MY STORY
A SLOW-ONSET TETANUS VACCINE REACTION
AND FILING FOR THE NATIONAL
CHILDHOOD VACCINE COMPENSATION PROGRAM
By Jan DeGrandchamp
It was a beautiful fall day, the Friday after Thanksgiving 2000, and the
holiday was very enjoyable. A few months earlier, I moved to a small town
in California to be closer to my family. I started a new job and purchased
a small cabin. Most of my weekends were spent camping, hiking, working on
my house, or volunteering at the local animal shelter. At age 54, I was
very active and healthy. My hobbies included singing, dancing, and cooking.
I was scheduled for an annual physical examination with a new doctor. When
I arrived for my physical, my name was not on the schedule. Because I had
my appointment card with me, they offered to "squeeze" me in-sadly, I
agreed. Then I had the fastest, high-speed, 15-minute physical I have ever
had in my entire life. The doctor barely touched me. During a previous
appointment, the Physician's Assistant (PA) suggested that I have a Tetanus
Td vaccine. I had an infection at the time and felt I should wait until my
annual examination. The PA suggested I have a Tetanus shot because I
couldn't remember when I had the last one, and they were advised for people
who lived in rural areas.
During the physical, we revisited the PA's recommendation of a Tetanus
vaccine and the doctor stated emphatically that I should have one. I
didn't realize that she was simply selling me a product, very much like
cosmetics, rather than caring about my health. She knew that I had a
recent infection and that my father had passed away two months earlier.
The possibility that I could be physically susceptible to any toxic
substance should have been apparent. I had not stepped on a nail, cut
myself, or done anything to warrant a vaccine.
After the nurse gave me the Tetanus shot, I felt a strange tingling going
up the side of my neck, the same side as the injection. While making my
payment, I mentioned the tingling to the receptionist. She did not answer
me; she just took my money. No one told me anything about vaccine
reactions or what to do if they happened. I don't remember getting any
information or signing a release form. If I did, it was a perfunctory task
without any discussion about what to do if a reaction occurred. No blood
tests were taken or ordered. Twenty minutes later, I was in my car heading
home.
Over the weekend, I felt exhausted and ached all over. I stayed in bed,
assuming that the pain would go away. On Monday, even though still
hurting, I managed to go to work. My muscles became very stiff with deep
burning and stinging sensations, especially when I moved. The pain felt as
if I were being stung by wasps or set on fire. Even though the pain was
severe, I did everything possible to keep going. I just moved very slowly.
I took a lot of aspirin and very hot showers for relief. The onset of my
symptoms was slow and sporadic, which made it very difficult for me to
understand what was happening. I thought I was having a temporary reaction
to the vaccine or fighting a bug of some sort. I am the type of person who
rarely misses work and will show up even when I feel sick, so I kept going
in spite of how I felt.
During my morning break, I would take a 15-minute power walk around the
industrial complex. I stood up and noticed the burning sensation in my
thigh muscles had increased. My breathing became labored and I could
barely move. It was very difficult to walk a few steps and I couldn't even
make it to the end of the building.
I called the clinic and scheduled an appointment. During the appointment,
I asked the PA if the Tetanus shot could be the cause of so much intense
pain. He said that he had never heard of this happening to anyone, as if
it were impossible. He ordered some blood tests and then I was sent home
to wait for an answer. By this time, turning over in bed or standing up
was extremely agonizing. My body was limp and I was absolutely exhausted.
I knew that something was terribly wrong.
I called the Centers for Disease Control (CDC) and asked them for
information about vaccine reactions and if they could recommend any
treatment protocol. They referred me back to my physician and offered no
assistance. They said that they did not have any information or data on
vaccine reactions because they do not occur. This was not what I wanted to
hear! I wanted to be able to take something to my doctor so that we could
handle the problem together. I seemed to be bothering them by asking for
help.
After a few days, I called the clinic back and asked for the results of my
blood tests. I asked if someone could please call me back because it was
very important. The office staff said that the PA or a nurse would get
back to me right away and that my chart would be put at the top of the
call-back file. After seven polite phone calls, I realized that no one was
ever going to return my calls. The fact that I even suggested the Tetanus
shot may have caused my symptoms probably made they flag my file. I called
my HMO to let them know what had happened and asked for a new doctor.
Here's a news flash-company policy states that a patient cannot see a new
doctor until the beginning of the next month. I had to wait three more
weeks to see a new physician.
A few days later, the pain began to increase. I called the HMO again to
see if I could go to the Emergency Room near my job. Yes, I was still
trying to work. It sounds crazy, but I am very determined when it comes to
keeping my commitments. Actually, my employer was very understanding and
let me sit at my desk all day and do very little. The HMO told me to call
the administrative offices of the old clinic and ask them where the nearest
Emergency Room was located. Technically, I was still under their care
until the end of the month. A clerk said that since my condition was not
life threatening (how she knew that, I will never know), I could not go to
the Emergency Room and I should go to Urgent Care instead. That was a
drive of over an hour to a different county. Even though I felt as if I
was going to pass out, I got in my car and drove the 80 miles and somehow
found the facility. My legs would seize up and become very stiff. I would
have to lift them with my hand in order to use the brakes or change gears.
It is a miracle that I didn't have a traffic accident.
In hindsight, I realize that I wasn't thinking very clearly, which was a
large part of my illness. Mentally, I was very confused and being
assertive took too much energy. The fatigue and exhaustion diminished my
ability to make logical decisions. All I knew was that I hurt, but I
didn't know what to do about it. I felt as if I was wandering through a
foggy maze of rules and regulations while totally disoriented.
Foolish me-I thought the Urgent Care physician would see my pain. After
telling him how much I hurt, he said it was only stress and that I should
relax and maximize my food intake. Stress does not cause excruciating,
burning pain! He said that once I relaxed, the soreness would go away.
Since I still had not heard from the original clinic about my blood tests,
the Urgent Care physician called them for my results. They were normal.
He could not understand why the clinic would not let me know the results
without making another appointment-and he did not understand why I was
given a Tetanus shot. There was absolutely no medical reason to give me
one. His diagnosis was "general malaise" - a catch-all phrase for
tiredness and stress. He prescribed a sleep aid and sent me home. I felt
very discouraged because this physician could not see how much I hurt. He
seemed oblivious to how I felt.
Several days later, I talked to a nurse from the original clinic about my
blood work. Her reply was, "Hon, if you were sick, the doctor would have
called you." I tried to explain to her that normal test results and my
symptoms could be two separate issues, but she was not interested in my
opinion. The following week, the doctor called me because I had complained
to the HMO about the seven unanswered phone calls. She said that since I
did not say I was in pain, no one returned my calls-even though I was told
that someone would. Not once during this conversation did she ask my how I
felt. I reminded her that I was still in pain, but she never answered me.
Each one of these negative encounters was stressful and frustrating.
The slow-onset reaction to the vaccine was even more confusing. My
symptoms were sporadic, migrating throughout my body, primarily upward.
After a shower and aspirin, I could function. Once I had some lipstick on,
I only looked tired to most people. Bizarre sensations began to show up
all over my body. My jaw felt as if someone were pushing it from
underneath and applying pressure. Besides the deep burning and stinging,
it felt as if I was being stabbed by an ice pick in different parts of my
body. These stabbing sensations were rapid and very severe. Noises would
cause me to jump in alarm and I would gasp for breath. My hands and wrists
became limp and it was very difficult to hold any type of object; my
coordination diminished rapidly.
When the pain subsided, I could move around and accomplish basic tasks.
Then, my muscles would seize up and I had to stop and rest. I would
improve slightly and then regress into a very weak, fatigued state. The
aches and pains evolved slowly throughout my body and it was very difficult
to explain these odd sensations. My clinic had no experience with vaccine
reactions, therefore, I was not diagnosed correctly-in fact, I wasn't
diagnosed at all.
By the end of December, my symptoms increased and they migrated upward into
my arms and shoulders. My hands would contract and they curled toward my
forearms. I would have to sleep on them to flatten them out. I had a lot
of difficulty doing anything that required coordination. I could barely
cut my food; my hands would flail, and I would drop everything. Dishes and
glasses seemed to fly out of my hands. I was absolutely exhausted and I
walked like a drunk-staggering, wobbling, and falling down. Standing was
very strenuous and my legs felt as if they were made of cement and stairs
became impossible to climb. Sometimes, I would have to stop and try to
catch my breath because I felt winded.
At the beginning of 2001, I started to keep a journal of my physical
symptoms. Something told me that I had better write everything down for
future reference. I worked at a hospital for seven years and understood
the importance of documentation. The only pens I could use had to have ink
that flowed easily because I dropped them if I applied too much pressure.
It was hard to find the right words and I would transpose them, much like
dyslexia. My daily journal became a repetitious log of agonizing symptoms,
challenges, confusion, and child-like writing.
Desperate for help, I looked on-line for information about vaccine
reactions. I found a web site that explained the Vaccine Adverse Event
Reporting System (VAERS). When I called my medical clinic and asked them
to report my reaction, they said they did not have a "protocol" in place
for filing the form. I had to get the form myself, fill out the sections
describing my symptoms and personal information, and then I had to take it
to the clinic so that they could compete their portion. It is ridiculous
when a patient has to initiate and carry out a medical office function,
especially when extremely ill.
In January 2001, I finally saw a new physician. He was a family
practitioner associated with a large clinic in Los Angeles County. He did
not have any vaccine-reaction experience, but at least he listened,
researched the web, and tried to find some answers. He really was not sure
what to do and tried his best to understand and observe my progress. I had
so many strange symptoms that it was difficult for him to document all of
them.
My on-line search put me in touch with a woman from Germany who had a
Tetanus reaction seven years earlier. We found a woman in Arizona who had
her vaccine in April (7 to 8 months before my shot), and then we found
others who had reactions either from a Tetanus shot or from other vaccines.
Many of our symptoms were the same, but with slight variations.
The woman in Arizona suggested that I get a Tetanus Toxoid IgG test, so I
requested one from my doctor. Her results were elevated at over 7.0; mine
showed a level at 6.26. My physician, however, was unable to explain to me
what the results actually meant other than I had a reaction to the shot.
It is my understanding that after two weeks our levels should have been
closer to 1.0 rather than at these high levels after a month or two. Our
test results showed that we had high levels of Tetanus Toxoid in our
systems, much higher than normal.
What seemed clear to us was that physicians have a lot of difficulty
diagnosing these rare and complex disorders. I kept looking on-line for
more clues about Tetanus vaccine reactions so that I could get some help.
There were several cases that listed some of my symptoms, but no one case
had all of them. This one was the closest:
Reference is made to an article in the Journal of Neurology, 1977, entitled
"Unusual Neurological Complications following Tetanus Toxoid
Administration." The author reports a 36-year-old female who received
tetanus toxoid in her left upper arm following a wound to her finger. Five
days later, she noticed a weakness first of the right and then of the left
and later of both legs. She complained of dizziness, instability,
lethargy, chest discomfort, difficulty in swallowing, and inarticulate
speech. She staggered when she walked, and she could take only a few
steps. Her EEG showed some abnormalities. After a month, she was discharged
without neurological disturbance, but she continued to feel weak and
anxious. Examinations during the next 11 months showed continued emotional
instability and some paresthesias (numbness and tingling) in the
extremities. The medical diagnosis was "a rapidly progressing neuropathy
with involvement of cranial nerves, myelopathy, and encephalopathy.
I showed this summary to my physician and asked for a consultation with a
neurologist.
In late January, I experienced a very frightening episode. My head felt as
if a brick were pressing on it and I became very disoriented. The pressure
was very strange and it threw me into a state of confusion. That was my
last day at work-I just couldn't continue to struggle anymore and I was so
dazed I barely knew where I was. My attendance was getting worse; I was
absent more than I was present. I remember going to my doctor's office to
get the disability forms, but I do not remember much more than that.
Months later, I realized that I picked the wrong day to have this happen.
It was my physician's day off and it was the lunch hour. I told the clerk
that I didn't know where I was and that I was having trouble filling out
the forms. She helped me by correcting my mistakes. If I had known that
Urgent Care was only two doors away, I would have gone there and been
evaluated. I do not remember talking to my employer or the 45-minute drive
home. This was very dangerous. Truly, the "lights were on and no one was
home."
In February, I finally saw a neurologist. Was that upsetting! To say that
we did not communicate is an understatement. He ordered an MRI to rule out
Multiple Sclerosis and some of the other common neurological disorders,
which I did not have. When I asked if he had a prognosis or diagnosis, or
what he thought about vaccine reactions, he snapped at me and said that I
probably had some virus. Then, he stomped out of the room. He prescribed
a muscle relaxant and took some notes, but that was all he did.
His disapproving attitude increased my stress level and eroded much of my
confidence. I could not understand why anyone would treat me this way? I
felt devastated. He was the "expert," but he talked down to me as if I
were stupid. I asked him if I needed additional tests for my nerves
because I felt as if they were "shot." He said that I did not need any
other medical assessments and I did not need to see anyone else. I began
to understand that he did not know how to manage my case.
He prescribed Neurontin, an anti-seizure medication that is one of the
standard treatments for multi-symptom nerve pain. It seemed to reduce the
flailing and jerky motions, and some of the body aches. At that time, I
really did not like taking it. Adding medication on top of my confusion
made it difficult for me to know if the prescription was working or not.
It did not help with the staggering and wobbling. It did not reduce the
numbness or tingling in my limbs or the humming and vibrating sensations
that I experienced when I would lie down.
By this time, I could no longer lift my arms over my head. It seemed as if
my muscles stopped working and there was a lot of resistance along with the
pain. Washing my long hair was very taxing and I was left with a tangled
mess (dreadlocks, but not by choice). I had to cut it very short in order
to keep it clean. I felt alone and depressed. Some nights were terribly
frightening, especially in the beginning. The one time I thought about
calling 911, the snow was too deep for anyone to get to me. I just stayed
in my bed, coping the best I could. I called my family for reassurance,
but they really couldn't help very much. Basically, I was on my own-I
realized that being ill is very lonely.
The other Tetanus victims were my biggest support-talking with someone who
understood how I felt was incredible. We all had a lot of difficulty
communicating with our physicians. It did not seem to matter how often we
said that the Tetanus shot caused our symptoms. If the doctor or nurse did
not agree, it would not be written in the medical records. If these
complaints were not documented, they did not exist. This was a huge
lesson. We had the vaccine-we got sick. Were we missing something?
Using the Freedom of Information Act, I sent a request to the FDA to get a
list of the adverse reactions reported for my vaccine lot number. The
Center for Biologics Evaluation and Research sent me the results. This
information is available on-line as well, but only after two years have
passed. Anyone can request the results for their vaccine after filing a
VAERS form and submitting a written request. I was curious to know if
anyone else had experience a reaction, which they had, and I knew that this
information might be important in the future.
The National Vaccine Information Center (NVIC) sent me a booklet that
describes the National Childhood Vaccine Injury Compensation Program
(Program) and a list of attorneys who specialize in vaccine cases. Since
vaccine cases are deliberated in the Federal Court system, the attorney can
be from any state. I wanted to find someone in California because that was
where I lived. If I had to meet with my legal representative, it would be
at least feasible.
The first attorney I called said that he would help me fill out the forms,
but he did not want to bother to submit the application or represent me
because these cases were too difficult to win. He said that doctors and
witnesses did not want to get involved in time-consuming legal cases that
were seldom won. Only a few law firms accept vaccine cases because they
are so complicated. From the start, I knew that my chances of being
compensated were very low. However, I have a stubborn streak and was
determined to prove that I had experienced a vaccine reaction.
I persisted until I finally found an attorney who seemed to understand what
I was saying. He had years of vaccine litigation experience and questioned
me thoroughly before taking my case.
He was very compassionate and gave me a lot of personal attention
throughout the litigation process. This was a very emotional experience
and I felt fortunate to have someone who explained the process to me. The
government compensates the attorney once the case has been decided, whether
it is won or lost, as long as it was filed in good faith. Therefore, I did
not have to put up a large sum of money to undertake this process. My
first job was to prove to my attorney that I really did have a reaction and
that it lasted longer than six months. This is where my journal was useful
because it helped me remember the timeline of my symptoms.
My primary-care physician agreed that I should get another neurologist,
especially since I fired the first one. Seven months after receiving the
Tetanus shot, in June 2001, I was finally able to see a qualified
neurologist. He was very kind and did his research regarding vaccine
reactions. My attorney advised me to take a summary of my symptoms with me
to the appointment. It described all of the symptoms that I experienced
within the first 72 hours after receiving the vaccine and how I felt
currently. I found this list of symptoms helped my physician understand
what I was trying to say. It was also very important to have all of my
symptoms documented in my medical chart.
After a thorough neurological examination, the doctor agreed that I had
experienced a vaccine reaction. He made the diagnosis of "autoimmune
peripheral neuropathy" due to the Tetanus shot. He described it as a
variant of Guillain-Barré Syndrome, a documented vaccine reaction that is
often misdiagnosed. He said that I had an "ataxic gait" and axonal nerve
damage. He explained that my nerves were damaged and that they might
regenerate in a few years. I just had to wait until my body healed.
Finally, I had a diagnosis! My attorney then had the confidence to go
forward and create the Affidavit needed to file for the Program. He was
very familiar with my symptoms, too, since he had heard them from some of
his other clients.
In 1986, the Program was set up by the Federal government to help children
who had vaccine reactions. Though Tetanus shots are listed as a childhood
vaccine, I could still file for the Program even though I am an adult.
Applying is not as simple as it sounds. It was a shock to learn that it is
such a difficult process with an enormous number of requirements.
Remember, I was not suing anyone-I was only applying for a government
program. This is total litigation-to the fullest extent. Taking on the
government is similar to playing in the major leagues. That is why it is
very important to have an attorney with vaccine litigation experience.
The Department of Health and Human Services (DHHS) oversees the Program and
they are the "respondent" in the case. They have an arsenal of attorneys
who are hired specifically to prove a "petitioner" (the sick person) wrong.
A "Special Master" (judge), who is employed by the federal government, is
assigned to each case. The burden of proof is on the petitioner-the person
who is ill, or the parents of sick children. I had to submit 10 years of
medical records and countless documents that described everything about me.
Most cases are automatically denied, no matter how severe the reaction.
After my initial denial, I had to gather more evidence. It was very
difficult for me to duplicate all the paperwork that was needed and then go
to the post office and mail it. Keep in mind I hardly knew what planet I
was on, and physical activity was very exhausting. Most days, it was a
challenge to get up and dressed. Some days folding a blanket makes no
sense to me, let alone assembling documents in any logical order. It was a
process intended to prove that I was wrong or that I was lying. Believe
me-the experience was very painful, emotionally and physically.
The petitioner must be able to provide enough supporting documents so that
the attorney has sufficient evidence to prove the case. No attorney can be
expected to do all of the work necessary to win. Litigation requires an
incredible amount of work by both parties. The petitioner must be prepared
to expose his entire life to the courts. All of the documents are read by
a countless number of people-attorneys, clerks, physicians, and judges.
They knew everything about me. I felt more like a criminal than someone
who needed help. It was not as if I were trying to steal their money. I
have worked all my life, paid my taxes, and sworn my allegiance to this
country.
By August, my finances were getting desperately low. I was collecting
Unemployment Insurance, but no one would hire a cripple. I did what I had
to do to survive. It became necessary for me to sell my house, which by
some miracle I was able to accomplish. This was a terrible loss to me. I
had already lost my health, my job, my insurance, and now my home. A few
more months and I would have gone into foreclosure. Thankfully, my
mortgage broker and escrow officer did most of the work. I left all my
furniture and appliances behind and moved in with relatives until my
"trial" in October. Without the money from the house or my family's help,
I would have ended up in a homeless shelter.
The government has hired expert witnesses to help deny vaccine-injury
claims. These witnesses receive large medical grants from the government
to undertake their research, so I doubt that they want to "bite the hand
that feeds them." My neurologist decided to administer a nerve conduction
study, the results of which demonstrated abnormalities due to nerve damage.
In an attempt to discredit my doctor, the expert witness for the DHHS said
that the test should have been performed in an academic setting rather than
in a private office. He denounced the test results, as if they were
frivolous. Therefore, the government's attorneys stated that they were
unacceptable.
My attorney requested that the same test be performed at the University of
California at Los Angeles (UCLA). A world-renowned neurologist, recognized
for his expertise in nerve conduction studies, was asked to administer the
test. The government said that the ULCA physician could not write a
medical opinion about the results. Doesn't this sound a little strange?
One of the top experts in the field and his opinion was not important. My
attorney and I objected, of course. During the examination, I was not
allowed to volunteer any information about my case; I could only answer
questions if asked. I was so afraid that I would say or do something
wrong. The results of this test were abnormal and confirmed my
neurologist's conclusion. This was the additional proof that we needed.
It seems very logical to have a second opinion or additional medical tests
so that a patient will receive appropriate medical care. However, this
test had nothing to do with medical care. This was legal strategy. The
government was determined to prove me wrong and it has the money to do so.
My attorney considered the UCLA test a very high-risk tactic because he
could not be sure what it might prove. I was not going to UCLA get any
medical care-I was going there as part of a legal objective.
The trial was scheduled for October of 2002. The government made me a
pre-trial settlement offer of $5,000. I was stunned that they could put
such a low value on someone's life, so I turned it down. The trial was
conducted by means of a telephone conference call. The Special Master
assigned to my case flew from Washington, DC, to Los Angeles and directed
the proceedings from a conference room near the airport. My attorney and
neurologist were in attendance. We chose my neurologist for our expert
witness because he was familiar with my case and I knew that he cared about
me.
The other telephone-conference participants were the DHHS attorney and the
government's expert witness, a neurologist associated with a well-known
university. In reality, it was my doctor who was on trial because he had
to prove he knew what he was doing. Keep in mind that he is a licensed
physician with admitting privileges at an accredited hospital. In order to
have hospital admitting privileges, his credentials were examined
thoroughly. Under California State law, he is required to participate in
continuing-education programs so that he knows the current medical treatments.
The trial took about four hours, during which time I was not allowed to say
anything. The judge asked me a couple of "off the record" questions prior
to the trial, specifically if I was the one who filled out the top part of
the VAERS form. He said that he knew the clinic had not filled out that
portion of the form because he could read it. He laughed about it and I
believe that he was concerned that the information was correct. After
that, I had to remain silent while these people argued about the case. The
PA at the original clinic had written in my chart that I was neurologically
intact. The government used that statement as compelling evidence that I
had not experienced a vaccine reaction-a neurological assessment made by
someone who admitted he had never even heard of a vaccine reaction.
The trial was an expensive endeavor; in fact, I am sure the entire process
was expensive. I believe that it was very important for the Special Master
to see my witness and attorney face-to-face, but no one was interested in
seeing me. It was my doctor and attorney who had to represent my physical
condition and mental character to the Special Master. No one else that was
involved with these proceedings, even my attorney, ever saw me.
Fortunately, he and I had many long conversations and I felt that he had
taken the time to get to know me. The other participants only reviewed my
medical records and discussed their impressions.
The Program was written so that specific vaccine reactions will be
compensated, which increases the difficulty to win these cases. The
narrower the definitions of possible reactions, the more cases will be
eliminated during the legal process. The Tetanus vaccine-related injuries
that may be compensated are:
"Anaphylaxis or anaphylactic shock, brachial neuritis, and any acute
complication or sequela (including death) of an illness, disability,
injury, or condition referred to above which illness, disability, injury or
condition arose within the time period described."
Since physicians may have different interpretations or diagnoses for the
same symptoms, or they may not even recognize vaccine reactions, the
government is able to eliminate many of these cases.
Axonal nerve damage happens when the myelin sheath is injured, however, I
did not have any physical proof of this because my first neurologist
refused to conduct the appropriate tests, even when I asked for them.
Adequate health coverage does not guarantee high-quality results. Two of
the other Tetanus victims were being treated by a university medical
facility and a major health clinic and they received only minimal care. By
the time of the trial, I could no longer afford medical insurance or
expensive medical tests, such as a nerve biopsy, which could have provided
more proof of my nerve damage.
After the trial, the Judge recommended that a settlement be considered.
The DHHS attorney requested more documents-I could not seem to satisfy them
with enough paperwork. They said that we had not proven our case, but they
needed more information. While we were waiting for the Judge's decision,
the government made another offer of $15,000. I felt that my life was
worth more than the price of the average car and I told my attorney that I
thought the amount was insulting. He was a little unsure about my
decision. If we lost the case, I would get absolutely nothing. If I
accepted their offer, at least I would get something.
My odds would have been better at a Las Vegas casino. This strategy puts a
petitioner at a very significant disadvantage. This is a very adversarial
relationship because the government does not work with a petitioner to
solve the problem. It tries very hard to prove them wrong. The choice is
to accept the pittance they offer or try for more money. For most people,
it takes years to get to this point, and it is easier to give up rather
than to continue to fight. Since we did not agree on a settlement amount,
the Special Master chose to resolve the case and write a Decision.
The whole process is lengthy and intimidating, and when someone is ill, it
is even more difficult. The Vaccine Courts require very detailed
information about a petitioner and scrutinize all documents thoroughly. I
applied for Social Security Disability (SSD) because I was disabled and
entitled to assistance. I needed a back-up plan to survive financially
since there was no guarantee that I would win my vaccine case. Money
wasn't exactly falling from trees and there is something about eating that
I seem to enjoy. All my SSD documents had to be submitted to the Vaccine
Courts. My attorney suggested that I retain a law firm that specialized in
SSD applications because he was not familiar with the process. This is
another reason why so many physicians and attorneys do not want to get
involved in these drawn out cases. Now, I had to duplicate everything so
that both law firms and DHHS were fully informed. SSD requires specific
medical appointments and psychological evaluations, the results of which
had to be forwarded to the DHHS attorney.
Under the Program, a claim must be filed within three years after receiving
a vaccine. The process can take years, but it must be completed before
suing a physician or the manufacturer. Then, it could take another five
years to finish those cases. Who has the time, money, or energy for years
of legal proceedings? How is someone supposed to do this when their only
goal should be to get healthy? To me, this is an absolute crime. The
government and pharmaceutical companies have the time, resources, and
attorneys to litigate these cases. What does the patient have?
After the trial, I found a place to live and waited for the results. I
lived on the money from the sale of my home, but I still had not been
approved by SSD. The stress and tension was really starting to get to me.
In November, while walking in my apartment, my legs gave out and I
collapsed. I called a community medical clinic and managed to get an
appointment. They helped me get a grant for Neurontin, which I had stopped
using. It is an expensive drug that I could no longer afford. They also
recommended large doses of Motrin and Tylenol for the pain. By now, I was
taking too much aspirin, so it was time to stop before I developed other
complications. I was scared that I was getting weaker and weaker. If I
stayed calm and quiet, my pain and symptoms were less intense, but when
stressful situations arose, such as moving and legal proceedings, my
symptoms increased. My legs were very weak and it was absolutely
impossible for me to walk without a cane-I couldn't even walk around one
block.
My SSD was finally approved, but I still had to wait for the vaccine case
to be resolved. My attorney was starting to wean me in the event we lost
the case, which was highly probable. He kept reminding me that very few
people actually win. I was beginning to feel that it was time for me to
move on with my life and accept the consequences.
In May of 2003, my attorney called and let me know that I won my case. He
was practically doing cartwheels, but I had no idea what it meant.
Besides, by that time I was pretty numb emotionally. My feelings had
flat-lined after months of being in a constant state of disappointment. He
sent me a copy of the Special Master's Decision, which stated:
"The issue in this case is whether the injuries alleged by Petitioner, Miss
Jan DeGrandchamp, occurred as a result of her tetanus-diphtheria (Td)
vaccination administered on 24 November 2000. Specifically, Petitioner
alleged brachial neuritis, anaphylaxis and peripheral neuropathy as sequlae
to the Td vaccine. The Court finds that Petitioner did not meet her burden
by a preponderance of the evidence concerning her claims of brachial
neuritis and anaphylaxis. However, the Court finds that it is more likely
than not that Miss DeGrandchamp did suffer peripheral neuropathy as a
result of the Td vaccine.
Petitioner provides medically plausible mechanism, an autoimmune response,
for Miss DeGrandchamp's injuries. The onset of her maladies was temporal
to the administration of the Td vaccine. The medical records indicate that
doctors searched for other causes for Petitioner's symptoms but found none.
Although both medical experts are eminently qualified, only Dr. H,
Petitioner's expert, performed a face-to-face evaluation of Miss
DeGrandchamp. Finally, Dr. H's concern that the medical records indicated
only subjective findings was allayed by the objecting findings of the two
nerve conduction studies. Thus, the Court finds that Petitioner has proved
by a preponderance of the evidence that the Td vaccine that she received on
24 November 2000 was more likely than not the cause of the peripheral
neuropathy she suffers until this day."
This decision entitled me to an award under the Vaccine Act.
Then another roller-coaster ride started. There were more status
conferences with my attorney and the DHHS attorney. After the Judge issued
the Decision, DHHS said that we had not proven that I was permanently
disabled. According to Social Security, another division of the federal
government, I was permanently disabled and they were sending me a monthly
check for that disability. According to DHHS, that was not adequate proof.
It was a constant battle to stand up for my rights and fight for my
beliefs.
At first, my attorney thought that the judgment would make me whole, as in
most lawsuits. Therefore, he asked for a generous settlement. Then, DHHS
asked me to provide more documents about earnings and expenses-ten years of
taxes and medical expenses. These demands were exasperating and
frustrating. Jump-how high? They have the power to ask for anything they
want, and they always want it right now. They asked for estimates of my
current and future insurance expenses. Since I am considered "disabled," I
cannot be insured. My Medicare coverage would not start until another
year, so I had to be careful not to get sick. SSD is considered taxable
income, so the prorated amount was deducted from my settlement.
In late September of 2003, I finally agreed to a figure that was much less
than the original amount my attorney requested. I was up against another
wall. My options were that I could continue to fight for more money, which
could take another year or two, or take the settlement. If we continued,
the Special Master could reduce the amount I was offered if he felt like
it. What choice did I have? I was too tired to fight anymore-and that is
exactly what they wanted. I did not have the energy or finances to
continue.
Even after agreeing to an amount, there was still more waiting. It would
take months for approval by a DHHS supervisor, followed by Court approval.
In January of 2004, I signed a "Stipulation" that re-stated the agreed
amount. I started to believe that I may finally get some money, but I also
knew that it would still take a long time. If anything happened to me
while waiting to be compensated, no one in my family would have any claim
to it. The government would just keep it. I just had to be very patient.
Finally, in April of 2004, I received a check from the US. Treasury
Department. By this time, my enthusiasm was pretty low and I found it very
difficult to understand and accept the whole process.
After all of this, the only conclusion that I can make is that there really
isn't anything special about my case. It is a documented fact that a
certain number of people react to vaccines-and I was one of them. My
reaction is considered a statistical probability-the "one in a million"
that just happens. Of the small percentage of people who experience
vaccine reactions, an even smaller percentage will be able to apply for the
Program. They lack the appropriate medical assistance and documentation.
In my group, only one other woman filed. We both gathered as much evidence
as we could, however, I won and she lost. Her case was denied because her
medical records did not provide enough evidence that the vaccine caused her
injuries.
I won my case was because I refused to allow the federal government to
treat me as if I were worthless. I know that I have rights-the right to
choose, the right to be informed, and the right to be treated with respect.
After more than three years, I was compensated for my reaction to a common
inoculation. Many cases take much longer than this, often without success.
I learned some valuable lessons, but they were lessons of pain and
struggle. I will never be the same. My muscles are still stiff and always
ache. I cannot raise my arms over my head without feeling pain, and I
wobble and lose my balance when I walk. I wear a medical alert tag that
says "no vaccines" so that I will not be given a Tetanus shot if I am in an
accident. I am getting stronger every day and I know that I will
eventually get better. Someday, I will dance again.
-------
Jan DeGrandchamp was born in Santa Barbara, California. After attending
local schools, she obtained an A.S. degree in Business and Management. She
was employed as an Administrative Assistant for various businesses in
California and Oregon, including a community hospital and a major film
studio.
Music has always been one of her favorite pastimes, especially gospel
music. She sang and danced with Della Reese's church choir in Los Angeles,
California, for over two years. Her other hobbies included camping and
hiking, all of which she has stopped.
Currently, she lives near Portland, Oregon, to be close to her son. Her
illness has forced her to move several times. Next year, she hopes to find
a more permanent residence. She spends most of my time trying to improve
her health and singing in a small, sit-down band.
http://www.redflagsweekly.com/conferences/vaccines/2004_sept01.php
[Tetanus]