http://www.gaia-therapy.com/published/article003.shtml

Arachnoiditis - The Deep Dark Secret of the Medical System
(Entitled "Arachnoiditis - The Risk You Take When Opting for Spinal Surgery" on Natural News)

by Heidi Stevenson
(Originally published on News Target)

André Gorz, founder of the French magazine, Le Nouvel Observateur, the most popular Paris news magazine today, and a brilliant journalist and philosopher, died in a suicide pact with his wife on September 24, 2007. They committed suicide because she could no longer bear the pain her disease, called by the strange name of arachnoiditis, caused and he could not live without her.

On Lawyers and Settlements, Zana G. describes her life with arachnoiditis like this: It has "decimated my personal and professional lives, eradicated my hobbies, killed my love life, laid waste to my ability to travel and vacation with family and friends, made me a prisoner to my house, and my bed, driven my friends and family away."

This strangely-named disease is the deep, dark secret of the medical system. Virtually everyone with this condition would give an equivalent description of his or her life.

Arachnoiditis. It sounds like something to do with spiders, not the name of a disease that produces never-ending pain. But that's what it is—one of the most horrible conditions that can be imagined. It produces paralysis, numbness, weird sensations, loss of bowel and bladder function, memory loss, spasticity. Inability to sleep. Vision loss. The list of symptoms goes on, but let's not forget death—though its sufferers may see it as a release. There is no treatment, at least not from the medical system.

Okay, arachnoiditis is bad—but what exactly is it?
Caused by foreign substances entering, or damage to, the spinal canal, arachnoiditis starts as a massive inflammation of nerve roots and the arachnoid, one of the three meninges (membranes) that surround the central nervous system. This is where the disease's funny name comes from: arachnoid for the name of the membrane initially inflamed and -itis for "inflammation of". The inflammation is chronic. It literally never ends and produces constant burning pain in the spine. This, though, is only a partial description of the damage done.

Scar tissue grows in the cerebrospinal fluid, which then impinges on nerves, even choking them completely. It pushes nerve roots aside and can ultimately fill an entire area of the spinal canal. This causes a multitude of symptoms, which can affect any area of the body. Any organ can be affected. If the nerve root that supplies an organ is damaged, then that organ malfunctions.

This is not all! There is also an autoimmune element to the disease, which can result in an array of problems, including fevers, nausea, vomiting, and rashes. Most arachnoiditis sufferers develop spasticity, often to the point of feeling like their joints are being pulled apart—something like being on the rack. Loss of ability to walk and even the use of hands and arms can result.

Other problems that may result from arachnoiditis include syringomyelia, which is a cyst in the spinal cord, cysts of the arachnoid membrane, and hydrocephalus, which is water on the brain. Bowel and bladder dysfunction are common. Memory is often badly affected. Weird sensations, like a buzzing feeling all over, ants crawling under the skin, or electric-like shocks are common. As you can imagine on reading this, depression is a typical companion.

Anyone with arachnoiditis will tell you, though, that the single most significant issue is pain—ongoing, neverending, unbearable pain.

What causes arachnoiditis?
Who gets this horrible condition with the laughable name? Though it can be the result of disease, such as meningitis, or severe injury to the spine, the vast majority of cases are caused by doctors. Any procedure that invades the spine can cause arachnoiditis. That's right, any procedure. That includes any spinal surgery. Myelograms. Epidurals for any purpose, including childbirth anesthesia or steroid injections for back pain. Spinal taps to diagnose disease. Blood patches to cure spinal headaches, themselves caused by invasive spine procedures.

Epidurals

This is a treatment by doctors that involves injecting substances into the epidural space immediately outside the spine. Officially—meaning according to members of the modern medical system—there is very little risk of arachnoiditis from epidurals.

However, DepoMedrol, a steroid drug manufactured by Pfizer used extensively and routinely for epidural steroid injections, is known to cause arachnoiditis, among other severe problems. It is so well known that Pharmacia, the original manufacturer of DepoMedrol, issued a warning that it should never be used for either epidural or intrathecal (inside the spine) use and named arachnoiditis as a potential outcome. A copy of the letter sent to doctors by Pharmacia can be seen on Depo-Medrol-Did-It-Harm-You.

Nonetheless, DepoMedrol and other equivalent toxic chemicals are routinely used by doctors. Whenever you hear of an epidural for back pain, what's being done is injection of toxic materials.

To add insult to injury for all those people who are put at risk of arachnoiditis from epidural steroid injections, a metastudy reported in the April 2001 issue of The Journal of Neurology, Neurosurgery, and Psychiatry, shows no benefit from steroid injections for back pain. In other words, doctors routinely give and pressure patients into having epidurals, in spite of the grave risk of a life-shortening, horrifically painful, and debilitating disease.

How many women would agree to having epidural anesthesia during childbirth if they knew that one risk is a disease that can produce pain as severe as that of giving birth every day, all day, for the rest of her life? That is, quite literally, the risk she's taking. Yet, what woman is ever warned?

Dr. Lewis E. Mehl-Madrona and Morgaine Mehl-Madrona state, ". . .these complications are not extremely rare. . . women are not receiving adequate informed consent about what these complications are and their accompanying frequency." Their paper, "The Medical Risks of Epidural Anesthesia" outlines these risks and includes arachnoiditis. Tellingly, they refer to six women who had gotten arachnoiditis from epidurals during childbirth, adding, "3 were permanently confined to a wheelchair three years after their initial evaluation."

Spine surgery

Spine surgery is likely the most common cause of arachnoiditis. More than half a million spine surgeries are done every year, most by neurosurgeons or orthopedic surgeons.

There are no requirements that doctors keep track of the number of surgeries that have gone wrong. Indeed, many that have gone bad are considered successful by the doctors who performed them. As they see it, if what they set out to do was accomplished, then the surgery was successful. What happens to the patient seems to be irrelevant.

Myelograms

Several years ago, this was the most common arachnoiditis cause. The dyes injected into the spine are extremely toxic. Because of this, there has been a change in the dyes. They've been made more dilute. Of course, this means that toxic materials are still being injected into the most delicate and sensitive area of the body, an area where anything from outside can be toxic, even blood. The result is only a reduction of arachnoiditis cases caused by myelograms. How much of a reduction? Who knows? The medical system doesn't do studies on arachnoiditis.

What are the odds?
What are the odds of getting arachnoiditis? That's a very good question. It seems that no one keeps records on it. Doctors avoid diagnosing it, often using clever terms, like Failed Back Surgery Syndrome, which gives the impression that the surgery simply wasn't successful. This often hides the fact that the patient was left with a completely new and incurable condition.

Diagnosis, which can usually be done quite easily via MRI, is often evaded with terms that describe the disease, such as fibrosis or nerve root clumping, but fail to use the term arachnoiditis itself.

There are no statistics on arachnoiditis patients. Those with the disease often feel like they are the medical system's deepest, darkest secret. All too often, they are treated accordingly. A look at some online support groups will quickly show the utter lack of support that many, if not most, of these patients receive, from evasiveness to outright lies about whether they have the condition. They are often not told for years, if at all, that they have the disease.

Then, when patients do get a diagnosis, they are often refused services from doctors. Many tell stories of being refused care simply because of their diagnosis, or as an unstated, but obvious reason for it. Others have tales of self-styled specialists, members of the medical profession who take their money—often thousands of dollars. If they're lucky, these doctors return nothing for the money. If not, then they are sometimes subjected to further invasive procedures. None of these can help and all can make the condition even worse.

Why aren't people informed of this risk when invasive spinal procedures are proposed? The standard response of doctors is that it's so rare there's really no point—but try telling that to its thousands of victims.

The majority of cases today appear to be caused by spine surgeries. According to a report in PubMed, as many as 40% of all back surgeries result in Failed Back Surgery Syndrome. Different reports from the medical system offer numbers ranging from 10% to 40%. How many of these cases are actually arachnoiditis is unknown, but that is only because the medical system does not keep records. They appear to avoid knowing. One brave doctor, Antonio Aldrete, who has dedicated his practice to victims of arachnoiditis, estimates that 15-20% of back surgeries result in Failed Back Surgery Syndrome.

Even if the number is the lowest estimated, it means that well over 50,000 cases of Failed Back Surgery Syndrome are created every year: 10% of more than half a million back surgeries, as reported by the American Association of Neurological Surgeons in 2002.

Here is an example: Eight years ago, 15 people were surgically treated for a condition called Tarlov's cyst. Many gained relief for a time. Now, though, all are worse than they were before the surgery. All have been "diagnosed" with Failed Back Surgery Syndrome, 12 of them officially diagnosed with arachnoiditis, and the other three are permanently confined to wheelchairs.

Is this an extreme case? Who knows? The medical system refuses to do studies or cooperate in any way with finding out the extent of the disease—though doctors continue to say that it's so rare, it's not worth considering. But what are they basing this statement on?

So, why don't doctors tell people who are being offered or, as often happens, pressured into invasive spine procedures that they stand a significant risk of ending up with an incurable, debilitating, and horribly painful new disease? That is a good question—one that this author believes can only be ascribed to the idea that the current medical system is utterly corrupt.

There seems no legitimate answer other than that doctors operate and do other risky back procedures primarily to fatten their wallets, without consideration for the lifelong risks their victims face. Certainly, the concept of informed consent is a joke when it comes to invasive spinal procedures.

How do you protect yourself?
Every person who is told that an invasive spine procedure is needed should first say, "No." Don't worry. If you live in the United States, it's unlikely you'll have trouble getting the doctor to agree to the procedure later if you decide to take the risk. However, the single most important thing to realize is that the only person who must live with the effects of arachnoiditis is you, the person inside your skin. No one else must suffer with the pain and debility. Remember that, in exchange for a chance of improvement, you are risking spending the rest of your life in even worse pain and debility.


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References:
"Life after Depo-Medrol—Sheer Hopeless Hell", March 10, 2006, Lawyers and Settlements

PubMed, January 2007

"Understanding Failed Back Surgery Syndrome", The Nurse Practitioner, September 2003

Dr. Aldrete's website

"Medical Risks of Epidural Anesthesia During Childbirth", by Lewis E. Mehl-Madrona and Morgaine Mehl-Madrona

"AANS Neurosurgical Statistics Report—1999 Procedural Statistics"

Letter to doctors from Pharmacia, Depo-Medrol manufacturer, stating that it is not approved for epidural or intrathecal use

For a good discussion of drugs in labor, with a focus on epidurals, see this article, originally published in Mothering Magazine in 1999

http://tarlovdisease.populus.org/rub/2



Foundation News Updates
Research Announcement
November 2008


The National Organization for Rare Disorders’ Medical Advisory Committee has announced that Anne Louise Oaklander, M.D., Ph.D will receive the Tarlov Cyst Disease Foundation’s grant for Tarlov cyst research.

Dr. Oaklander is an attending physician in Neurology and Neuropathology at the Massachusetts General Hospital and Associate Professor of Neurology at Harvard Medical School. She directs the Nerve Injury Unit, which she founded in 2002 at Massachusetts General Hospital, following her fellowships at Johns Hopkins. Dr. Oaklander works in the emerging field of nerve injury and neuropathic pain and is internationally recognized for her research profiled in Science and New Yorker magazines, as well as in print and broadcast news media.

We are excited about Dr. Oaklander's research with the Foundation's grant and hope that her project will put us one step closer to improved diagnosis and treatment outcomes for Tarlov Cyst Disease. Dr. Oaklander’s publications should help educate the medical community and public alike about the diagnosis and treatment of Tarlov cysts.

Tarlov Cyst Disease Foundation Board of Directors

The Researcher Selection Process:
Requests for research proposals were sent out in March 2008.

Initial Research Proposals were received in May 2008.

NORD's Medical Advisory Committee extended invitations for final proposals from the research grant applicants July 2008.

Full Research proposals were received September 8, 2008.

Medical Advisory Committee selected the researcher/grantee November 2008!