numbness which in turn affected arms, legs,

abdomen, scalp and tongue! The only thing that lessened this (albeit

slightly) was to sleep sitting up. It was very scarey and eventually I

woke in EXCRUTIATING ALL-OVER PAIN 3 times a night and this

went on for YEARS.

I had many other weird symptoms fluttering and twitching

(fasciculations) in my muscles, my legs could go white or purple,

My tissue would 'indent' very easily and my legs could be fat one

day thin the next or weirder still just thin around my shins (usually

with excrutiating pain!). I told my GP and she sent me to see a

Psychiatrist!! Luckily, as I'd photographed and videoed my

symptoms, he believed me and referred me back to my GP to look

for the physical cause. Other than throwing painkillers at me,

no-one here in the UK was doing anything to find out the true

cause of my demise.

So in 2004 I decided to do something about it myself. I obtained

copies of all of my scans and x-rays and started to study, I learned

about the anatomy in the head and neck. I learned how to read MRI

scans and x-rays and visited just about every radiological website

on the internet and looked at examples of injury and abnormalities.

I compared all of my x-rays and scans and there seemed to be

differences where my head joined my neck. I looked at the various

methodologies (and there were many) for diagnosing this injury

and took the appropriate measurements but most of these failed

to recognise the injury, although one or two suggested it. I managed

to recruit the help of a neurosurgeon in Germany who specialised in

injury to this part of the anatomy and he volunteered a whole day of

his time (some people are incredibily kind and caring towards their

fellow man aren't they! - I can never thank him enough). Anyway,

unable to diagnose me over the internet, he told me to get to a

spinal injuries unit.

Some weeks later, after I had finally managed to get an appointment,

I was fitted with a Philadelphia collar and brace (5 years after the fall!)

I have had to wear this 24/7 but what a difference this appliance made,

it reduced the pain levels to a '3', wow I was so grateful! At last,

something was holding my head and neck in a good relation to each

other at all times, so that my CSF flow could go about it's business

unrestricted.

Other than a partially empty sella 4 months after the fall and a 'more

fully blown empty sella' 2 years later and some degeneration of my

cervical spine (but only as would be expected for my age - fifties)

nothing was spotted on all the (many) x-rays and scans I'd had

taken over the years. However, when I paid the The Chiari Institute

in New York for more thorough investigations they confirmed I had

'a subtle ligament injury (to the cranio-cervical junction) not detectable

on conventional radiography' and they recommended fixation surgery.

I wondered why it wasn't detectable on conventional radiography.

I had already discovered that there wasn't just one method but many

methodologies for recognising Cranio-Cervical Instability and decided

to investigate further. It became apparent that a high percentage of

this injury (between 38-50% according to the research!) were missed!!

(so there are many of you undiagnosed and in peril out there!). Even

though there were many methodologies developed over the years,

not one was comprehensive enough to catch all of the variations of

this injury. However the methodology more recently developed by

The Chiari Institute (TCI) which uses upright MRI imagery, although

it seems very complex to the layman, is indeed a more thorough and

accurate way of detecting this injury/condition. Indeed I managed

to fathom it out and applied the measurements to my imagery,

which identified my problem, prior to contacting them for confirmation.

I found their Dr Bolognese, Dr Nishikawa and Dr Remy very kind,

very pleasant and very helpful indeed (remarkable people!).

However, if you do visit TCI, I would advise you to think very carefully

about undergoing the 'Invasive Cranio-Cervical Traction' as my

post-operative experiences have not been good.

The point of this post is to emphasise that Cranio-Cervical Instability

(CCI) is indeed a serious condition which, if not treated in a timely

fashion (either 'conservatively' with a collar and brace, or 'surgically'

with fixation rods) can only lead to further demise in your condition

which may result in permanent disability. So if you experience any

of the symptoms I have described please ask to be thoroughly

investigated for this. I believe that TCI's measurement method in

itself (without having 'Invasive Cranio-Cervical Traction') is very

effective at trapping this injury/condition.

Once you know what the problem is, you can manage it more effectively.

Barbara (UK)

Post-Traumatic CCI, POTS, etc