Adhesion Related Disorder, ARD, Capps, Abdominal Pain, Adhesions, adhesion-related disorders, complex abdominopelvic and pain syndrome, chronic pelvic pain, hysterectomy. Patient oriented database of information regarding all aspects of internal scar tissue, adhesions.
Wednesday, April 05, 2006
The case for ARD as an "end means diagnosis"
ICD 10 Index to Diseases... September 11, 2003
http://www.cdc.gov/nchs/data/icd9/draft_icd10idx.pdfDraft ICD-10-CM Index
Page 55- 58 of 1560
Adherent
Adherent - Adhesions, adhesive
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Back to my original point here:
Many times I hear far to many persons within the medical arena state that "post surgical adhesions, abdominal/pelvic" are NOT "diagnosable" thus we cannot really treat you for them, or state that adhesions are the cause of your presenting symptoms!
Well, I 100% disagree with that "bologna!"
Why do I believe that:
"Peritoneal Adhesions"
CAN
Be shown to be a "diagnosable disease" in and of it-self and is the "end means" of a variety of chronic, disabling and debilitating symptoms that can cause death?
I can prove to you why "Peritoneal Adhesions" is deserving of being recognized by the United States Government "FDA" as an "End Means" physical disease known as
"Adhesion Related Disorder!"And I believe I will leave little doubt in your minds that there IS no valid reason why there is not "ICD-9-CM" for it, and I believe that I KNOW WHY there isn’t!
You can hear my opinion, my "charges" against the
"US Government and the "FDA"
As to why they are not assigning this
Diagnostic code to OUR disease!
Lets take a look at a "disorder/disease" that compares in many ways to ARD. Though not in etiology (cause) or in symptoms, it manifests itself in ways that are "not immediately diagnosable via any medical testing." Doctors are not quick to respond to making a medical determination until more and more symptoms develop thus increasing the awareness that indeed, something in the patient is not within the "normal" in how healthy human beings present. Over time and compared with other "normal" behaviors and development of person who are NOT afflicted with it and compared with the "symptoms" and medical history’s of other patients who ARE afflicted with the disorder of suspicion, an apparent recognizing factor exists that the patient very well falls within the "guide-lines" of the disorder in question!
A "medical term" for this disorder can be presented to the patient and/or family as the suspect cause of the symptoms, and from there specialized diagnostic tests
CAN BE ordered that will firm the Dr.’s suspicions so he can then make the "diagnosis."
Doesn’t mean the tests have to be ordered for a Dr. to make this diagnosis, as not all the results will indicate that it is in fact the disorder that is recognized by it’s symptoms! These test results are all over the spectrum and some may be "less or more" in degree then another patient who has already been "diagnosed" or "labeled" as having it this disorder, thus it is only a "test" to "add credence" to the diagnosis, or "general guidelines" as to the probability of the diagnosis.
It can take years to get to the "diagnostic test" stage when dealing with the many Dr.’s these patients see, yes, years…but in the mean time, this patient is already living with symptoms that disrupt their life and the lives of their family and friends, and though it is not "progressive" such as ARD, there is no resolution to it’s symptoms, however, there are certain "treatments" that offer the patients some relief in the presenting symptoms, some!
What is the disorder that parallels "ARD," as far as being a candidate for being diagnosed almost solely based on it’s symptoms, yet HAS an "ICD-9-CM Diagnosis Code" so that a medical Dr. can use it when referring to the disorder his patient is afflicted with? And I am sure that unless a person has had their head stuck in the sands of the dessert, they will have heard of this, time and again!
Cerebral Palsy DiagnosisHow is the Diagnosis of Cerebral Palsy Made? When an infant or child has brain damage, a variety of symptoms can lead doctors and parents to suspect that something is wrong. In the first few months of life, an infant with brain damage may demonstrate some or all of the following symptoms:
Lethargy, or lack of alertness
Irritability or fussiness
Abnormal, high-pitched cry
Trembling of the arms and legs
Poor feeding abilities secondary to problems sucking and swallowing
Low muscle tone
Abnormal posture, such as the child favoring one side of their body
Seizures, staring spells, eye fluttering, body twitching
Abnormal reflexes.During the first six months of life, other signs of brain injury may also appear in an infant’s muscle tone and posture. These signs include:
Muscle tone may change gradually from low tone to high tone; a baby may go from floppy to very stiff.
The child may hold his or her hand in tight fists.
There may be asymmetries of movement, that is, one side of the body may move more easily and freely than the other side.
The infant may feed poorly, with their tongue pushing food out of their mouth forcefully.
Once a baby with brain damage reaches six months of age, it usually becomes quite apparent that he or she is picking up movement skills slower than normal. Infants with cerebral palsy are more often slow to reach certain developmental milestones, such as rolling over, sitting up, crawling, walking and talking. Parents are more likely to notice these developmental delays and abnormal behaviors, especially if this is not their first child. Sometimes when they express their concerns to their physicians, their child is immediately diagnosed as having cerebral palsy. More often, however, medical professionals hesitate to use the term "cerebral palsy" at first. Instead, they may use broader terms such as:
Developmental delay, which means that a child is slower than normal to develop movement skills such as rolling over and sitting up Neuromotor dysfunction, or delay in the maturation of the nervous system Motor disability, indicating a long term movement problem Central nervous system dysfunction, which is a general term to indicate the brain's improper functioning Static encephalopathy, meaning abnormal brain function that is not getting worse.
So why do doctors frequently delay making a final diagnosis and prognosis when a child may have cerebral palsy? Part of the answer lies in the plasticity of a child's central nervous system, or it's ability to recover completely or partially after an injury occurs. The brains of very young children have a much greater capacity to repair themselves than do adult brains. If a brain injury occurs early, the undamaged areas of a child's brain can sometimes take over some of the functions of the damaged areas. Although the child may have some motor impairment, he or she can often make great progress in other motor skills. Another reason doctors may delay a diagnosis of cerebral palsy is that a child's nervous system organizes over time. Damage to the brain may affect your child's motor abilities differently. For example, tone can go from low to high or vise versa, or involuntary movements can become more obvious. Generally, however, a child's motor symptoms stabilize by two to three years of age. After this age, tone is probably not going to change dramatically. So what does all of this mean? It means that a cerebral palsy diagnosis is not made over night. Since the extent of your child's problems will probably not be clear for some time, his or her symptoms need to be monitored by an interdisciplinary team. This is a group of professionals with specialties in different areas. These health care professionals gather information on the child's accomplishments and make comparisons over the months and years of the child's life. They will keep you up to date on your child's current needs and problems, as well as the medical reasons for these problems, if known. When diagnosing cerebral palsy, the interdisciplinary team must first conduct an assessment, or evaluation of the child's strengths and needs in all areas. As your child grows older, additional assessments may be necessary. In Conclusion: Cerebral palsy is diagnosed by a complete examination of your child's current health status. Doctors will test your child's motor skills and look carefully at his or her medical history. They will also look for slow development, abnormal muscle tone, and unusual posture. When diagnosing cerebral palsy, doctors must rule out other disorders that can cause abnormal movements. Cerebral palsy does not get worse, in other words, it is not progressive. Based on this fact, doctors must make the determination that your child's condition is not progressively getting worse. ( Doctors will also use a number of different specialized tests in diagnosing cerebral palsy. For example, the doctor may order a CT (computed tomography). This is an imaging of the brain that can determine underdeveloped areas of brain tissue. The doctor may also order an MRI (magnetic resonance imaging). This test also generates a picture of the brain to determine areas that may be damaged. In addition to these imaging tests, intelligence testing is also used. This helps to determine if a child is behind from a mental standpoint. In addition to diagnosing cerebral palsy through a complete and thorough examination of the child's abnormalities and behaviors, a review of the mother's pregnancy, labor and delivery and care received is also conducted.
Courtesy of: Cerebral Palsy Help.com
Now, see if YOU, the victim of ARD, have any "symptoms" that might offer a Dr. "even a hint" that you might have "post surgical adhesions" based on your operative and medical history and compared with others who appear with similar medical profiles and symptoms, and differ from the "normal" healthy human being? Did you come up with anything here?? I suspect that you did and it didn’t take too much to figure them out did it?
Now, do YOU, the victim of ARD, have any "symptoms" that might offer someone at the "US Dept. of the FDA"(a division of the "United States Health and Human Services) "even a hint" that you might have "post surgical adhesions" based on your operative and medical history and compared with others who appear with similar medical profiles and symptoms, and differ then "normal" healthy human beings?
I think that the above presentation was adequate enough, in my opinion, to prove that
"Adhesion Related Disorder" very well fits the "profile" of a diagnosable disorder.
I also think that the above presentation was adequate enough, in my opinion, to prove that "Adhesion Related Disorder" does in fact deserve to be, at the very least, considered for an
ICD-9-CD Diagnostic code as an end means "disease!"
ARE YOU READY To ADD INSULT TO INJURY?
This will NOT be easy to read, as it hits on nerves that have already been impacted severely, and it will hit on nerves you never realized you even had! However, not knowing it doesn’t make it any less real, to know it allows one to deal with it, may not like it, but at least your aware!
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Based on the definition of a "Chronic Disease" as set forth by the
"United States Centers for Disease Control and Prevention"
National Center for Chronic Disease Prevention and Health PromotionChronic Disease Prevention
"About Chronic Disease"
http://www.cdc.gov/nccdphp/overview.htm
Definition
Broad definition of chronic disease:
Illnesses that are prolonged, do not resolve spontaneously, and are rarely cured completely.
Chronic diseases targeted by CDC's National Center for Chronic Disease Prevention and Health Promotion are those illnesses that fit the broad definition of chronic disease, "that are preventable, and that pose a significant burden in mortality, morbidity, and cost."
Overall Burden
Costs of Chronic Disease
The United States cannot effectively address escalating health care costs without addressing the problem of chronic diseases: More than 90 million Americans live with chronic illnesses. Chronic diseases account for 70% of all deaths in the United States.
The medical care costs of people with chronic diseases account for more than 60% of the nation’s medical care costs.
Chronic diseases account for one third of the years of potential life lost before age 65.
Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people.
Seven of every 10 Americans who die each year, or more than 1.7 million people,
die of a chronic disease.
The Robert Wood Johnson Foundation, Annual Report 1994; Health, United States, 1994
I would like to turn this over to Dawn Rose, of "ARDchat.com," and ask her to encapsulate this presentation on "ICD-9-CM Diagnostic Codes" and how she thinks those afflicted with ARD might best serve their needs as we wait upon a code to become reality.
God Bless ALL!
Beverly Doucette
Founder of the ARD "sister site:"
www.adhesionrelateddisorder.com
Why Do We Do What We Do For The Cause of ARD? Because We care, That’s Why!
I would just like to add that the recognition of Adhesion Related Disorder as an end means diagnosis starts slowly but surely with obtaining state resolutions recognizing ARD as a debilitating illness.
We must lay the ground work slowly but surely by having each state and the constituants therein protected by a resolution that recognizes ARD.
With this resolution in hand sufferers may take the resolution to their doctors to validate their illness, to help sufferers secure federal disability benefits, and to use as an educational tool for all.
ARD will not be officially recognized until this groundwork is secured.
Then we can move forward with governmental issues with credibility and dignity.
The case can be made for diagnostic codes with the security of our states behind us.
I have started the process to obtain a resolution in my state, based on the New York and Wisconsin resolution. It started with a simple call to my local state representative ( the fabulous Elizabeth Porier (R) ) She was most enthusiastic to help.
I pray you see your role in laying the groundwork in obtaining a resolution to help in your state, to help your friends and family.
Please see on this site and in www.adhesionreateddisorder.com a guideline for obtaining your state resolution, recognizing Adhesion Related Disorder.
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