On this site you can find about some of
our members. Photos with description how we got arachnoiditis and how
we live with it.
Some of our past
and present members, even with pain and hard way of living with all
body disabilities were very active in promoting arachnoiditis, informing
what it is, and how education is important to help people who already
have it. And also forr new generation what they should avoid never to
get this horrible spine condition.
In 1992, I had to do a little
surgery and decided for an epidural anaesthesia as the anaesthetist
told me that it was less dangerous!
After the recovery, I have never been the same: strange health problems
that my general practician cannot relate to anything, mainly spasms
in the pelvic area just as for having a baby, heavy headaches, nearly
close to migraines, fever without anything else back pain that made
me consult specialists and nothing was found as herniated disks or else
on the radios! For 6 weeks a problem with balance: when I got up in
the morning I was no more walking straight, even if in my head I was:
I had ears exams and nothing was found. Some months later, I fell on
the stairs, after work in my house, but except the normal pain, nothing
more happened. In the night, after having walked to the bathroom and
came back, in only one second, such a heavy pain began like a massive
attack at the bottom of the right leg but immediately going into my
whole body! I was no more able to breathe for never had such a pain!
I tried to take analgesic but it was not of any help. So I called for
emergency but as doctors were on strike, not a lot of people and they
told me to wait till my doctor is there. My husband decided to bring
me to a rheumatologist and I could no more walk so he had to hold me
(happily I am not weighting too much!) The rheumatologist had never
seen or heard about such symptoms: so she sent me to a neurologist because
I have lost knee and ankle reflexes! This one asked for scans and as
Tarlov's cysts were seen, he asked for a myelography and myeloscanner
with lumbar punction! After I had MRI done and surgery for Tarlov's
cysts on three of them for 7! And it remained the same as before: heavy
pain, leg weakness, headaches, and more and more pain and problems like
for bowels and bladder, and sexual life! I lost my job, my friends because
nobody could believe such a disease, or diseases for on the last MRI
after the second myelography done after the surgery, it was seen AA!
Nobody here in France was speaking at that time: 2002 about those health
problems! As I found sites in USA, I subscribed and saw how useful it
was to be a group and I decided to do one in French, a little one for
not a webmaster! And I have now 12 French speaking members, and a very
good neurosurgeon that is officially named for Tarlov's disease as well
for research, surgeries and teaching, but nothing for AA! Happily, we
also have International site for which i have done translations on French
and I have made a little part in mine about that site.
A friend of mine is going to help me to do a real site, not only a page
about!
I am a fighting and am positive one, even 58 years old! I have two sons
29 and 26 years old, and fighting everyday to be dressed and smiling
for my family for they are suffering as much as I am, but in another
way!
I have had hypnotherapy with a neurologist and this helped me to stay
sitting a little longer! I was walking for a little with a cane and
now I have to use a wheelchair! I am laying on my bed with some special
mattress! I had to change 7 times before finding one that is fitting!
I did the same with the cars for vibrations are hurting me a lot! And
for seats (my house is full of different kind for one day one is fitting
and the other another one). I don't go anymore in shops as it is too
difficult when I am surrounded with lot of people! So mainly I am staying
at home, laying on my bed or on a garden bed with my kitties: Vanilla
and Grisette.
I don't really know from what AA came on me: epidural anaesthesia or
myelographies and myeloscanners!
Now it's time for another position!
Warmest thoughts
Claudine
May 7, 2005
Hello Friends
I have had Arachnoiditis for many years
although I was not aware of it until I had an MRI in 2004. The radiologist
saw the clumping nerves. My journey started 30 years ago while I was
on duty as a nurse, after being injured at work, lifting a patient.
I underwent a discoidectomy, numerous myelograms which encompassed Ethiodan
oil based agent akin to Pantopaque. I also received numerous epidural
treatments over the past 30 years. Needless to say, that the neurogenic
pain has never subsided, as a matter of fact, it increased tremendously
the past 5 years. I did my best to ignore it and to keep on living a
somewhat normal life. As of today, I was successful in reopening my
worker compensation file. I am now entering the phase of battling with
them as to what needs they will have to fill and if I should reintegrate
the work force. It shall be a fight of a lifetime.
Today, this arachnoiditis finds me disabled.
I can no longer enjoy hiking, my last sport activity that I was able
to do. I am now in a wheelchair at times, some other times, I use a
walker or a cane. I can no longer sit at a computer like I used to while
I was working. My last work position was a claims agent for the Ministry
of Health and Long Term Care in Ontario. I enjoyed that work as the
main goal was to be able to assess the doctor's services and allow payments.
It had taken me 5 years to obtain this job. Within 5 months after winning
the competition I had to walk away due to the pain I was under.
I am now looking into making my surroundings
agreeable to my physical needs. I am a prisoner of my home because of
my inability to move around. I do not take opiates because of the fear
of addiction. I am tolerating the pain as much as I can.
I love this group because we are active
in bringing awareness. The active members are fine people, easy to get
along, loving.
Hope you sign up and enjoy our little group,
but be prepared to do some work
Have a good day
Louise
November 7, 2004
Hello Fellow Arach Friends,
My name is Jim Graff, I am 49 years old.
My wife, Debbie is my typist and caregiver. I have two grown children
from a previous marriage and 2 teenagers who are keeping us very busy
till they are old enough to drive themselves. Debbie’s grandmother,
Clara (94), is also living with us at the time of this writing.
Our family lives in Ruidoso, New Mexico
at an altitude of 7,000 ft above sea level. This was at suggestion from
a pain management specialist in Houston, Texas. We were living in the
Austin area at the time and I had received my second Spinal Cord Stimulator
(SCS) from this doctor. Since I was familiar with the Ruidoso area during
my last military days in El Paso, Texas, I was quick to test my wife
on her view of moving. She loved it and within 2 months we were out
of Texas.
My arachnoiditis was started with the shattering
of L5 during my time spent in the army during 1973. I have had too many
surgeries, too many myelograms and too my needles stuck in my spine
to try to make the pain go away. In 2003, Debbie started learning the
Internet. To our surprise, the doctors were treating me in a way that
was causing my pain to continue to increase.
In January of 2004, I took another bad
fall. Now with a SCS in the Lumbar and one in the Cervical, I just damaged
my Thoracic when the handrails came out of the public handicapped stall.
I flipped over my wheelchair and hit the brick wall.
In February, I had the lumbar SCS removed.
The plan was to install a Medtronic’s medication pump. The wire
leads going to the spine broke into and are just sitting in my back.
The doctor put the pump in anyways and took out a couple of broken facet
bones. I am now very unstable and have to rely completely on the future
of my motorized wheel chairs.
I am debating and discussing the need to
remove the cervical SCS and try to have a second pump installed in the
thoracic or cervical area. If the doctor wants to put a dual lead to
the SCS then I know from history that will only last so long before
I will have to have another surgery for the pain pump. I have had this
SCS since 1995 and it just isn’t covering the damaged area. The
lumbar medication is being blocked due to the scarring inside the spinal
canal.
This is my short version and I will probably
write more at another date.
Truly yours,
Jim Graff
Hi. My name is Jan and I am a 50 year old,
mother of 4 and grandmother of 3. I've been a widow since May of 2002
and since then I have been living in NC with my friend who also has
Adhesive Arachnoiditis. Together, we do the best we can living with
this disease.
I want to tell you a little bit about my
life since Adhesive Arachnoiditis has invaded my life…or what life it
has left me since I was diagnosed with this in the summer of 1992.
I no longer live what most people would
consider a "normal" life. Most people go to bed at night,
get up in the morning, fix breakfast for their families, get their children
off to school and then go about their day; whether it be to a job outside
the home or as a stay at home mother, cleaning house and doing the things
necessary to take care of their family. I can no longer do any of that
for my family.
I used to be a stay at home mom. I took
care of my family, I took care of my home, and I led a very productive
life. And then I was diagnosed with Adhesive Arachnoiditis, after I
had had a back surgery to repair a ruptured disc, for the third time.
It was this operation that aggravated the Arachnoiditis so severely
that I began having symptoms. And the symptoms were horrible. I had
non-stop, unrelenting pain in my legs that was so awful I could only
sit and sob for hours. I was unable to walk because of the pain. I couldn't
eat, I couldn't sleep, I could no longer take care of my family, my
home, or even myself. I was devastated. My life was in shambles and
all the doctors were telling me was that there was no cure for this
disease and nothing they could do for me, other than to treat my pain.
Life was horrible for me and for my loved ones. For months I sunk lower
and lower into depression because of all I had lost and mostly, because
of the non-stop, outrageous level of pain I was in.
I wish there was some way that I could
describe for you how horrible this pain is. My legs feel like there
is a fire raging on the insides of them. There is a dull ache that is
constantly there and every now and then there is a sharp, stabbing,
shooting pain that starts in my buttocks and shoots down the back of
my legs to my feet. Then the spasticity starts. This is when my body
begins to jerk, uncontrollably. This spasticity can last anywhere from
several minutes to as much as half an hour. And I never know when this
is going to hit. Some days I can walk, some days I my legs won't support
the weight of my body. On days when I can walk, I never know how long
that luxury will last. I can be walking along, almost normally and then
all of a sudden, my legs just decide, like they have a mind of their
own, to just quit. I can be standing one minute and be on the floor
the next with no warning.
A good night's sleep is something that
I have not had in more years than I can remember. I am usually able
to sleep only a couple of hours at best; usually it is muscle spasms,
charley horses in my legs, or just horrible pain that wakes me up. Before
my husband died, he would wake up many nights and come looking for me,
only to find me sitting in the bathtub in hot water. Wet heat seems
to help muscle spasms and so I spend many hours in the bathtub. To say
that I have slept there would not be an exaggeration.
To have some semblance of a normal life
I decided to begin narcotic drug therapy. The pain killers I take now
are what most would consider a ridiculous amount. Years ago, I would
have considered the drugs I take today a ridiculous amount, but if I
take less, I cannot stand the constant pain. Because of this I am not
accepted by many of my family members and some of my friends. Some of
them, instead of learning about Arachnoiditis, have just decided that
I like taking drugs.
These days, I share a home with my friend
who is here with me, Nancy. Nancy also has severe Adhesive Arachnoiditis
and so each of us knows what the other one is going through at all times.
My youngest child, my 12 year old son, also lives with us. Either Nancy
or I get up with him in the mornings to see him off to school. There
is no more fixing breakfast as he learned several years ago how to fend
for himself. After he leaves for school there is no more of Mom jumping
in the shower, getting dressed and beginning the day cleaning house.
I am no longer able to keep house like I would like to. Simple household
tasks like vacuuming, sweeping, mopping, bed changing and the other
things I used to do to take care of my home are now impossible for me.
I can't even stand at the stove in the evenings long enough to cook
a decent supper for him. My child lives off of frozen dinners and sandwiches.
I have grandchildren that I am not able
to see or be a part of their lives. They live in another state and traveling
is out of the question on a regular basis. I would gladly endure the
pain to get to them, but because I am unable to work and make a living,
I don't have the money to visit my grandchildren. Social Security Disability
does not allow me that luxury.
What did I do to contract Adhesive Arachnoiditis?
What did I do to deserve this life? Very simply, I made the stupid mistake,
when I was 21 years old, to trust what my doctor told me. When he told
me that the dye he was going to shoot into my spinal cord so that he
could see the ruptured disc I had better, would not hurt me and would
be absorbed into my body and then come out when I went to the bathroom,
I believed him. What I have learned in the past 10 years has taught
me that he more than likely knew then that he was telling me a lie.
I was not given the courtesy of INFORMED CONSENT.
Arachnoiditis is a disease that doctors
have known about for many, many years and yet some behave as to know
nothing about it. The medical profession knows full well that this disease
is contracted, most of the time, from the dye used in Myelograms. They
also know that this dye MUST be taken back out, yet they do not do it.
I even asked, as young and unknowledgeable as I was at 21 years of age,
if he should take the dye out! He assured me that this dye would be
gone in a matter of weeks. But two years later, when the same disc ruptured
on the other side and this same doctor needed another Myelogram, he
didn't have to use any dye because the dye from the first Myelogram
was STILL IN MY SPINE!! That should have sent up a red flag for me then.
Sadly, I was stupid and because of what I was going through at that
time, I missed it. In fact, today, nearly 30 years after that first
Myelogram, that original dye still shows on every x-ray or MRI that
I have done.
I am angry. I am scared. I am frustrated.
I have had years of doctors thinking that I am a drug seeker. I have
had too many nurses in doctor's offices making judgments about me when
I go to the office and they look at my chart and see the amount of pain
meds I am taking and I have had too many years of unrelenting pain.
I live in fear that my doctor is going to retire and I am going to have
to find another one. I fear losing Medicaid and not being able to buy
the meds I need. I am angry at the life my child has been forced to
lead because of the condition I am in. The first sentence this child
ever made was, "Mommy does you legs hurt?" Most mothers get
excited when their child puts words together to form a sentence. I was
terribly upset that those were the words he chose to put together.
Ladies and Gentlemen, what I am telling
you is that I am tired. I am so tired of living like this that some
days I think that me and everyone around me would be so much better
off if I were just not here. I remember thinking when my husband died,
that my children had lost the wrong parent. He had a heart problem but
at least he was functional. I have thought seriously about giving custody
of my 12 year old to my oldest daughter just so he could have a shot
at a better life. But he does not want to leave me and honestly, I don't
want to live without him. In so many ways he is all I have. But he deserves
so much more, so much better than what he has in a mother. I am not
able to run him around to different activities after school, I am not
able to get outside and throw a football with him. Some days I wonder
exactly what good I am to him. But then some days I wonder what good
I am to anyone.
There is no research being done on this
disease. The procedures that gave me and so many others this horrible
life sentence of uselessness are still being done. Women have epidurals
for childbirth everyday and not one of them is told that Adhesive Arachnoiditis
might very well be in their future. Myelograms are still being done
and Epidural Steroid Injections are at an all time high.
Sadly, my story is not unique. There are
tens of thousands of people in the world who are just like me and worse.
And nothing is being done for us. We have no hope on the horizon. Our
doctors tell us, the ones that believe in us, that is, that we have
to "learn to live with it." Who can learn to live with pain
like this? And why should any of us have too? How many more people are
going to have to suffer before something is done about this atrocity?
Is it going to take a Christopher Reeve or a Michael J. Fox before the
other people with this disease get any hope?
I could go on for hours and hours on this
soap box, commentating about the horrors of Arachnoiditis and the unfairness
of the medical profession, I have grown that passionate about it. However,
this is not the place for it, nor is it my goal here. But I do pray
that someday, somewhere, someone is able to step forward and put a stop
to some of this injustice once and for all; especially for those tiniest
victims of this disease who cannot speak for themselves. Informed Consent
is a must in this country and I pray that I live long enough to see
it happen.
Until then I will continue to live each
day the best way that I can, be the best me I can be, devote myself
as much to my family and friends as I possibly can and be as independent
as this disease will allow me to be for as long as it will allow me
to be. One day at a time is about all any of us can ask for. I just
pray my one days are many.
Thanks for reading my story. I hope you
have enjoyed getting to now a little bit about me and this awful disease
and how I live with it.
Jan Cooley
Sanford, N Carolina
| Sejla, Bosnia and Herzegovina |
|
Sunset from my balcony
June 2005
Hello!
I am 35, from Sarajevo in Bosnia and Herzegovina.
I had discus hernia L5-S1 and bulging of disc L4-L5. My serious problems
with spine started in November 2000 and became worse in January 2001
when I got Epidural Steroid injection. Doctor never warned me about
possible consequences, and when I was refusing injection he was telling
that is the only cure for discus hernia. Finally I trusted him and unfortunately
allowed that injection.
After that I could not sit even for a minute and could walk just to
the bathroom, which is around 3-4 meters far from my room. Then after
5 months I started with more walking, exercising and my condition was
improving slowly. Weekly I would be able to be few minutes longer on
legs and to sit few minutes.
Then rainy days and not know what else,
my condition again became worse. I could not sit, could walk just few
steps.
My first surgery was in December 2001.
After surgery my condition was improving every day. More walking and
more sitting for me every day. But in my best days after first surgery
I could sit just a short and after 1-2 hours of staying, walking and
sitting alternately had to go to bed and rest my spine. If I did not
follow my body, then condition would become worse and brought me back
to condition how it was some months or more ago. Then I had to start
again with slowly improving to come to the condition how it was before.
I was happy that could go out for a walk, but never could start again
with working..
Again, in August 2002, after lot of rainy days and some floods in neighborhood
countries and picking up some food which wasn’t so heavy (around
2 kilos) but in that rainy days my spine couldn’t get even that
much, again I was back to bed all days and nights. Again I could not
sit, walked just few steps for 1-2 minutes. Could not sleep from burning
pain. Had hallucinations and if that kind of pain was lasting more then
few months I would not be alive till today.
For the second time I was trying all kind of medical and alternative
therapies. Exercises I could not do because they were causing much more
pain and new hurt of spine.. I tried with bioenergy therapy, homeopathy
and many other unconventional medicine methods.. Nothing helped.
When I gone for MRI, radiologist saw scaring
and that was written in my diagnose.. like postoperative scaring, like
its nothing serious.. and like that is nothing at all..
I went for my second surgery in June 2003 to Zagreb.. Neurosurgeon diagnosed
me with arachnitis radicis S1 I.dex. When I was reading his report
I would skip this word. Neurosurgeon mentioned nothing about arachnoiditis
to me.
Other doctor before my second surgery wrote
in discharge letter, after therapies which I had in hospital, diagnose:
adhesiones intraspinalis.
With help of my closest friend who was
always asking me, ok, and what is your diagnose? And after many times
he asked, then only I started to go back to my medical papers and type
these all words in google search.
After that other surgery I started to recover
slowly, but unfortunately improvement stopped. During these 4 years,
in hospitals, spa and ambulant therapies I never met anyone in pain
like I am.
And with that kind of burning pain, different
kind of sensations in whole body.. Before these support groups I was
feeling so alone in this world, with everyday trying to explain to doctors,
to people who know someone who had surgery for discus hernia and now
is well .... to friends who also had many advises without knowing anything
about this kind of back pain....
I have pain along both legs, groin pain,
can’t sit, just when getting up for few seconds. I can walk for
around 15 to 20 minutes, sometimes just 10 minutes or less, and then
have to rest in bed for around 1,5 hour.
The only therapy which is helping me is
swimming and light exercises in water. All others making me more problems.
I should not mention not understanding
and not giving right therapies and directions from some doctors and
therapists.. I had to do and research all by myself. Sometimes have
to fight with therapists who are not informed enough to prove that I
can't do something what they think that I should. Just one wrong movement
and I would be again on surgery. That is definetly not my wish.
The most of the time daily I am spending with laptop, then reading books
and listening some relaxing music. Lately we got Cable TV and always
something interesting to see..
French
Bosnian