From
the Archive
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mandy 4/11/2003
i have a condition which is called scoloiosis, which I
have been told includes arachnoditis can you tell me more.
I have just started to read some of the symptoms and letters
of many of the people who have visited the site and I
cannot believe the simalarities of mine to them, I have
a curved spine which causes alot of health problems but
did not associate them with this condition ie frequent
visites to the toilet and bowel problems and most of all
lack of sex drive. you have to laugh cos if you dont you;ll
cry Hi it is me again, Just to add i WOULD LIKE TO KNOW
IF ANYONE OF YOU HAVE ALREADY HAD A SPINAL FUSION THEN
HAD THERE RODS TAKEN OUT DUE TO RECURRING PAIN AND THEN
BEEN TOLD THAT THE ONLY OPTION LEFT OPEN TO THEM IS TO
HAVE IT FUSED AGAIN FROM TOP TO BOTTOM, I get episodes
of rrally bad leg and arm pain and parathesia, several
sever migrains weekly, and legs giving way, i am wondering
if the fusion will help support the spine and stop it
from pressing on the nerves that are giving me this pain.
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Alan Brunjes 4/3/2003
I only discovered the link between myelograms and the
chronic pain that I have been suffering for 23 years today!!
, I am obviously not alone in needing answers to so many
questions......it helps just to know that I am far from
alone.
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johnsac 3/21/2003
Hey! Iv'e been jerked around by the workmans comp. system,
their crooked doctors and even the judges and my own lawyer.
After being misled and forced to have mutiple useless
steriod injections, mylegrams,discograms surgeries that
were not what was needed(ins.co.refused surgery doctor
recommeded and only allowed what they approved) I was
left doped ,in pain and expected to return to work. After
a return to work on high doses of pain killers I fell
and could easily have been completely paralyzed o
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Eric Sutherland n/a 3/19/2003
Ciamar a tha thu (how are you)? Hello and greetings from
the North of Scotland (Dingwall, Ross-shire) I am a fairly
new member although my medical history goes back nearly
25 years. A few months ago I had more surgery involving
a discectomy and decompression at C3/4 level plus a bone
graft and fusion. This was to try to correct paraesthesia
in both hands and arms, but was none too successful despite
having been operated on by one of the most brilliant neurosurgeon
and thoroughly decent human b
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Randi Stough 3/19/2003
Thanks Mike for fighting for recognition.....how could
something like Arachnoiditis be "all in our heads"
when so many worldwide have this? I was diagnosed in 1994
with an MRI film of my back taken in 1991. I'm still trying
to clear my mental reports from the 3 year period that
this was supposedly "in my head". If that were
the case, why did the Orthopod continue to do epidural
and facet injections with Depomedrol every 2-6 months
during that period? I used to blame myself for being so
naive,b
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David Pope 3/17/2003
This site is a godsend to those struggling to understand
what the hell is happening to them and why. I am pushing
to get diagnosed at present and am staring medical retirement
in the face because of this debilitating condition. Keep
up the good work Mike ~ your own thoughts and actions
help more people than you could possibly imagine.
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Helen Colban Helen C 3/12/2003
Very informitive site and the jokes break up the dire
seriousness of this condition. My dear friend has MYODIL
ARACHNOIDITIS and has suffered for many years. Its good
to know she is not alone as she once thought she was?
If there is anyone out there who lives in the Gloucester
or South Wales area or if anyone knows of a help group
who she can contact, please please let me know. I would
love to make her life a little more comfortable and having
someone with whome she can relate to would lift h
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Diane S 3/2/2003
Your site has been very helpful in educating medical personnel
about this illness, they seem to know so little. I bring
copies of information from your site whenever my husband
(diagnosed 1997)is hospitalized for any reason or encounters
a new physician. Thank you!
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Yolandi Lakes 2/21/2003
My dad has arachnoiditis because of treatment he received
in the early 1970's. I am pleased to see that there is
so much being done to bring this to the attention of the
rest of the world. I think it is imperative that the suffering
of these people are heard. The neglect of these greedy
pharmaceutical companies has robbed my dad of an active
and happy life. Keep the fight going!
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mike grant 2/19/2003
to all archies, never give up the fight for pain, always
remember you have people working for you all,like kim,
and kathy, what more could you ask for. I always light
a candle for everyone.regards from mad mike the mersey
mouth.xx
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Keith Campsall 2/11/2003
God it hurts!
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lucy may horobin lucy 2/9/2003
hi mike hope all is well, pleased you were able to get
a diagnosis. a lady phoned me last saturday to say she
was diagnosed, i felt so very humble that she had phoned
me first, dosn't it give hope to the coming years that
the g.p.s are taking note, that some consultants are listening,
and reading the info we pass
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Marsha Gullett 2/7/2003
Im a 33yr old female hurt my back at work dr. says i have
bulging, deterated, and degertive disks. I've taken steriods
done physical therapy and now starting the epidural steriod
injections just had my first one i feel im getting worse
instead of better. I would like answers to many questions
will this problem get better can it, or am i always going
to be in pain. I would really like some information on
this
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Kerry 1/27/2003
I have had this devil wandering my body for 9 yrs. to
many surgeries & experiments... was sent to Stanford
University Medical Hospital in California. just had a
Intrathecal Pump (Medtronics) put in, By God my prayers
were answered & I can walk -- pain is much more tolerable
& diminished.. Great doctors! Luck to all of you This
woman found just alittle bit of peace Kerry Central California,
USA
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Joe Kramer 1/25/2003
MY NAME IS JOE I suffer from adhesive arachnoiditis I
AM FROM CLEVELAND OHIO AND I SHURE COULD USE SOME HELP
AND SUPPORT IT WOULD HELP TO TALK TO SOMEONE INSTEAD OF
GOING IT ALL BY MYSELF IT CAN BE VERY OVERWHELMING AT
TIMES.
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sherry edwards sherry 1/17/2003
need to know ASAP/URGENT if this can be caused by a simple
strain of the back?
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Unni 1/15/2003
Hi, I think I have arachnoiditis, I am diagnosed with
CES-Cauda Equina Syndrome, many CES-people has Arach as
well. I have had good reasons (risks) for getting it,
and I have a lot of the symptoms of Arach. I want to get
a diagnose, what kind of specialist will I have to go
to? I have fusions from L3-S1 and Laminectomy in the same
area, I have had Myleography and many injections without
fluoroscopy, I am a member of the CESSG (support group)
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Unni Gjølga 1/15/2003
I think I have Arachnoiditis, I am diagnosed with CES
and I have read a lot about Arach, and I know that I have
experienced the risks of how to get it, and I have a lot
of the symptoms. What specialist do I get the diagnosis
from, a neurosurgeon? I have had fusions from L3-S1 and
Laminectomy in the same area, I have had myleography and
a lot of injections without using a fluoroscopy.
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Kim Sharpington 1/10/2003
Made interesting reading. My mother died in 2000 with
extreme back pain which they could not seem to control.
She had two discs removed 7yrs previous and developed
a strange unidentified shadow in her lungs in 1998. I
was told she had developed a muscle wasting diesese! I
hope you are not in too much pain.
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eddie murphy 1/2/2003
always look on the bright side
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Freddie Lytle Arachnoiditis Foundation of Am 12/30/2002
I love your site. Well as you probably know by now we
have just begun our work on the Foundation for the US.
Please give us a while and our site will be a whole lot
better. We are here to help anyone with Arachnoiditis,
anywhere. So if I or any of my staff can be of assistance
please let me know. Thank you. sincerely, FREDDIE LYTLE
PRESIDENT ARACHNOIDITIS FOUNDATION OF AMERICA(AFA)
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LINDA INGLETT 12/15/2002
Mike the page is beautiful, tell Jude Thanks, please give
me a call or send me your address for me to send you a
song. Then you can try to put a part of it on the page,
just enough so someone can hear it then maybe they will
order it. I am so mad at my congressman right now. I wish
you had a fax so I could send you his letter he wrote
me , which I asked him for help . Wait til you hear what
Ninds wrote, I need some advise on this to write back
Linda Inglett have a new grand baby boy...born
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Nancy 12/2/2002
Sorry Mike for not leaving a message last time. I have
been disabled for over 20yrs. I am only able to lie on
my side as sitting or standing for any length of time
is agony. I am lucky I can manage to shower and use the
toilet. My worst time is having a shower as the pain is
so bad. I am also lucky I was born with a good sense of
humour as laughing does make life worth living. I am now
73 yrs old and I will never let them touch my back again.
I hope that it is not too late for others though.
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Nancy 11/30/2002
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Kim Hilty 11/27/2002
great site.thank you.i am certain my mother has this after
botched epidural. she has had two back surgeries and other
epidurals but this last one was a killer and she has been
in severe,excruciating pain that is radiating through
her body for three months now since the day she had it.doctors
don't want to deal with it. ok, i've vented. thanks. kim,PA
USA
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Laura L. Whismore 11/12/2002
I have been diganosed with "Arachnoiditis" I
am tring to find any and as much information on this as
I can. I'm scart, I want to try to understand what is
happening to me.
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Cynthia Knott 11/8/2002
Had a look and feel encouraged. Thanks!! Cynthia
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charmiane poulton 11/1/2002
I'm in China, with an "attack" of arachnoiditis
from too many steps, and cant get any pain killers; these
lovely people just keep giving me herbal medicine, which
is like swatting a fly with holey hankie. What do I do?
Maybe I'll just fly home and give it all up, but what
a waste. But you know what its like, too much pain makes
anyone a very dull person.
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Tammie Hamilton 10/28/2002
I was diagnosed with this disease 1 year ago. I have had
2 back surgeries and numeral steroid injections, as well
as the mylogram injection. We are not sure which procedure
caused the problem. My neurologist is useless, he diagnosed
me, and just prescribed me 1 years worth of pain medication,
and said there is nothing more that could be done. I would
love any and all information possible regarding this disease.
I have a 5 year old son, and had wanted more children,
but the pain that I expie
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Shelley Attaway 10/23/2002
I was diagnosed on October 22,2002 with ARC. I am very
relieved that it has a name. They were fixing to do another
surgrey(I have had 6 this year).The good part is a don't
have to have another surgrey, bad part is the is no cure.
I would like any information you have on this subject.
Thank You, Shelley
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Gill 10/21/2002
Hi Everyone. I hope you are finding this wonderful site
Mike and Jude have put together educating. I have learnt
more from this fantastic guy in a year, than I have ever
learnt from the Medical Profession. I am just another
undiagnosed person waiting for the day someone tells me
this pain is not in my head. If there is anyone in the
UK that has been diagnosed with Arachnoiditis, I would
be very grateful to know, by Whom and Where. I would be
very grateful if you could e-mail me to let me know
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Debi Martinez 10/15/2002
I'm totally lost. I just received the "official"
diagnosis of arachnoiditis. In a way, it was a relief
that my symptoms really weren't in my head, but knowing
that my disease will progress and become potentially disabling
is something i cannot deal with. I'm an mother of 3 active
teenagers, I'm an RN, and I'm not ready to "give
up". But there are days I cannot even get out of
bed because of the pain. Now comes the difficult part
of explaining to my family the poor prognosis of this
disease. I'm
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Michael Howell Arachnoiditis.net 10/10/2002
Mike and Jude, Love the site and the information you provide.
I know that, with all of the work we are doing to fight
ARC, the time and effort are worth it even if we help
only one person. My prayer is that those that suffer as
we do find hope, love, friendship and the information
they seek in these pages. Keep up the good work! Michael
Howell, California, USA
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Kayte Clater 10/9/2002
Please, Please can someone tell me WHY IS IT THAT THIS
"HORRIFIC" CONDITION IS GIVEN LITTLE OR "NO"
CONSIDERATION IN THE USA ?????? THIS IS A "HUGE"
PROBLEM IN THE USA, AS WELL, AS THERE ARE MANY WHO HAVE
BEEN UNFORTUNATE ENOUGH TO END UP IN THIS PREDICAMENT,
IN LARGE PART, BECAUSE OF "BAD JUDGEMENT" OF
NEUROSURGEONS WHO TOOK THE OATH TO "FIRST,DO NO HARM!"
ANY SUGGESTIONS OUT THERE ????? KAYTE from KENTUCKY
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Derek CIAASA 10/8/2002
'I know that most men can seldom accept even the most
obvious truth if it would oblige them to admit the falsity
of conclusions which they proudly taught to others, and
which they have woven, thread by thread, into the fabric
of their lives'. (Source Unknown) Keep up the go work
from all of us in Australia. Rev up the bus Mike. Derek
AUSSIE REDBACK
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Jodi 10/6/2002
Hi, I just got diagnosed Fri. with arachnoiditis. I've
been having problems since May 01. I've had 3 back surgeries
and numerous epidural and block injections with no relief.
Finally someone told me what was going on. It was a shock
because I'm the breadwinner in our family, my husband
is retired/disabled he is on a pancreas transplant list,
doctors said if he doesn't get the transplant soon, he
will die. We also have an 8 yr old. It's very hard for
me to take care of everything but I have to. T
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Chaz 10/5/2002
Hi There, Thanks very much for all the hard work you have
put in to making this site available for sufferers like
me. Keep up the good work. Chaz
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Drew ChangingLINKS.com 9/23/2002
love your site! Do you know of some links with entertainment,
humor, fun? We link to sites with new information and
entertainment. please visit http://www.ChangingLINKS.com
suggest a site.
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David Davis 9/21/2002
Hello, Just trying to find more information about arachnoitis.
Ive had 38 needeles in my spine over the last 20 years.
thanks much David
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sara Bored? 9/15/2002
A very helpful and informative site. Thanks to all who
have made it possible.
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Paula Handley Paula Handley 8/2/2002
I have lived with back pain for as long as I can remember.
It is my whole back, not just one location. I have fibromyalagy,
and other problems as well. My sister-in-law alerted me
to this problem of arachnoiditis. I want more imformation
on what this is and why Doctors don't want to talk about
it. Thank you for any imformation you may submit. Paula
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Stephanie 6/27/2002
Thanks, Mike, for answering so soon. I wrote too much
and was abruptly stopped in mid-story. Don't know how
to continue in this venue. Any words of hope would be
appreciated from anyone. The bridge sometimes, looks very
tempting to me. Since I am not a good swimmer and am afraid
of hights,any strength that can be passed on to me, I
will gladly accept. Please, no mention of bridge in your
reply. It tends to upset my loved ones.
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Carole Ringham 6/25/2002
Hello Mike - An angel who I first spoke with in May of
2001. He has been an inspiration and a prophet. It is
thanks to Mike, Isabel and Carl that I now will not stand
for any non-sense when I get a diagnosis of Fibromyalgia
and I know that it was just to shut me up and get me out
of this so-called doctor's office. No more will I be misinformed.
Now I ask, what will it do, what are the side effects,
what are the success rates - then and only then will I
say NO. No way are you coming near my back with any needles.
Thanks Mike and Jude for being there for me. Mike don't
let the trouser leg fall out with you shoe again!! (See
Arachnoidits video - Fighting Back to see what I mean).
Sorry Mike had to get that one in. Love the site, may
it go from strength to strength
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Jacquie Douthwaite Jacqueline 6/23/2002
Thankyou so much Mike for all your help. I am more than
grateful for all the information and insight into this
terrible affliction. Instead of rumaging around in the
dark, you have helped point me in the right direction.
Thanks again - Jacqueline.
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Stephanie Albert 6/22/2002
I am a 60 year old married female, diagnosed with adhesive
arachnoiditis twelve years ago. I have had five mylograms
and three laminectomies. It was not until my fifth myleogram
twelve years ago, that I was told that I have arach. and
told bluntly that there was no hope of help for me, other
then pain medication. I am now on Morphine and Roxicet.
They no longer work and I am interested in learning about
pain relief. When first diagnosed, I delved into any information
available on this horri
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Marni Goulding 6/14/2002
I have been dealing with Adhesive Arachnoiditis for over
twelve years and it was just diagnosed two years ago.
Before I was diagnosed I was given no answers, no pain
relief and a lot of doctors telling me that it was all
in my head. I am grateful that more and more people are
becoming aware of this very misunderstood and under-treated
condition. We need to raise money for research and find
a cure! I really do believe that we can do it!
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Tracey Holden 6/10/2002
Hi, I am the press officer for The Arachnoiditis Trust
UK and I wanted to just say hello. I am going to try to
get the video advertised in local papers up and down the
country. Best wishes to all Tracey Holden
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roger radford 6/6/2002
God Bless, Mike. With you all the way. Best wishes Roger
Radford Ps I'd like to lift a couple of paras from your
site for my new novel, Informed Consent. Your eloquence
would suit one of the protagonists very well. Is that
okay, mate?
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Sallie Anthony Sallie 5/28/2002
I had a spinal fusion January 2001 and since then have
had a burning left foot and spasms in my leg. I have been
told I have sympathetic nerve mediated pain. I have seen
3 pain consultants and the last one thought that i may
have CRPS type 2 but as i don't have all the symtoms of
that I am not so sure. I have just heard about Arachnoiditis
and I wonder if this is what I have.
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lucy horobin 5/12/2002
hello mike we spoke on the phone last week!iwas diagnosed
in 1978 but was not told until 1995!the arachnoiditis
trust as been a life saver for me. it is amazing how many
are suffering with this evil disease.your storey is about
the same as mine.it is very demeaning how we are all treat
by the medical profession, anyone who wants to chat can
email me.
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CathieArceneaux 5/12/2002
Diagnosed with Arach and going to educate myself and my
primary physician since he does not seem to have any answers
for me.
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Tina Stapleton 4/23/2002
Just diagnosed in Feb-2002. Now what do I do?
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suzanne donny blue_for_uuk 4/19/2002
hi,i need help here im in a group from america that have
been great help but nothing from uk.have so much to ask
about any help here.i have sufferd now for more than 10
yrs with this pain,burning,cramps,you name it,im saw you
know.was with main manager been closed due to the n.h.s
cut.hope to hear and a little help would be great.thank
you .suzanne
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