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" ARACHNOIDITIS SOCIETY OF AMERICA " PLEASE HELP THIS TO HAPPEN\
I AM A SUPPORTER OF THE "Arachnoiditis Foundation Inc." Founder
Dr. Antonio Aldrete MY NEW EMAIL ADDRESS Winglett@Bellsouth.net
FOR ANY INTERVIEWS OR PAST TV INTERVIEWS CONTACT ME (ONLY AT THE ABOVE EMAIL ADDRESS) WILL HAVE A NEW PAGE UP ON Bellsouth soon.
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My GOALS
1. Educate this disease to our nations
2. Research
3. Research USE OF DEPO MEDROL WITH EPIDURALS
4. Toll free number for the Arachnoiditis Society
5. Board of Directors (paid)
6. To increase Physician education to recognize, symptoms, diagnosis, complications and treatments.
7. Public relations Firm getting the information out for us..
8. To establish a Fund to assist people with medical needs, grocery bills, utility bills, single parents when children are involved or even for those parents that need help to give their children needs that they are unable to.
9. A support system for those having difficulty with the WORKERS COMP SYSTEM.
10. Biggest...praying to God everyday to help us make this happen.
11. Praying that others will join this force to make this happen..Physicians, volunteers, supporters, donations to get this organization nation wide. As other diseases have supporters and organizations..
12. Support system for ones with problems with any other insurance company.
13. Writing all Governors, of each state to inform them of educating this disease.
14. New drug coming out on market, DepoCyt) states Pts. receiving this should be treated concurrently with dexamethasone to reduce the incidence and severity of arachnoiditis, If a person doesn't know what Arachnoiditis does to you? then ask one that has it. All medical technology needs to be informing pts. more of these side affects. Arachnoiditis is nothing like nausea and vomiting!! It is an horrible disabling disease.
Sincerely I remain,
Linda Inglett
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WHAT IS ARACHNOIDITIS ???
Arachnoiditis, is an autoimmune disease that begins with inflammation of arachnoid (a weblike ) membrane, the middle of the three membranes --dura--arachnoid--and pia-- that cover the spinal cord and brain. In a symposium on Arachnoiditis in 1978, Dr. Charles V. Burton Institute for Low Back Pain Care, Minneapolis, Minnesota, defined the three stages of Arachnoiditis. The first stage is called RADICULITIS, starting with inflammation of the nerve roots constituting the pia-arachnoid. Blood rushes to the area and there is swelling of the cauda equina (the end portion of the spinal cord and roots of the spinal nerves). Production of minimal connective tissue growth and strands of collagen between the nerve roots and pia arachnoid begin to form. In the second stage called ARACHNOIDITIS, there is proliferation of the fibrous tissue and collagen deposition. The nerve roots are now adherent to each and the pia-arachnoid. IF FOREIGN BODY IS PRESENT, ENCAPSULATING CYSTS MAY BE FORMED. If an agent such as Pantopaque (an oil-based contrast medium) has been used, this reaction is commonly seen. In the third and final stage, adhesive arachnoiditis, therer is pia-arachnoid proliferation with dense collagen deposition. This produces complete encapsulation of the nerve roots which become progressively atrophic. The process may involve the nerve root sleeves alone, or it may extend involve the subarachnoid space. There is strong evidence to suggest that the severity of "arachnoiditis may also relate to autoimmune factors.
In 1978, there was a article in Spine by G. Benner which addressed the postoperative classification of arachnoiditis. It is known as the " Benner Classification in Arachnoiditis ".
0--Extradural compression (spondylosis/stenois)
I--Postoperative changes--local
II-Arachnoiditis---single level
III--Arachnoiditis--multiple level
IV---Block secondary to Arachnoiditis
V----Arachnoiditis--progressive or ascending greater than two levels above operative site.
Information collected above... I give these credits to Dr. Charles Burton & the Back pain Association and Thank him from the bottom of my heart...
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For the song " Walk Softly" snsphoto.net or 1-800-315-3996
Arachnoiditis.com Dr. Antonio Aldrete Founder
Visit Kara Bogart site karabogart.com
Here is a paragraph from the Mini-fact sheet on Arachnoiditis put on the web by the National Institue for Neurological diseases.
Research: Within the NINDS research programs,Arachnoiditis is addressed primarity through studies associated with pain and nerve damage with the utimate goal of reversing debilitaing condition such as Arachnoiditis. NINDS has notified research investigators that it is seeking grant applications both in basic and clinical pain research. The national Institute of Arthritis and Musculoskeltetal and skin disease (NIAMS) AND the National Institute of Dental (NIDR) may also be conducting research on pain.
Now with some of this other information I am receiving, " I am geting some more clear pictures".
There is more reseach being done on PAIN THAN ON THE DISEASE ITSELF OR OTHER SPINAL CORD DISEASE.
OURS IS CALLED AN " ORPHAN " DISEASE " AS I CALL IT: Due to they don't understand it or don't know it exists " I am receiving letters from all over the world people crying for help, and can't find physicians that can treat it, number one there is no treatment or cure so how can one choose what to do??? They have losed their jobs, some homes and actually don't know what kind of physician to go to. Some that have left their area and gone for help to find what is wrong with them and were told they have " arachnoiditis ". (As , I had to do), then they come back to their area cause their insurance company isn't going to pay for the going far away. (again this happen to me) But, they sent me to the University to get a second opinion and then decided they would not keep paying for me going there. (I honestly beleive from the bottom of my heart or spine that people with this disease needs to be at an University so they can get a grip on this disease so studies can be done and turned over to a Board of Doctors to discuss and decide what should be done to help us.) It is the same with cancer, (my father had it and he should have been in a place that studies were kept( What is the Cancer Society for????) I never saw anyone from the cancer society to visit and check on him for having cancer, (specially the money that we have giving for this cause) this could have possibly helped someone else with this problem.?? how can the cancer society run without information giving to them if in the case of them not getting all cases, I mean anyone with cancer ) I beleive the whole medical society needs a change, a patient with a certain disease needs this society involved. This patient's file is very important due to their History. History of patient is very important in finding cures. "HISTORY "DID WE FORGET THIS WORD " HISTORY" Without a history how can you tell the story.
I went to Emergency room one night due to had no physician yet, due to my insurance company had taken me away from the ones that was treating me, told me when I need something til they could find me a physician just go to the Emergency room, Yeah!! I did this and they looked at me and stated on one visit after being there for over 3 hours. " You need to go back to your physician we can't treat you " then on one Emergency room visit when I told him I had " Arachnoiditis", he told me " let me go look in the book about this disease.
" this is what happen to me. Which I respect he did this. "
but inflammation is about all it stated..." what about all the other problems that go with it. I sure have had many and have not been told what caused it??!!
What I personally would like see happen...and many of my peers that are writing me crying, giving up, can't find physician they can trust, and feel they are all alone with this disease. THEY ARE NOT ALONE" THAT IS WHY WE MUST EDUCATE THIS AND GET AN SOCIETY GOING TO STEP IN AND HELP GET RESEARCH GOING.
WE ARE NOT LOOKING FOR A CURE , WE ARE LOOKING FOR SOMEONE TO CARE, UNDERSTAND THAT WHAT WE HAVE DOES EXISTS AND WE MUST MOVE FORWARD.
AS, A FRIEND PHYSICIAN TOLD ME: " I am not that familiar with navigating the waters of academe, but if you can offer or know someone who can help us, many medical schools or researchers would jump over the moon for us, since much government funding has dried up. As you can see from the above fact sheet , a good deal of the research is slanted towards "PAIN RELEIF,"
which is great, but I think we need more answers on the basics patho-physiology of the disease (ARACHNOIDITIS).
1, WHY DOES THE DISEASE OFTEN TAKE YEARS TO DEVELOP LONG AFTER THE INCITING INCIDENT, BE IT TRAUMA OR MYELOGRAM CONTRAST MATERIAL, ANY TYPE ???
2. WHY DOES THE DISEASE PROGRESS?? IN THE CASE OF OIL BASED "DYES" OR " WATER BASED DYES" (which I had) THIS COULD BE EXPLAINED BY THE SUBSTANCE LINGERING IN THE SPINAL CANAL AND CONTINUING TO IRRITATE THE ARACHNOID. BUT WHY ONLY IN A MINORITY OF PEOPLE WHO HAVE HAD MYELOGRAMS? THERE MUST BE OTHER FACTORS INVOLVED. IN CASE OF TRAUMAN FROM SURGERIES (THEY SAY YOU CAN GET IT) THERE IS NO REMAINING SOURCE OF IRRITATION OR INFLAMMATION. WHAT KEEPS THE DISEASE GOING IN THIS CASE???(BUT IN ALL CASES i HAVE FOUND THAT MOST PEOPLE THAT HAVE THIS DISEASE HAD MYELOGRAMS, PANTOPAQUE, OMIPAQUE ECT...)
3. WHAT IS THE COMMON DENOMINATOR BETWEEN THESE ETIOLOGIES???COULD AN AUTO IMMUNE PROCESS BE SET UP THAT KEEPS THE DISEASE PROGRESSING? I HAVE SEEN NO RESEARCH EXPLORING THIS POSSIBILITY.
There are many questins to be answered, and if you are in a position to get help or grant money, we can specify what area of research we are willing to fund. I honestly think the pharmaceutical companies are funding money for research on PAIN, (PACIFIER) like a baby needs. Do you think it has been great living on pain meds, meds, meds, meds, that you don't even know they are going to help. One solution is to get news coverage to get help and backers maybe a pharmaceutical company to fund research on this disease.
However I would like to see more work on the basic science of how the disease is caused and how and why it progresses.
Sincerely I and others pray and hope each day somebody will step in and help us. Govenors, Congressman/women, Senators, News, anything that will step in and help us with knowing someone is listening and willing to help...No one wants to sue, I feel this also will prevent any suits and help keep medicare /medicaid down. If we start now and not wait to late that this disease happens to many others.
Want you help us ?? Please..
Linda Inglett
I toast your " Efforts"
Arachnoiditis.com Founder Dr. Antonio Aldrete
I salute this physician for standing up and helping us that have
been disbeleived. Get the book " Silent Epidemic" at this web site
also : We need your help !! "Walk Softly" new song for Arachnoiditis people or who ever has back pain or spinal disorder. Please also this song is for anyone. Your donation of 20.00 will get this beautiful song. Part of these funds will go to
help with this disease.
Kara Bogart has performed this song and is now released for ordering. Dedicated to Linda Inglett (she has such a beautiful voice when she performed this song to me, no one can sing this song as she did, her heart and prayers was "felt" when she sang this song. It was so "touching and lifting". Now I have dedicated this song to ARACHNOIDITIS FOUNDATION INC. FUNDS WILL GO FOR RESEARCH OR TO HELP IN ANY WAY THE FOUNDATION NEEDS THIS MONEY. PLEASE GET YOUR COPY TODAY. ON LINE www.snsphoto.net OR CALL 1-800-315-3996 S&S PHOTOGRAPHY 2365 Whitesburg Dr. Huntsville, Alabama 35801
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