Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis, and AA, as Adhesive Arachnoiditis.

The grim reality is that people with Arachnoiditis have been far too long ignored, some of this stemming from it being considered a "Rare Disorder." There are several causes for Arachnoiditis, and many years ago it came from the usage of Pantopaque, a chemical that helped docs diagnose where the spinal problem was...so many years ago, that MRI´s didn´t exist. That was my own cause for it. Once Pantopaque was taken off the market in the 70´s the medical profession thought that would be the end of ARC. And truly began to ignore it. Those affected often died of other causes before it truly evolved into the horrible chronic pain symptoms of scar tissue surrounding the nerves--and this takes sometimes up to 20 and 30 years. Hence docs really received little or no education in it. Although there are other factors involved in their ignorance. It is a very complicated story.

If you look for the Burton Report, you will see much more accurate information than what I can give you here. At this point there are practically no doctors left who have been trained or educated in it. Only the "old timer docs" KNOW, and remember, but are retired and no longer available. In my past I found Dr. Antonio Aldrete, who diagnosed me with a full Independent Examiner Report in 2010, provided so I could show my GP. You can google him....he has written extensively on the subject. But he is no longer in the United States, and when I saw him he was ready to retire.

The next doc I found in California was Dr. Tennant, and I only saw him ONCE before he RETIRED. He lives for the cause, is beloved in the ARC community, and has while he has now written that book he also dedicated his Foundation to Education, and much of it online to make it his research available and accesible to the world. He has a few staff members there who help him with the online educational bulletins. It is a shoestring operation, and his spouse helps out as much as she can. Because I´ve been there in 2017 I gained a huge appreciation for them. As I was leaving, I asked how much I owed. "Whatever you can," said the lady at the front desk.

You are right that we have been messed up terribly, thousands of us all over the world. There are videos and publications online that explain our situation....but not enough docs. Partly, I THINK, because as was explained to me at Yale Neurosurgery, there is ABSOLUTELY NOTHING that can be done. The risks involved in another operation to try to correct or clean out the scars on nerves are far too great. I was told several times by docs I trust (some friends), "DO NOT LET THEM GO IN AND OPERATE, OR YOU WILL BE LEFT IN A WHEELCHAIR." But Dr. Tennant´s online and published research is showing that there is a need to reduce neuroinflammation, for starters. He has an excellent Manual, and if you follow it step by step, you will gain insight into what he is doing now.

What I´m learning now at the Mayo Pain Rehabilitation Program blows my mind. After almost 10 years on narcotics, I am being tapered down, with little distress. Slowly but surely. I don´t know where you live, but this is another resource worth considering. It is a 3-week program that works on the basis of Physical and Occupational Therapy, Cognitive Behavioral Therapy and Medication Management. I´m in my 6th day and I am now walking without a walker or cane. WALKING! I had lost that possibility a year ago, so I´m amazed. And reading Dr. Tennant´s manual I see that a number of his recommendations are the same as this program´s. Stretching every day, for example. Walking as much as possible, and pushing yourself as much as you can.

Your best bet is to read all you can about ARC, the Spine, and Centralized Pain. And do look up the Tennant Foundation resources, really! He is retired now, and is doing the best he can...late 70´s, both he and his wife. And he´s done a huge lot to bring attention to this problem with other docs. But it´s been swimming against the tide, every wave at a time.

Keep the faith. I know it´s very, very hard. For the first time in many years I have HOPE. Take care,
Joan

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