Interesting Historical Facts about Peripheral Neuropathy and Agent Orange as was reported by the Neuropathy Support Network prior to the 2012 change in VA law:
The Environmental Protection Agency decades ago confirmed the connection between Agent Orange / dioxin with Peripheral Neuropathy numerous times and in their literature they do not limit the neuropathy to only the acute form as does the VA. The EPA years ago noted that Agent Orange and the components of dioxin were serious toxins and carcinogen, but this was ignored for decades. Other medical literature warned of the possible dangers of dioxin years before its use in Vietnam, finding connections to serious illnesses, including the neuropathies, warning of the dire consequences. These warnings were ignored.
When veterans in the 1990’s sued the VA because they were dying of cancers (cancer and related treatments are a known cause of neuropathy), the VA fought multiple law suits by veterans, appealed any favorable verdict repeatedly, avoiding helping these veterans and their families who were dying of cancers since the Vietnam War. The high probability was ignored by everyone.
Now in December 2007 (again many decades later) a research study was published from the University of Pennsylvania, School of Veterinarian Medicine which confirmed that components of Agent Orange caused a heretofore unknown destructive effect on the basic cellular structure of the human body and was a serious toxin and a carcinogen of the worse kind.
Beyond the failure to respect the warnings and findings decades ago, many doctors and Neurologists still do not fully understand the clinical skills needed to diagnose and treat patients with Peripheral Neuropathy. There is much neuropathy research demanding to be done.
Training of neurologists by 2012 has shown some improved with the release of the Textbook of Peripheral Neuropathy, Peter D Donofrio, MD, Editor, Professor of Neuropathy, Chief of Neuromuscular Section, Vanderbilt University Medical Center, Nashville, TN Published by DEMOS Medical, 2012
Medicine is slowly coming to terms with the fact that Peripheral Neuropathy is a potentially serious condition and a disease of the Peripheral Nervous system, often leading to serious disability and is not JUST the symptom of something else. Every disease is a symptom of something else yet they are still a disease when a major body system is affected. Knowing the TYPE of neuropathy is often the first step in understanding or pointing toward a CAUSE.
After four decades of failure to diagnose my own polyneuropathy, following exposure to Agent Orange in Vietnam in 1968, with symptoms recording in my medical record as far back as 1969, I am puzzled by statements that toxic neuropathies are rare.
Too many old assumptions and aged thinking prevented medicine from taking these neuropathies seriously and asking new questions about old assumptions or outdated findings about toxic neuropathies. Who ever thought before 2007 that dioxin caused a hereto unknown destructive effect on the very cellular structure of the human body decades after exposure. (From the proceedings of the Institute of Medicine from research at the University Of Pennsylvania School Of Veterinarian Medicine in December 2007).
The foundation principle for dismissing toxins as rarely causing Peripheral Neuropathy is the long standing principle that once a person is removed from a toxin, the symptoms of Peripheral Neuropathy will usually cease and if the toxin is retained in the human body, the levels are not high enough to cause a chronic neuropathy.
Now I must say that the mother of any child actually understands this principle well, for in their experience with first aid, if a child who runs into poison ivy in the woods and you remove the child from the toxin, wash off the area and apply some creams, the symptoms remit. But what many do not recognize is the qualifier in such statements of “usually remit when the patient is removed from the toxin.” There are times when assumptions about toxic neuropathies often prevent good thinking and medical doctors need to read the book out of Harvard University on, How Doctors Think by Dr. Groopman MD.
It is known that toxins are stored in the teeth, bones and fat of the human body for years and that is why the cancers and the growing list of disease now recognized by the VA, appeared decades following exposure and why the VA now recognizes birth defects in children fathered by veterans exposed to Agent Orange, such as spina bifida. Perhaps this is a start to recognize why thousands of veterans from Korea and Vietnam plus other places, after exposure to Agent Orange, suffered without help or support for decades as we turned our eyes sending them home.
This is why any argument by the experts about dosages retained in the human body not being high enough is not even relevant. Any dosage of dioxin is dangerous to the human body and it is retained in the human body for decades, proven by the growing list of presumed conditions recognized by the VA, but denied only a few years ago to so many veterans of Vietnam and Korea plus.
One of the well known causes of Peripheral Neuropathy is type two diabetes, which the VA notes is caused by exposure to Agent Orange and so chronic peripheral neuropathy secondary to diabetes would be approved by the VA. Thus the standards of the VA, with claims that Agent Orange involves only acute forms of neuropathy and not chronic forms fail again the test of time and fact.
I know, you say this neuropathy is caused by diabetes and that is why it is chronic. Yet many veterans have been recognized and approved by the VA having service connected chronic neuropathy outside of diabetes due to exposure to Agent Orange. Is it possible that it is diabetes plus another form of autoimmune neuropathy or maybe even exposure to Agent Orange itself? Of course, assumptions sometimes are the worst enemy of good thinking and when one assumes the cause is diabetes, medical science rests and looks no further.
I remember the patient diagnosed with diabetic neuropathy and the doctor stopped looking. When the patient came to me for guidance and help, after listening to the patient it sure looked to this layman like they had something going on with the vascular system. Not being a doctor, but armed with the patient knowledge on Peripheral Neuropathy in the book by Dr. Norman Latov, MD (Neurologist – Weill Medical of Columbia University), I referred the patient to another doctor who diagnosed vasculitic neuropathy, treated it and perhaps saved the patient’s life.
When Peripheral Neuropathy was first listed by the VA in reference to Agent Orange, the VA criteria was very broad and Vietnam and Korean veterans flocked to the VA for help. The VA responded to this large surge of veterans seeking help by reducing the time criteria from exposure to symptoms and from symptom on set to remitting of symptoms. The VA did this multiple times sharing the fact of their uncertainty of what was involved with Peripheral Neuropathy. Then the VA stated that the condition recognized is limited to acute and sub-acute peripheral neuropathy. This medical opinion was based on NO research or fact of note combined with old and unscientific data or opinion. With these changes any claim regarding Peripheral Neuropathy based on presumed exposure to Agent Orange became a useless waste of time. To this day the VA continues to claim that any chronic neuropathy or polyneuropathy was not supported by the data from the Ranch Hand Study or Air Force Data, but then this is not relevant either.
The Provost of Research, Dean of the Graduate School of Kansas State and President of Kansas State University Research Foundation, Dr. R.W. Trewyn, PhD (in cellular and molecular biology) testified on March 15, 2000 before a congressional committee, that the Operation Ranch Hand Study, Army Chemical Corp personnel study in Vietnam and the Air Force Study were so scientifically flawed on every count, that they are basically useless to science and had no validity or reliability to prove anything. He noted that the VA should give every benefit of doubt to the veteran exposed to Agent Orange. Of course this never happened and this testimony by this expert on research and biology is buried under piles of paper along with the veterans who died without help or promised support. These flawed studies have been the gold standard for the VA decisions for years until the research in 2007.
It is not surprising then that today a number of veterans of Vietnam have been approved by the VA for benefits related to exposure to Agent Orange and chronic Peripheral Neuropathy. This was done, not on the basis of presumption or the VA definition, but on solid proof of the connection between exposure to Agent Orange, their medical history and diagnosis of neuropathy with all other causes ruled out.
Having shown that all other causes of their neuropathy or polyneuropathy were ruled out by testing, showing that the veteran served in Vietnam or Korea during war, were exposed to Agent Orange via clothing, equipment, food, water, or by breathing the air or smoke from the old dioxin barrels used to burn waste, they proved their case. This occurred on the legally recognized basis of reasonable doubt, with the conclusion reached based on the highest probability that the veteran’s diagnosed condition and disabilities were due to his exposure to Agent Orange. Thus Agent Orange was shown to be the highest probable cause of their Peripheral Neuropathy.
Veterans should consider using notarized affidavits from the treating Neuromuscular Neurologist, when the VA refuses to recognize facts in the veteran’s medical record. Affidavits from your qualified doctor can be used to counter opinions from unqualified VA doctors. Did you know that by VA law any doctor with an MD qualifies to render an opinion in your case and they may be from any field of medicine? Many of them are often retired, non-practicing and are not Board Certified or have current training. Affidavits from your qualified doctor can be effective when misstatements of fact are repeated in VA documents until the VA even believes them! The use of affidavits places the expertise of your treating Board Certified Neuromuscular Neurologists in the court with you.
In the real world, few Neuromuscular Neurologists will have the time to write these documents and it is doubtful you would be able to afford the time it takes to pay such a professional. Few Neuromuscular Neurologists will have the time to appear in court with you and it is doubtful you will have the funds to pay for such an appearance. So what do you do?