Protecting our veterans' children
Legacy of Our Veterans' Military Exposures L3C
Justice - social, environmental, human
Protecting our veterans' children™

Agent Orange Legacy – Chiari

February 13, 2017
Legacy of Our Veterans Military Exposures (lovme) mini logo

Legacy of Our Veterans’ Military Exposure

 

 

My daughter and I have been advocating for the families of veterans exposed to Agent Orange and the veteran since 2007.   We have connected with numerous children of veterans exposed to Agent Orange and their families.  We also gathered some health information along the way.  As a result, we found that there is a high incidence of Chiari among this population, as well as autoimmune and rare disease, cancers, mental health illness, and learning disabilities such as autism and ADHD.

We have created a group on facebook to gather information from the adult children of veterans exposed to Agent Orange.  We will  work with the VA, our elected officials and Institutes of Medicine in hopes of adding Chiari as a qualifying birth defect associated with Veterans’ qualifying service in Vietnam or Korea.  Join us at Agent Orange Legacy – Chiari

As many of you know, spina bifida is the only birth defect or illness recognized by the VA in the children of male veterans exposed to Agent Orange. Recently, we learned that at least two (2) biological children of veterans exposed to Agent Orange who have been approved for Entitlement to a monetary allowance under 38 U.S.C.A. § 1805 for a Vietnam Veteran’s child because Chiari is a form and manifestation of Spina Bifida. 

We have found that both claims were approved but only after the claim(s) were appealed.  To apply use: Application for Benefits for Certain Children with Disabilities Born of Vietnam and Certain Korea Service Veterans VA Form 21-0304.

 

What We Learned…

A.  First Case:  DOCKET NO. 02-00 680, Veterans’ Appeal;  Chiari as a form and manifestation of Spina Bifida in biological child of a male veteran exposed to Agent Orange

(1)  Spina bifida can occur at other levels of the spine.  

(2)  Spina bifida is not limited to spina bifida per se, but potentially includes other forms and manifestations of spina bifida except spina bifida occulta. Jones, 16 Vet.App.at 225-26.   

(3)  Chiari I Malformation and syringomyelia are neurologic abnormalities and both manifestations of a neural tube defects which are associated with spina    bifida (from a pathophysiologic and etiologic point of view)

(4)  The doctrine of reasonable doubt; A veteran is entitled to the “benefit of the doubt” when there is an approximate balance of positive and negative evidence.

 

B.  Second Case:  DOCKET NO. 06-22 849,  Chiari as a congential birth defect, Chiari II malformation, a form of Spina Bifida in biological child of male veteran exposed to Agent Orange

(1)  Chiari II malformation is a form of spina bifida and is a congential birth defect.

(2)  Encephalocele and Anencephaly are not covered although they are neural tube defects.

(3)  The term “spina bifida” is all forms and manifestations of spina bifida, except spina bifida occulta (for the purpose of VA disability benefits).

(4)  Congenital hydrocephalus with Chiari II malformation is a form of spina bifida which was determined by neurosurgeon who was obtained to provide an    independent opinion.

(5)  Exposure to Agent Orange is a known risk factor for spinal dysraphism in an off-spring, which may include a congenital defect in the vertebrae with distention of the meninges with or without spinal cord involvement and that it was not uncommon for the diagnosis to include a Chiari II malformation as well as hydrocephalus, according to an independent medical expert.

(6)  The independent medical expert further stated that Chiari II malformation is a brain stem malformation found only in patients with spinal dysraphism.

(7)  A Chiari II malformation is found only in the setting of spina bifida and therefore is a congenital birth defect, even though there was no mention of skin findings or closure of spinal dysraphism according to the independent medical expert.

(8)  A Chiari II malformation is a form of spina bifida, which is uncontroverted, and not spina bifida occulta or other neural tube defects such as encephalocele and anencephaly according to the independent medical expert.

 

 Do be sure to download each pdf and read them for yourself.  The above is a summary of the most important information which I extracted from the appeals.  You should keep in mind that each case is different so results of the extracted info might not apply to all diagnosed with Chairi Malformation.

 

 

 

 

 

 

 

 

Legacy of Our Veterans' Military Exposures
Widow of a Vietnam veteran exposed to Agent Orange and founder of Agent Orange Legacy.
  1. Amanda Reply

    Hello, my name is Amanda Gray I was diagnosed I had a tumor in my fourth ventricle Terry Miss Finance that this did not happen until I was 37 at first that episode in my brain feel in my school putting pressure on my spine and brain both and leaving me your life on my left side, most doctors haven’t even heard of this neither had I have course until it happened to me my father is a Vietnam veteran he’s 100% disabled from agent orange he has a lot of the same Endocrine disorders , tumors and rheumatology problems.
    I’m trying to get champva insurance as a agent orange survivor, Has anyone revived this?
    Most people have days when we’re a bit forgetful – when we can’t remember what we were going to say, or why we walked into a room. But for some, brain fog is a real symptom that results from chronic illness or certain medications, and it’s a lot more serious than just forgetting something small every once in a while. Brain fog can cause confusion and significantly affect your short-term memory and mental acuity. It can be extremely frustrating to be unable to recall important conversations, names or dates, and this can have a major impact on your social and/or professional life – especially when others don’t understand what you’re going through.
    Brain fog can be one of the most challenging parts of living with a chronic illness, but i you’ve experienced brain fog, the following may sound all-too-familiar.

    1. “Struggling to hold a conversation with someone because you know what you’re trying to say but you can’t seem to get it from [inside] your head to outside your mouth.”
    2. “Realizing you just took your morning meds. Twice!”
    3. “I call mine ‘Dory brain.’ My family constantly tells me to write things down. There are several problems with this suggestion. One is remembering to write it down, two is remembering where I wrote it down and three is remembering to remember I wrote it down.”
    4. “The hurt and frustration when people think you don’t listen/pay attention to them when you are trying your hardest to act normal.”
    5. “Getting lost while driving to familiar places. This one is scary.”
    6. “Forgetting whole conversations I’ve had with family. When they bring up something they’ve told me I have to tell them I don’t remember. It’s so frustrating.”
    7. “Solving a problem of any kind is like moving your mind through molasses, and you aren’t really sure you’ve solved it.”
    8. “Finding the car keys in the fridge.”
    9. “I constantly wander around my home in a daze because I literally have no clue what I’m supposed to be doing. I forget what I’ve gotten up for, what I went to the kitchen for. I am always lost and confused in my own home.”

    10. “I put a password on my tablet this morning then shut it off and five minutes later I have no idea what my password is and am locked out of it!”
    11. “How tough it is to explain to friends and family that you’ve been put on Alzheimer’s medication and Ritalin to help your focus and memory at the age of 26.”
    12. “Even in my dreams I’m lost or I’ve lost something. I wander around in maze-like settings trying to find my way out. Last night I spent an entire dream trying to find my car! I can’t catch a break even while I sleep!”
    13. “Having a massive internal vocabulary, but consistently and reliably resorting to words like ‘thingy.’”
    14. “To be physically present but feel like you’re completely somewhere else. It’s impossible to understand unless you experience it.”

    15. “I hate that my life is passing me by while I’m in a daze, unable to be fully present with people I love and experiences I want to savor. I live my life in slow motion but around me everything is speeding by and it terrifies me how much of life I am missing.”
    16. “In conversation I will often say the wrong word or mix up phrases. Someone will usually say, ‘Don’t you mean…?’”
    17. “How frustrating it feels to go from having a photographic memory to what I jokingly refer to as ‘Swiss cheese brain.’ I even print out little sheets that have each med and the time I take it on them that I keep next to where my meds are (with a pen) so I can cross out the time after I take a dose, so I don’t forget that I took it already.”
     
    18. “Second-guessing myself even with regulatory matters in which I was recently considered an expert.”
    19. “The other day I spent 15 minutes looking for my glasses. I was wearing them. It didn’t even occur to me that I could see.”
    20. “You can be fine one minute and be in good conversation, and then it hits you like a bolt… you can’t remember what you were talking about.”
    21. “Skipping whole chunks of a day in a blur, then having completely lucid and efficient thinking another day, then being exhausted and foggy at night again.”
    22. “People often feel entitled to know more about my medical condition than I want to share because they want to know why I seem so confused. Of course, then I usually get a ‘Well, it’s just like getting old’ comment. Having brain fog isn’t like getting old. Especially pharmaceutically-induced brain fog, like I have.”
    23. “Having to set phone reminders to take medication, to do housework or even to make sure I’m drinking enough water.”
    24. “Talking in circles. Saying the same thing over and over trying to finish a thought.
    25. “Forgetting your list of things not to forget when going out.”
    26. “Sitting down for a minute to plan your day and realizing a moment later you’ve been actually sitting trying to chase your thoughts for half a day. Then, you get confused wondering where the time went.”
    27. “Getting anxiety when you call someone because you aren’t sure if you’ll be able to find the words to talk or if your mind will go completely blank.”
    28. “Notes are taped all over my house. Reminders go off on my phone constantly. I must do something the moment I think of it or write it down or it’s lost in the vortex of fog.”
    29. “Sometimes when I am doing housework I need to solve a problem, and it used to come so easily, but when the brain fog hits, all bets are off. It’s like I’ve forgotten everything I’ve learned. Like showing up for an exam on a subject you’ve never studied.”
    30. “How completely terrifying it is when you’re unable to find the simple words you need to express yourself, and how degrading it is to have someone snidely correct you for a mistake such as misspelling or misspeaking a common word because you’re in a flare.”
    31. “Looking at an object knowing you know full well what it is, but can’t remember what it’s called. Example: table, microwave, couch, fork…”
    32. “I never win an argument because most times I forget what I am fighting for.”
    33. “It’s more than just a mild case of just forgetting someone’s name in a conversation or forgetting to do something on your to do list. It’s talking to someone and being in the middle of a sentence and completely forgetting what you were saying. Your mind goes completely blank and you can’t get it back.”
    34. “I had a great answer, but I forgot what it was by the time I went to type it out.”

    My Chronic Illness Life,
    10/30/2017 Fighting to be alive,
    AGray

    • LOVME Reply

      So sorry for delayed response. It sounds like you have Chiari. Here is a link where you can get further info>>>http://lovme.org/important-links-for-children-of-veterans-exposed-to-agent-orange/

  2. Donna Bennett Reply

    I was just diagnosed with Chiari I Malformation and see the neurosurgeon next week. My father receives partial benefits from AO exposure. My sister has also had two back surgeries and is unable yo work. How you go about proving this is AO related?

    • LOVME Reply

      So sorry for delayed response. It is very difficult to prove because there really are no studies. Legislation was passed but nothing has happened as a result of this huge effort. All the info we have at this time you will find at this link>>>http://lovme.org/important-links-for-children-of-veterans-exposed-to-agent-orange/

  3. Kristen Reply

    Hi. My dad was in Vietnam and was exposed to agent orange. He told me the drums that carried the agent orange were used for water for them to shower with. I have chiari Malformation and they think I may have an autoimmune disorder as well. Any info would be great

    • LOVME Reply

      So sorry for delayed response. Here is a link where you can find more info and some answers>>>http://lovme.org/important-links-for-children-of-veterans-exposed-to-agent-orange/

  4. PEGGY Reply

    THOUGHT you previously had some sort of list of DOCTORS WHO UNDERSTOOD AGENT O. ? DESPERATELY SEEKING SUCH – HUSBAND DYING FROM A.O.

    • LOVME Reply

      I’m very sorry to hear about your husband, Peggy. You are right we used to have a list on our blog. I guess, somewhere along the line, most of the info was lost. I do have a short list (Dr. Goodenough is retired now) at this link>>>http://lovme.org/medical-doctors-support/

  5. Pingback: LOVME » IMPORTANT LINKS FOR CHILDREN OF VETERANS EXPOSED TO AGENT ORANGE

Leave a Reply to LOVME Cancel reply

*

captcha *