Sometimes in life it is difficult to know exactly
how you feel and the older you get the more confused
you get - well that's how my then 16 year old daughter
saw it, she could not discern the fact that it is
possible to feel two emotions at the same time. All
hail the certainties of teenage life.
Seriously
I am a wee bit screwed up right now because on Tuesday
I was finally promoted to that legendary, or even
fabled, status - diagnosed. My last MRI scan results
came through and I was called to the local hospital
to see my Neurosurgeon, DR Durward of the Glasgow
Nuffield Hospital.
Doctor
Durward worked for the Scottish Group in the Myodil Action
of 1995 and from his attitude I think that he was not happy
with the outcome of that action. He has a compassion about
him which is hidden, but one can feel it, I am sure his
sympathies were with those of his patients who were shattered
by that result. He was engaged by my solicitor (attorney)
who, after my last negative NHS MRI Scan in May of 2000,
had fought for, and won, the necessary finance from the
Legal Aid Board for this new, enhanced examination . Again
the wheels of justice running very slowly. Could that be
deliberate?
Dr. Durward
rang me at home the previous morning to say that my results
were in, that there was Myodil in my spine, and, could I
attend his clinic the following morning at 10.30 a.m. No
problem, and I arrived with time to spare.
He began
by telling that the Royal Navy, who were responsible for
my myelogram in 1974, would not, or could not, tell him
what contrast medium they had used on me. However, the enhanced
scan has revealed what can only be Myodil that it is still
present in my spinal column today. Thus, as neither MRI
revealed any traumatic damage that could generate my symptoms,
and given the state of my lumbosacral nerve roots, it was
his opinion that the only applicable diagnosis was "Myodil
Arachnoiditis".
Oh!
Stand me up slowly brothers and sisters, that hurts!
I know
this is no laughing matter but, I have been unable to work
since October of 1998, and have despaired because nobody
would give me any clues to what was causing my pain. It
was me who found out about ARC trawling the Internet and
suggested it as a possibility to my GP in August 1999. So
here we are 6 GPs and 2 Consultant Neurosurgeons later,
a result, a difficult to dismiss diagnosis which also names
the culprit that laid waste to my personal landscape, almost
leaving nothing in sight to take comfort at.
Thank the
Lord for my friend and stalwart ally, Jude. I don't think
I would have been able to put up as much of a fight as I
have without her, she is a staunch ally and highly clever
"Devil's Advocate" and motivator. It is she who
scrutinizes everything before it goes onto the site, helping
me by sorting the wheat from my creative chaffed, and, she
builds great web-sites too!
If you
like the Spine Gif she has created on my Home Page please
tell her (jude@she-online.co.uk). I tell her that it is
brilliant and true rendition of the pain and the other unwelcome
sensations that course through ARC damaged nervous systems.
If you would like to reproduce it I am sure she will be
more than happy, as long as she knows first.
I have
to say some in favour of the GPs caught up in with problematic
cases of ARC, none of them had received any instruction,
or other training regarding this entity, Arachnoiditis,
and were, in the main, receptive, understanding and as helpful
as they could be. Three of them have ask for, and been given,
all the relevant medical references and papers that I have
found in my quest to find out the truth about my condition..
If your
local GP does not understand what ARC is, how it came to
be one of the 20th Century's medical disasters and what
it is doing to you, stay with me. We have ways of getting
your point across now see details of how to below, I am
sure that he/she will be on your side afterwards and you
don't have to bribe them either.
Money,
Money, Money, and none of it mine.
I have
to to ask, how much all of this has cost the country? It
was the Government that
paid all the expenses in May 2000 and here they are paying
again, very shortly my Solicitor/Attorney will be contacting
them regarding their part in my medical history. I will
also be contacting the British Legion to ask them to fight
for my Pension Rights to be brought forward, because my
injuries were received whilst I was in Her Majesty's boating
club. This on
top of the money that it costs for them to give me the barest
of living standards, there are no flatter, squarer, monitors
in this house, our digi cam is second hand, and, the wee
Corsa in the yard is rusting as we speak.
My point
is - Would it not be cheaper just to pay up and shut up,
Mr. Blair? That is what your, now, Home Secretary, Mr. Blunkett
promised ARC sufferers whilst he was Opposition Health Spokesman
in 1994. All comments on that matter should be sent to No.10
directly if you feel moved to do so, it will land on the
same mat as mind did. Who knows? If enough of us were to
do so en masse, could it be ignored? If it is then I suggest
all of you Brits out there request a copy of the Myodil
file from the Department of Health, that would slow up the
works something awful, eh?
Oh!
Put a sock in it Mike. What did the paperwork say?
O.K. Enough
of my babbling folks, this is what the Neuroradiologist
had to say in his report, please call for a sick bag first
if you are at all squeamish. No, It's not that bad - is
it doctors?
"The
lumbosacral nerve roots are seen as desecrate down to the
L4/5 disc
level from L4 to S1. The lumbosacral nerve roots are seen
clumped and
displaced peripherally around the lumbar thecal sac. This
gives the
appearance of an empty thecal sac, one of the typical signs
of Myodil
Arachnoiditis. The same appearances are well demonstrated
on the sagittal
T2 weighted sequences where there is an absence of nerve
roots within the
thecal sac from L4 downwards and thickening of the thecal
margin
posteriorly."
This a
great vindication for me and all I have been asking for
over the last 3 or 4 years, though I take little pleasure
in it, other than being able to contradict my previous Neurosurgeon
who told me that ARC as an entity "Only exists
as a matter of litigation". This man also stated
in his report that the localised ARC which he saw on the
MRI was, "not sufficient to explain this man's
claimed symptomology and you can take that to mean what
you will." Obviously not a man with a sense
of humour, nor humanity. Many of our Neurosurgeons are,
unfortunately, cut from the same cloth which is why our
people have such difficulty getting diagnosis', and are
treated as if they were at the rear end of the heavenly
brain queue.
Watch
out! There's a camera about
- The Arachnoiditis DVD - "Fighting Back" from
SnazzReality
What "Battlebus Tour"?
Sorry one
and all. I have taken enough of your collective time. I
trust and hope that this finds you all in good fettle and
ready to stand to the guns as we prepare to fire a broadside,
with the documentary and, hopefully the Battlebus Tour,
into their ignorant and unguarded flanks. If any of you
have not heard of the Battlebus Tour concept please ask
and I will send you off the draft copy of the action plan.
Those who need the video please go to:-
http://www.snazzreality.co.uk
You will find on arrival that Isabel and Carl have put some
clips from it onto the site and maybe you will even find
your own handsome mug amongst all the others. I hope you
will agree with me, having seen the video, that it is a
very moving experience watching it and that, without hysteria
or pointing fingers, the team have managed to put together
a video which answers many questions, but, equally, leaves
some of the questions for the viewers to raise at their
local GP's, M.P.'s Surgery, their local hospitals or - at
a Battlebus Tour Public Meeting.
More
FDA Truths Revealed
I must
also bring your attention to a paper published on Dr Charles
Burton's site by a Dr. Suzanne
Parisian. This 106 page document prepared for a court
case reveals the inside story behind Pantopaque/Myodil and
confirms all that we have all been saying for years. It
also verifies almost all of the badly battered photocopies
of US FDA documents which have been going the rounds, check
to see if yours is in there, I have found mine.
Summing
up this week, with the doctor's report on me, and, Dr Parisian's
paper, it has been unpleasantly negative in some respects
and mind-boggling positive in others. If it proves anything
at all, it proves that this fight is fast becoming winnable,
events are falling into place for us, soon we may have the
upper hand? Who knows? In a few years maybe we will be holding
reunion get togethers to celebrate the end of a long fight
which has seen far too many tears and far too little laughter,
it has also been a dirty fight, at times, with little or
no compassion from the dinosaurians amongst the medical
profession.
Let's now
just put that behind us and take some comfort from the fact
that, tears or no tears, the fight is still in us and we
will have the last laugh.
Regards
to all and my thanks to all of you who have, at some time
or other, been a shoulder for my head, or a brickbat to
wake me, or have sent me those all important papers. If
I still own anybody an e-mail, please kick my butt and remind
me, I'm off to rest my spinning head.
Mike Feehan
Top
Home |
