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Patient's letters
to IOM before Conference
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ALEX
Dear IOM:
I am one of anywhere between thousands and hundreds of thousands of
spine injury patients in this country with a seldom known, little researched
disorder called Failed Back Surgery Syndrome. It is also known, in its
chemical meningitis form, as adhesive arachnoiditis. There is no cure
for it, no research that I have been able to ascertain, in 2 years time,
ad little or not treatment for it. I have stage III, which is lingo
for advanced, unbearable agony, especially in winter weather, when survival
is the most we can hope for.
It (arachnoiditis) is a radical assault
on the spinal cord and brain, and results in near suicide level pain,
paralysis, or worse, for a large number of us. A number of us on the
online support nets, have tried to do tracking research, where we try
and find spine researchers, and attempt to generate some interest in
researching a cure for this condition, but we continually come up empty.
There is more information available on this disorder at the following
URLs.
Would you, could you, please consider research
into this absolutely devastating condition? So many organizations choose
not to include it or research it, because it is iatrogenic. I submit
that is all the more reason to find a cure for it.
Thank you for your time and interest. URL
links with details below.
Sincerely,
Alex
http://burtonreport.com/InfSpinal/AdhesArachAnatomy.htm
http://www.arachnoiditis.com/book.asp
http://cofwa.org/AASYNDROME-10-03.pdf
JANICE
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I suffer from Arachnoiditis. I belong to
a group of 1200 people who have this debilitating disease and I would
like to say to you a few things about us and our lives. I am 54 years
old but I have had serious back problems since I was 21. One day I was
the happy mother of 2 young children and the next day I was in a hospital
in traction alone and terrified about what was happening to me. Back
then there was no MRI or CT scans. The doctors did not know what to
do with me I had not been in an accident to hurt my back they were stumped
and they did every test imaginable except the myelogram which they said
was dangerous. In the meantime I became pregnant again and spent most
of my time I a wheelchair scared to death and in more pain that I had
ever thought possible. I took no pain killers while I was pregnant and
it was pure hell to say the least. After the birth I got worse and the
decision to do the myelogram was set. I had the test at 6 one evening
and at 6 the next morning I was in surgery with a ruptured disc. The
myelogram was the oil based stuff that I am sure brought this disease.
After the first surgery in 1973 I had 4 more over the years and finally
in 2002 I was told I had arachnoiditis. I had never hearth the word
before much less knew what it meant. When I got home from the doctor
that day I went to my computer and what I read could have been written
about me. The pain in the legs and the back and the symptoms describing
bladder, bowels problems described me to a tee. Why had the doctors
not recognizes these signs and looked for the disease earlier. I learned
it did not matter because one the disease progresses it never regresses.
I was shocked to learn that my pain cold and out get much worse. I found
myself looking for a pain doctor. I found on e who treatment like trash,
I was to be hidden like something ugly. In California, I was treated
like a drug addict from the doctors. I left in tears. I finally found
a good compassionate doctor who understood Arachnoiditis and Cauda Equina
syndrome both of which I have. I was put on narcotics and muscle relaxers.
This doctor gave me back my life. By this time all my children were
grown and I could see no purpose in being in this body any longer but
this doctor made me see that because I had a disease likened to terminal
cancer without the benefit of death and all I could think of was dying
to end the pain. But his wonderful man showed me that I didn’t have
to suffer this hideous pain every minute of every day for the rest of
my life. If doctors learn anything they must learn to listen and evaluate
patients based on their history. I had been suffering for way to many
years and I could only see one way out. Now my life is fuller than ever
and I am once again enjoying life and some of the simple things we take
for granted daily. Please continue with the research and find a way
to prevent this scar tissue from forming after surgeries and injuries
to our backs. Don’t ever quit. I believe that someday when a doctor
performs back or neck or brain surgery they will be able to bathe the
nerves in chemicals that will stop scar tissue from forming therefore
no more arachnoiditis and in time it can completely be eradicated from
the population and there won’t be any need for groups like the one I
am in. What a wonderful day that would be. I also believe that there
are tests that can be done that are safer than the myelogram and the
need for ESI's should be halted in this country immediately. All the
chemicals that are put into our fragile spines is akin to pouring week
killer on a beautiful lawn. It will kill everything not just the weeds.
Thank you for taking the time to let me vent a little and beg you to
understand where myself and many others are coming from.
JJAMES
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Thank you for the opportunity to share
with you, the last 30 years of my spinal cord injury. This is the spinal
injury type known as chemically induced adhesive arachnoiditis. Doctors
had been told advised by the radiologist report in 1978, without explanation
to the cause and life changing effect being disclosed to me. No till
I educated myself through the many resources available on internet in
2003, did I learn what was causing my rapid decline.
For years, as a disabled veteran, I have
been subjected to every type of medical procedure to fix what is unfixable.
What is unfixable is the chronic, severe pain of existence. Injured
spinal cords are the type that get you labeled by the medical world
as "drug seeking". I've been seen by psychiatrist who report
back to the primary care physician that your physical pain relates to
some suppressed childhood trauma, without ever considering the possibility
of physical causes.
I have undergone three hospital pain management
clinics. These clinics only assist to traumatize the already damaged
spinal cord when trying to force a patient to push beyond their limits.
The mental acceptance, proper diet and biofeedback are the useful tools
used when a patient leaves a clinic and returns to a real life.
Many of my surgeries were required to stabilize
and fuse the vertebras. I am currently receiving more pain relief from
a medication pump, with a unstable spine, degenerative disc disease
and spinal stenosis than I ever did after the many surgical procedures.
Because of cervical injuries I use a spinal cord stimulators to reduce
the pain from the degenerative discs that effect both arms.
A a veteran, I have seen many physician's
assistants in Veterans Hospitals ad emergency rooms, most have never
been trained to think that there are errors and surgical accidents in
the medical field. These accidents and medical procedures are the cause
of advancing arachnoiditis. Surgical intervention to relieve pain should
not be considered after a diagnosis of arachnoiditis, except in rare
cases when surgery out weights the future health of the patient.
Arachnoiditis sufferers are subjected to
inconclusive tests. When a radiologist gives a report, the medical world
should be able to understand the terminology. Instead, we are told that
Arachnoiditis is not a condition or disease, but a radiological term.
The surgeon schedules a surgery that is suppose to fix the pain, as
the surgeon have given the patient a diagnosis of "Failed Back
Surgery Syndrome". When in fact, another surgery creates more pain.
More neurological malfunctions because more blood has been spilled on
nerves as the dura becomes easily damaged. More scar tissue has been
attempted to be removed, thus cutting through more nerves and new growth
of new scar tissue will always replace the old. Many doctors view the
FBSS as the patients fault, thus they can repair what the patient did
not take care of. When the patient continues to have pain after another
surgery, they see another doctors opinion. This begins the cycle of
more tests thus advancing the stages of Arachnoiditis.
The pain of Adhesive Arachnoiditis comes from the nerves inside the
spinal cord. These nerves have been damaged from all the myelograms,
misplacement of Epidural Steroid Injections needles and spinal surgical
equipment that has damaged the dura and thus the need for blood patches
to stop the spinal fluids from leaking. The damage is also caused from
hospitals that mismanage the storage of those chemicals used for intrathecal
and non intrathecal use. The FDA has fixed the labeling but the medical
field has not changed their safety procedures.
There is no cure for Arachnoiditis. When
properly diagnosed with the explanation of the disease, the patient
can come to terms with their new life. Seeking a cure is not in the
patients best interest. The cycle of mourning the past life and to begin
a new life is a necessary step in the process. This rare disease is
not terminal or curable, thus the patient needs to be treated with respect
and dignity. The patient didn't cause the disease, the medical professionals
are the cause and under educated as to how to treat. One year on the
internet gave me more knowledge than 29 years of talking to doctors,
surgeons, pain specialist and psychiatrist. I personally believe that
this lack of information to the patient is done to protect the medical
profession, not the patient.
My request is to prevent further cases
and knowledge to the current and future medical fields as to the cuase
and effects of this disease. Arachnoiditis needs to be an accepted rare
disease, with an ICD-9 code that has a referral of care written in the
medical physician desk reference. Labeling of patients must be removed
and the complaint of pain be truly accepted and treated. Only then can
the patient prevent further damage by seeking help from untrained professionals.
This is an account of my life, with all
the details of the many surgeries left out. Limitations are many.
James
GERRY
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Hello Kathleen,
I'm writing to you today to express my dismay at the lack of knowledge
by Drs., Radiologists, Neurologists and likely the majority of spinal
surgeons in the US, as well. It's extremely hard for me to understand
how or why Arachnoiditis is such an unknown in this day and age of information
dispersal at the press of a button.
I developed Cerebral Arachnoiditis as the
result of an infection in my brain due to shunt surgery, when I had
a Craniotomy to remove a Cavernous Angioma in 98. It took me 5 and a
half years to identify the cause of the ruthless, daily pains in my
head. I can't begin to tell you of the difficulties I have had, while
striving to overcome the disability of having had brain surgery while
fighting chronic pain on a daily basis. If ever there was a double ????
whammy ?????, it's having to live with an Acquired Brain Injury and
Cerebral Arachnoiditis with it's intolerable pains.
Please do all you can make the medical
establishment aware of our plight, and the importance of ????? b ????
pain management, without being made to feel like we are drug seekers
or the like. Our lives are tough enough as they are.
Thank you for your time and efforts on
our behalf.
Take Care,
Gerry
HANK
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My name is Hank I'm a 67 yr.
old retired chiropractor. In 1981 I was hit by a car whilst putting
chains on my car on a mountain pass. Since then, I've had four low back
surgeries including a anterior and posterior entry fusion in 1999 w/hardware.
Last surx. was a discectomy / laminectomy at L3-4 in 2002. During that
surx. the surgeon 'nicked' the dura while trying to 'tease' some scar
tissue from the dura resulting from a previous surx. Apparently blood
got into the epidural space creating even more scarring. Since then,
I've had at least six epidural injections w/little or no help in order
to try to relieves the intractable pain radiating from my right lumbar
region into the buttocks and down the I-T band to, and around my right
knee. My quadriceps are atrophying. I walk w/ a cane and can stand for
no longer then ten minutes due to excruciating pain and weakness. I
have urinary incontinence and wear 'Depend' pads 24/7. Six months ago,
after a lumbar C-T myelogram, I was dx. w/ arachnoiditis and told that
there is no cure available. I've had trials w/ a s.c.s. and morphine
pump. The s.c.s. did help mask about 45% of the leg pain w/ o relief
to the l.b.p. The morphine pump gave tremendous relief. However, it
shut down my bladder. I am presently consulting w/ a urologist to see
if that can be helped w/ medication. If not, I'm told that I will look
forward to a life time of self cathetarization. I have seen physical
therapists and chiropractors which afford me mild temporary relief,
and am undergoing pool therapy 2-3 times per week, which at least keeps
my muscles slightly toned. Also, am seeing a psychologist to help w/
the tremendous bouts of depression and suicide ideation.
It is my prayer that this information will
be helpful to you in obtaining govt. financing to investigate arachnoiditis,
and hopefully discover a treatment or cure for this horrible, painfully
disabling condition.
Sincerely,
Hank
SUSAN AND MICHAEL
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Hello,
My name is Susan. I am writing to you on behalf of myself and my husband
Michael. Unfortunately, we couldn't be there, although we would have
loved to have been.
Michael. and I have both been diagnosed with FBSS/ARC. M. is 40, and
I am 39. We have 3 sons, ages 15, 13 and 11. Neither of us is able to
work any longer. We are both suffering greatly on a daily basis. I have
an implanted drug pump, but my Dr has it filled with nothing but normal
saline now because he didn't feel I was benefiting from it. I personally
feel that he was not aggressive enough with it, as the dosage and concentration
I was given were very low compared to others I have spoken to, which
have been many. So, Michael and I are both currently taking Methadone,
which as you can imagine, leaves us both very drowsy all the time. Not
a good thing when you have kids outside playing.
But the most important thing is the PAIN.
I am sure you are hearing this from every sufferer that is speaking
and/or writing. There just aren't words to convey what it is like to
live with this, and to know that there is no end in sight. If we didn't
have our kids, I am certain we would be gone.
Please, please, please continue to research,
do more research than is being done. Why don't any Drs know about this
disease? Why can we not get adequate treatment? Why can we not get adequate
pain medication? Why can we not even find a Dr that knows the word Arachnoiditis?
Don't forget about us. Don't allow us to
suffer needlessly. There are so many more complex diseases and such
that are being treated successfully. Please help us. This disease is
reaching epidemic rates. And noone will help us.
Thank you for your time and consideration.
Hello Kathleen,
My name is Susan. I had previously written you a letter for consideration
for the upcoming seminar on ARC/FBSS, but have since had time to think
and have thought of so many things I wish I had said. I figured I would
take the time and write you again, and if my second letter got through,
wonderful.. If not, at least I tried.
There are so very many aspects of this
disease that I failed to mention as it affects us all somewhat the same,
and somewhat differently. As I told you previously, my husband and I
both have Arachnoiditis, and we both suffer from many of the same symptoms
and also from many different.
One of the most important reasons I wanted
to write you again was that I failed to mention one of the worst parts
of this disease that my husband has to endure. He suffered a tear to
the dura during a myelogram and had two spinal surgeries. He has an
awful lot of scar tissue in the lower lumbar range of his spine. About
three weeks after his second spinal surgery, he began suffering from
headaches which have gotten more intense and more frequent over the
past two years since the surgery. The headaches are now so violent that
he vomits and is so ill, and there is absolutely nothing that works
to soothe the pain (that we know of) except for the passage of time.
He has to lay and endure this until it passes which usually takes anywhere
from four to seven hours. We have been told that this is caused by the
scar tissue blocking the flow of the cerebrospinal fluid and causing
it to back up into his brain. This causes an enormous amount of pressure
which is what causes the violent headaches. We have yet to find a Dr
that is willing to treat his headaches, because his back injury is work
related and even though Workers Comp is willing to pay the bill, no
Dr will accept their money. So he suffers with no end in sight.
This, of course, leads to a terrible depression. Now, we have two parents
depressed. This is so unfair. If there were not drug addicts on the
street, perhaps we could get better pain management. But we have to
be viewed as drug seekers, because we are suffering 24/7. And our Drs
would have us believe that their hands are tied.
How long can we be the silent sufferers?
How long must be the wounded warriors? I belong to a support group so
I know many people with this disease, and every one of us can say without
question, that a Dr gave us this disease. Is there nothing that can
be done about this? I shudder to think about the people that are being
damaged every day, passinly in the very Pain Clinics that we all go
to.
Please make sure our voices are heard.
We all know that we have no hope. We all know that there is no cure
for us. We all know that our life expectancy is already cut short because
of chronic suffering and taking pain meds, but for those that come after
us, please make sure that they don't die because of a back injection.
We all have to leave our children early, and maybe never see our grandkids
because we listened to and trusted our Drs. I let my Dr operate on my
back so now I am going to die, because he tore my dura. Where is the
sense in that?
As long as we have to lie with their mistakes,
let us live with a little dignity. Don't make us live the rest of our
lives out, spending every day wishing it were our last because we are
in so much pain. At the very least, give us adequate pain relief. Treat
us as if we are terminal cancer patients. Some wise Dr once said that
we are the most unlucky because we suffer just as much as an end-stage
cancer patient, without the sweet relief of death.
I sincerely hope that this is my last writing.
If I could do the physically of it, I would pound the pavement every
day, trying to find someone to hear our plight. Thank you so much for
giving us this forum to speak. It means so much to those of us, that
only say these things inside of our heads, day after day, after day.
Sincerely,
Susan
also on behalf of my husband Michael
we are both sufferers
CINTHYA
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Dear Convener,
I would very much like to make this point to the meeting I believe is
shortly to be held. It is about education of medical students.
Arachnoiditis - Education and Prevention
is Better than Cure.
Since developing arachnoiditis as a result
of a simple and safe form of treatment for low back pain, I find there
is neither cure nor any effective treatment. I would dearly love to
return to the relatively pain free condition of the simple disc prolapse
I had before treatment.
I have discovered that few medical practitioners
understand the nature of the disease. Information about iatrogenic conditions
does not appear to be part of medical training, so that few doctors
are able to recognize the symptoms. It often takes the patient many
years to discover what has happened to them.
I am sure that many patients would ask
that this condition come under the umbrella of spinal injury. Unless
it is included in a medical student's training program and unless students
are trained to recognize the symptoms, it has unlikely that those who
practice epidural and spinal injection will ever accept that their skills
should be practiced with great care.
It is also imperative that any drug likely
to be administered by epidural or intrathecal route should be thoroughly
investigated for any special toxicity to spinal tissue before a license
is granted.
Cynthia
SHEILA
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Hello, I am 35 years old, mathematical
engineer, from Sarajevo, Bosnia and Herzegovina.
I am diagnosed with Arachnoiditis last
year, after my second surgery in June 2003. Most probably cause of Arachnoiditis
in my case is Epidural Steroid Injection which I got for discus hernia
pain, on L5S1 level. After that injection which I got in January 2001,
I could not sit anymore and my spine never could recover. Only I had
better period after first surgery and now again little better after
second. My intention is to describe my condition and living with Arachnoiditis.
I am not able to work for 4 years. My life
is limited on my flat. I can't walk out, and can't go out in wheelchair
because I am not able to sit.
Before this condition my body was in very good healthy condition. But
4 years in bed making me every day more weak. I started to have very
bad stomach problems which making pressure on my heart. I am eating
in bed laying. Then digestion become every day harder.
Walking for me is possible only for 15 minutes and then have to rest
in bed for 1 to 1,5 hour. I can go downstairs or upstairs only one floor,
and I am lucky that we have elevator in building where live. Then it
is possible to go for therapies and to doctors.
I am totally depended on help of others
because I can't go for shop and I can't do basic things which are needed
just for eating. Not mentioning cleaning and other things which are
impossible for me these last 4 years.
I can't lift anything what is more heavy than 1 kilo.
I can't bend my body, not for I little,
and I can't go on knees to take something from floor if dropped.
There are many more things which I can't
do with this condition but its hard to remember all because they became
my style of living, and can't see them like something strange anymore.
But to say in short, any simple daily thing which is normal for others,
for me, with this spine condition is really big daily task to do.
What is included in that, many things, cooking, washing, having a shower,
walking, sitting, sex, shopping, driving, working, not to mention dancing,
traveling, helping others... and here dreams starting..
I just hope that research about spine will
bring results one day, and young people with condition like mine will
have their chance to pass all richness of life.
Doctors education and information about
dangers of some medical procedures and education how to treat Arachnoiditis
can tremendously help in decreasing of unnecessary suffering.
But still staying hope that one day some
cure will be find..
Thanks for the chance to tell my story.
Sheila
BETSY
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My name is Betsy, I am 45 years old. I
have been living with back problems since 1984. I first showed symptoms
of AA in 1993, but I was not given a definitive diagnosis until 2001.
I believe that my AA was caused by myelograms in 1983 that caused a
dural tear and I had spinal fluid leak for 2 months until the surgeon
decided to proceed with a laminectomy in the spine it would stop the
spinal fluid leak. I had a laminectomy in 1983 (L3-5) that failed due
to so much scar tissue;and another fusion L2-L5) with Harrington rods
and screws. My fusion is solid and my back is table, but I live with
the chronic pain from AA.
The difficulty of this disease is that
the diagnostic procedures and medical surgeries used to treat back problems
( I had 5 myelograms, 4 epidurals injections) are the exact procedures
that precipitate AA. I realise that these procedures are necessary as
diagnostic tools and viable treatments for back problems. Having worked
in the medical field as an RN, my concern is that not enough education
has focused on the risks of these procedures and when these procedures
and treatments no longer become alternatives in treating chronic pain.
As for myself, I live with chronic pain.
On a scale 1-10 it is usually a seven, but this is normal for me. When
I have a flare-up it easily becomes a 13+. Most of my pain is nerve
pain. I have nerve pain through my thoracic region and into my groin
and rectal areas and down both legs in to my feet. The signals of nerve
pain to my brain got so bad that I could not tolerate anything touching
me. The elastic on undergarments hurt, heavy weighed or tight fitting
clothes were unbearable, bras were intolerable, socks and shoes were
too constricting. Moreover, just sitting in a chair or the pressure
of the back of a car sear against my back became unbearable. I went
through 4 different mattresses in 11 years-air mattress, egg crate,
and kingsdown soft mattresses. I spent over $7,000 in bedding alone
to try to get comfortable. The best way to describe the nerve pain is:
it feels like your skin as 3 times too small for your muscles so there
is constant pressure on the muscles and bones and it causes a constant
electrical current and burning sensation under the skin that will not
stop. Add yet, on the outside it is like you have diabetic neuropathy,
I have hit my legs to the point where they are bleeding or so bruised
it looks I was beaten and I do not bruise, So on the outside it is like
your shop up with novacaine, but the inside is wired to an electrical
outlet.
It took my doctor and I three years to
find a med regime that helps, We tried over 20 meds before the right
combination was found. I was lucky to have a doctor that listened to
me and was willing to keep working with me to try to find relief. I
take Effexor XR 37.5mg 1 X day for nerve pain in the truck area; Zanaflex
4mg 1-2 X day for nerve pain in the legs. Valium 5mg 1Xday for muscle
spasms in the lumbar region, Flexeril 10mg prn for cervical spasms (had
cervical fusion C4-C6 in 2001 for separate injury, but it did help restabilize
my spine) and Vicodin 500 mg prn for pain. I try to take as few meds
as possible. The meds have helped me return to work after a 15 year
absence. I was not able to sit or stand long enough to work prior to
the cervical fusion and the meds.
My AA is mainly in the lower lumbar and
cauda equina area so I have a great deal of groin and rectum pain. I
have had bladder dysfunction periodically. Because of the groin ain
I have not been sexually active since 1993. fortunately I have a very
understanding husband. AA is a difficult disease in that one minute
you are okay and five minutes later you are in a full blown flare-up
pain 13+, unable to concentrate, walk, or even converse. All you want
to do is lie down. The gravitational pressure is too much standing or
sitting. These flares can last from days to weeks. For me the pain eventually
becomes so intense I will pass out from the pain. I don’t take pain
meds because they do not relieve the pain of AA.
My AA is also greatly impacted by quick
changes in barometric pressure. I can tell when the barometer drips
below 30 on any given day. It causes more internal pressure on the nerves
that is already there. Moreover, my internal thermostat has been altered
by AA. I cannot tolerate temps below 48 degrees. Once it drops below
this temp I cannot get warm. Also, AA has altered my propprioceotion
and nerve conduction. When I work out in the gym it takes to sets to
get the muscles to work and even then I cannot feel the muscles working.
I do not have the sense of muscles contracting when I lift weights so
I have to be careful I do not overdue it and get hurt.
AA has affected my body, my sexual life
with my husband and social life with my friends, Moreover, I did not
work for 15 years due to back problems and AA, so it has been difficult
financially as well. Housework is very difficult. I have had to let
things go. I do what I can and have to accept that. Moreover, it has
altered my husband’s dreams and life and it has impacted my family and
friends.
I continue to try to fight against this
disease. Currently, by using my meds correctly and working out in a
gym 6 days a week to produce endorphine I am working full-time. It is
the first time in 15 years. However, I have no idea how long this will
last. There are many days I come home exhausted and need the weekend
just to recover from the week. Fatigue is a big problem with AA.
Many people suffer from AA worse that myself,
but AA has had a huge impact on my life and I believe it is worth trying
to better educate the medical profession in an effort to reduce the
number of patients that develop AA, especially women that develop AA
form Epidurals during childbirth and never have had back problems.
Thank you for letting me share my story.
