The Chiari Informer

Today I was directed to a web site that insinuates that the chemical Agent Orange that was used in the Korea and Vietnam wars causes neuro-tube deficits. You can read it here.

Agent Orange Korea

Now I have traced family members health to try to trace where our family got Chiari and all of its related disorders.
I can go back to my Maternal Grandmother's father was from Poland and he and his father worked in the coal mines till my Great-Grandfather came to the US via Ellis Island. He met my Great-Grandmother another Polish National at Ellis Island and they had 5 children. One of those children was born with Spina Bifida. My Grandmother suffered from Rheumatoid Arthritis, female problems, digestive problems, breast cancer... etc. My mother suffered from Pseudo Tumor Cerebri, several back surgeries, bowel and bladder issues, fibromyalgia, migraines, hormone issues, diabetes and strange chemical reactions to meds...and mental illness etc. My maternal grandparents lived most of their adult lives in the small town in NW Ohio "Delta".
My paternal Grandfathers family were mostly farmers. Now farmers used chemicals way before there were labels on anything. They would stir up barrels of the junk with their hands all the way up to their arm pits at times. My paternal grandparents died of cancer. Grandmother died at the age of 34 of internal organ cancers and my grandfather lived to be 70 and had beat cancer a couple of times but ended up passing with pancreatic cancer.
Sorry if I am boring you right now but there is a point to all this ramblings trust me.
My health has been rambled my whole life with one thing after another. In recent past 10 years I have been diagnosed with Rheumatoid Arthritis, Lupus, MS, Lime, PCOS, Fibromyalgia, diabetes and then most recently Chiari Malformation I with pituitary and hypothalamus dysfunction and Pseudo tumor cerebri/Intercrainial Hypertension.
Fast Fwd. to my youngest son "Brutis". He was always a odd type of a kid having all sorts of strange quirks is what we were told. He was always breaking something and always throwing up. NEVER did this child sleep EVER! Then it was that he had ADHD, then Asburgers Autism, then it was he just needed a swift kick in the ass to straighten him up (It was our fault he was a brat) and lastly thought he had autistic personality disorder. One last test was a brain MRI..... Then our whole world as parents went from 0-100mph in 5 seconds flat. "Brutis" had what they first called an abnormality low lying tonsils. ( I asked if he needed his tonsils taken out LOL) Nooooo the nurse said, its not in his throat it is in his brain. They were more worried about the arachnoid cyst he had on his brain stem. He needed brain surgery.
I went to work. Reading everything I could find. But was stuck on the low laying tonsils. I kept finding the term Chiari. So I called the neuro we were set up to see 2 months from then because it was not a big deal. The nurse I talked to said yes it is chiari but chiari is really common and not to worry. Thank God for my medical background and my MOM intuition. No sleep or anything for 2 months waiting for our appt with NS#1 He put "Brutis" on a steroid and diamox and wanted to set up surgery date. He said he would just go in and poke some holes into the cyst and he will be good to go. I was not impressed and just did not feel right about it. Fast Fwd again we went through a total of 7 NS in 3 states he has had a total of 9 major brain and spinal cord surgeries and 11 other procedures in the past 4 years. He has been in and out of wheel chairs and leg braces neck braces spine braces and walkers. We are a year and a half out from his last surgery. His diagnoses are now..... Chiari Malformation I, Pseudotumor Cerebri/Intercrainial Hypertension, Multiple Chemical sensativity, Ehlers Danlos Syndrome, Tethered Spinal Cord, Arachnoid cyst on the brain stem, Traumatic Brain Injury, Postural Orthostatic Tachycardia (POTS). I think I have it all listed there but you get the drift it is huge.
Now that you know the background here is what I have found out. This small town that I was born in "aprox. 2,800 residents" and that my parents both lived in most of their life has been the focus of some EPA investigation due to the Bronzing Foundry that was the towns business where most everyone worked and where the dust residue that built up at the foundry was given for free for backfill around homes in the town. Here is a couple of the links on the EPA study in Delta Ohio...
http://www.atsdr.cdc.gov/hac/pha/pha.asp?docid=636&pg=1

http://www.atsdr.cdc.gov/HAC/pha/pha.asp?docid=638&pg=1

http://www.epa.ohio.gov/portals/27/atu/AllOhioAirToxicsReport2010.pdf

Delta, Ohio's drinking water system has had bad readings in the past several years since the EPA started requiring them to test and notify residents of its findings back a few years ago. Their main pollutant is "Trichloroethylene" aka "TCE" There is another chemical that begins with a T that was in the reports that we the residents of Delta have received. "I will find one of the reports when I get to the Library and post it" but.... TCE is used to clean brass.... hummmmmm the same chemical that was found in the dust of the foundry that produces brass fittings that they spread all over the town and dumped onto the banks of Bad Creek to help in cases of flooding. This is what we have been drinking for years. Run off into our water system! When you pull up TCE one of its causes is neurol tube defects. Chiari and Spina Bifida is a neurol tube deficit.

http://healthychild.org/issues/chemical-pop/trichloroethylene/

Well.... Oh I may mention that bad creek is the creek I fell into ice skating fully immersed and the same creek us kids used to play around and in. But one of the research papers I have read in the past mentions something about spreading via grasses growing from the contaminated soil. When mowed down it will fly all of its toxins in the air and settle down some place else an d then that soil would be contaminated. My grandparents restaurant and carry out store was along bad creek, I lived back along the creek as a child too. Also I lived on both Lincoln and Wood Streets where they said the highest amounts were found. Is this all a coincidence or not?

I marry "Pappa Bear" and his family is from farming all their life. I remember seeing my father in law having a blue or green arm all the way up past his elbow from mixing chemicals. He has had cancer 2 times now. His sisters have all had female cancers and most of the females out of the 18 children passed away very young due to cancer. All of his brothers died of cancer. Strange hu???? My mother in law all had heart issues in her background.

So when "Pappa Bears" genes and my genes mixed our chemical toxicity ran amuck. Now we have our 2 children are stuck with these bad genes. "Princess" has POTS and EDS and you already have the list of "Brutis's" ailments.

So bottom line.... CHEMICALS ARE BAD ..
.
BUT.......

Get this I know of 12 people that have roots meaning their parents were born and raised in Delta, that have Chiari. I have no idea how many have been born with spina bifida. But autism is another big one for birth defects in our small town or only 2,800 people! So 1 out of every 200 aprox. is born from our town with Chiari. This is nuts! If the 12 had cancer then the EPA and world would be thinking about a cluster and would try to find its cause. But it is Chiari. NO it is not all that common as the first ns said. It is almost unheard of in society. Although there is thought to be aprox 300,000 of us almost as prevalent as MS. But still no one knows of it. What do we have to do to get the word out that this is real? That our future is looking like more and more chiarians are going to be born.

I WANT TO HEAR YOUR THOUGHTS ON THIS...

The Chiari Informer

Sunday, January 30, 2011

Things to ponder on....

Sunday, January 23, 2011

Blog Roll Call

ASAP Spring Gala

Conquer Chiari Walk Across America

First of many posts ... Day 1