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Life After Depo-Medrol - Sheer Hopeless Hell

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Complaining of a sudden localized hip pain, in January 2002, Dennis Capolongo, was diagnosed with a disc herniation and given 2 epidural injections of the steroid Depo-Medrol that resulted in two trips to the ER, a stint in the hospital, and horrific back pain that continued nonstop for months.

A short time later, when reviewing his original MRIs, new doctors found nothing to substantiate the disc herniation diagnosis or the need for Depo-Medrol. It is now believed the hip pain Dennis experienced was caused by a sprain and not from any back problem.

However, he now is forced to live with arachnoiditis caused by epidural steroid injections (ESIs). "Arachnoiditis describes a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord," according Dr Robert Filice, MD in Depo-Medrol: Another Good Reason to Choose Prolotherapy.

The inflammation sometimes leads to the formation of scar tissue and adhesions, which cause the spinal nerves to "stick" together at which point arachnoiditis begins to interfere with the function of the nerves, causing symptoms such as numbness, tingling, and a characteristic stinging and burning pain in the lower back or legs, according to Dr Filice.

There is no cure for arachnoiditis and treatment options are limited to pain relief similar to treatments for other chronic pain conditions.

Dennis has organized the "End Depo Now Campaign" (EDNC), a grassroots advocacy group seeking to have Depo-Medrol banned from epidural use. Research by EDNC has determined:

  1. there are only two natural ways to contract the condition. One is through trauma to the spinal cord; the other is through contamination of the Cerebro Spinal Fluid (CSF) by foreign bodies such as bacteria and viruses, which cross the blood brain barrier.

  2. there are only two ways to contract the condition through medical procedures. One is through surgery, the equivalent of natural trauma, that can include blood contamination of the CFS; the other is through injecting foreign substances into the CFS, which causes the body to react in exactly the same way as it would to bacteria and viruses.
An ESI is a dangerous procedure. "When administering epidural injections, it is critical to recognize the risks associated with the introduction of potentially neurotoxic substances into the subarachnoid space, from which 40% of spinal fluid is produced," according to Milestone Scientific in a March 6, 2006 press release.

The only possible way Dennis could have contracted arachnoiditis is through the improper ESI because had no back problems. "I am living proof that a perfectly healthy person will suffer a spinal cord injury when subjected to this treatment," he says.

In the March 1999 paper, Adhesive Arachnoiditis Syndrome, Dr Sarah Smith summarizes the complexities and progression of the of disorder.

In the first stage, the spinal nerves are swollen and the adjacent blood vessels distended and the subarachnoid space disappears.

During the second stage, the scar tissue increases, and the nerves become adherent to each other and the dura.

In the third stage, adhesive arachnoiditis, involves complete encapsulation of the nerve roots and the scarring prevents the arachnoid from producing spinal fluid in that area.

Depo is the principal cause of arachnoiditis in the US. Dr Charles Burton maintains that almost all cases of clinically significant adhesive arachnoiditis are caused by Depo-Medrol.

Dr Burton is an expert in the treatment of complex spinal problems and has become a well-known advocate for arachnoiditis sufferers by promoting public awareness of the condition. His publication of the Burton Report in 2000 has raised awareness world-wide.

Depo victims must endure a lifetime of agony with a disability that affects every aspect day-to-day living. Arachnoiditis patient Zana G. describes her life as "sheer hopeless hell."

The condition, Zana says 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."

"We have no cures, no treatments, no research into this condition, whatsoever," she says.

A major complaint heard from many victims is that ESIs are being administered off-label for conditions not approved by the FDA, without the patient's knowledge of their unapproved status.

The dangers associated with this off-label procedure has even prompted Pfizer, the maker of Depo, to post a warning on its web site against epidural use which states in part:

DEPO-MEDROL Sterile Aqueous Suspension is contraindicated for intrathecal administration. This formulation of methylprednisolone acetate has been associated with reports of severe medical events when administered by this route.
The Pfizer site also lists adverse reactions reported with the epidural administration as:

Arachnoiditis Bowel/bladder dysfunction
Meningitis
Headache
Paraparesis/paraplegia Seizures
Sensory disturbances
These warnings are nothing new. As far back as 1981, Upjohn, the Depro manufacturer at the time, stated "we would advise against the epidural/extradural routes of administration because of possible adverse reactions".

These warnings are rarely discussed with patients which means they have no opportunity to make an informed decision about whether or not to undergo the procedure after assessing the risk/benefit of the injections.

Advocacy groups say patients should always be advised when a drug is not approved. "Consumers should be told when they are receiving a drug for off-label use and make an informed decision if they want to accept the risk," according to pharmacist Larry Sasich, of the consumer watchdog group Public Citizen.

Dennis says patients will not be given this information unless they specifically ask for it. "Even then," he says, "there is no guarantee that their doctor will even know this latest update."

Therefore, a main goal of EDNC, he says, "is to have the FDA reevaluate the efficacy and safety of this steroid when used "off label" for epidural injections with the hope that they will label the steroid as contraindicated for epidural administration."

The fact is, there is no proof that Depo provides any benefit. According to the Injectable Corticosteroid Suspensions, 28 February 2006, Products-description, by the American Society of Health-System Pharmacists: "Currently, no clinical evidence conclusively shows that epidural corticosteroid injections are either effective or ineffective for relieving low back pain."

"Limited clinical data are available on the epidural route of administration," the group explains, "and use of the product for this indication is not included in the labeling."

"In addition," Pharmacists warns, "some preparations contain benzyl alcohol, a preservative that is not suitable for epidural injection," citing Glucocorticoids In: Drug Facts and Comparisons. St. Louis, MO: Facts and Comparisons; 2000:320-332.

By using the Freedom of Information Act, Dennis discovered that over 350 deaths and over 15,570 severe neurological events were reported to the FDA between 1998 and 2002 on person who received Depo.

In addition, EDNC conducted a survey and found hundreds of patients who complained of serious side effects following the off-label administration of steroid compounds where doctors refused to notify the FDA or the manufacturer through the MedWatch reporting system.

According to a Harvard study, less than 2% of adverse events are reported to the FDA. which means there must be hundreds of thousands of unsuspecting victim that have been injured by the improper use of Depo.

Dr Burton claims there is remarkable amount of ignorance in the medical field regarding ESIs. "Many physicians performing epidural steroid injections on a regular basis," he says, "do not even understand the relationship of this procedure to the possibility of creating adhesive arachnoiditis months later."

This ignorance is inexcusable because studies on the administration of ESIs have been discussed in medical journals for years. In 1999, neuroradiologists from the Center for Diagnostic Imaging in Minneapolis, surveyed 5,334 procedures performed and identified adhesive arachnoiditis as a "well described" potential complication.

The authors of the study stated: "The blind interlaminar technique introduces the potential for erroneous needle placement and subsequent injection of substances into undesired locations, such as the subarachnoid space".

The authors noted that blind needle injection, even by "skilled and experienced procedurists" has been found to be inaccurate in 25-30% of cases, in an article published in the April 1999 issue of the American Journal of Neuroradiol, 20:697-705.

Dr Burton says anestesiologists are the worst offenders when it comes to improper ESIs and statistics verify that claim. The American Association of Anesthesiologists Closed Claims Project / Journal Anesthesiology 2004; 100:98-105, listed ESI complications as accounting for 40% of all AAA malpractice closed-claims between 1970 & 1999.

A section of the Burton reports explains why the majority of lawsuits involve anesthesiologists. Because pain management is big business, anesthesiologists want to be involved in direct patient care, but training in spine care or pain management is typically not a part of their training.

Because reimbursement for administering ESIs is relatively high, Dr Burton says pain management centers have become "procedure mills."

But anesthesiologists are not familiar with adhesive arachnoiditis and the potential for toxicity of steroid suspensions upon entry of the subarachnoid space and mistakenly believe the "blind" needle approach to the space is accurate because they are not trained in the use of x-ray monitoring equipment and so they tend not to use it.

Lastly, an anesthesiologist rarely sees a patient after the procedure to provide them with direct information regarding a patient's progress.

When it comes to ESIs, Dr Burton says many medical professionals seem to be afflicted with the "New Guinea Syndrome," which is identified by the following comparison:

"As remarkable as it seems there are actually primitive tribes in existence today who have not yet connected the act of sexual intercourse with the birth of a child nine months later."

And:

"As remarkable as it seems there are also physicians providing drugs and therapies that have risk to patients who have not yet connected these risks to the serious complications routinely occurring months or years, afterwards."

However by now, the "New Guinea Syndrome" provides no defense for negligent doctors. "Ignorance of consequences," Dr Burton says, "is not an excuse when the medical and scientific community have clearly identified the patient risks."

"The only sensible approach at this point in time," he advises, "is to require medical professionals to fully explain the procedure and other options before it is carried out."

Dennis takes the issue a step further. In September 2004, he told a committee at the Institute of Medicine: "We need to stop the procedure that's causing more harm than good."

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READER COMMENTS

Posted by
Carla Reynolds
on
I have been receiving epidural steroid injections sine 1998 I started at one pain clinic with an anesthesiologist I knew and had worked with and went every three months each year for a few years. Recently I changed and went again to one I knew from the hospital and have been going to him for at least the last five or six years. November of 2013 I began experiencing severe burning in my right buttock, right thigh, and right foot as well as right hip pain and stabbing pain in the right thigh and knee, because of these new problems an MRI was ordered which showed multilevel lumbar disc bulging, right neural foraminal stenosis and lumbosacral nerve root clumping with adherence to the dural sac otherwise known as arachnoiditis. Went for a follow up and the results were never addressed only asked if I had a lot of spinal taps, I said no and all he said was we are going to try something different and yes I received another ESI. I would never recommend these to anybody because the risk is not worth it and no I was never told of this risk! I should have been informed of the off label use and given a choice which I was not! Yes it's hell living with this.

Posted by
Melissa Morgan
on
I agree about a class action suit. I had a myelogram in April which left me without a job and filing for disability. I ended up in a psych hospital with delusions and have arachnoiditis, which may have been the result of two back surgeries. My family doctor dropped me and the neurosurgeon wanted me to have ESIs! I can't find a lawyer who will sue. Isn't that patient neglect?

Posted by
Nancy Abler
on
If ever there existed justification for a massive class action Rico case on behalf of the thousands of unwarned victims of Arachnoiditis , the time is now. This Action would not be a cure for victims of these "unapproved" ESI procedures which inject uninspected toxic and contaminated steroid materials into their spinal systems. In addition, these injections are performed by many unqualified medical practitioners and there is no established protocol for the numbers or timing of these ESIs.

Arachnoiditis is the result of medical barbarism which they have managed to cover up to protect their perceived right to treat patients as they choose, in spite of the warnings and medical publications that expose the horrendous risks.

A class action suit would at least provide some semblance of justice and recognition of what has been done to them. It would finally expose the cause which is overwhelmingly caused by spinal invasive treatments gone wrong,- then immorally dismissed, ignored, ie.- covered up.

Posted by
santa hernandez
on
I'm a 45yrs. old and two years ago I had a lumbar ESI. It wasn't my first one,I had had another one,the year before at the same facility without any problem and no relief. My experience with the ESI was very terrifying. At the time of the procedure when I felt that the doctor had pulled out the needle,I felt a sharp and stabbing pain on my upper back,then,radiating to my chest.I felt a lot of burning on the back of my legs as well as on my back and chest.I was so scare of not knowing what's going on with my body,I was alone at the room and the doctor kept telling me that this thing happen and that it would go away,but I was never told that something like this could happen and I realized that I had suffered some kind of nerve injury because my body was on fire. But it wasn't the worse,I began having too many electrical shocks on my face and head. I felt if I had been shot with a taser gun. My face was twitching in pain due to the shocks. I was very terrified because it was my brain that was out of control. The doctor in order to relax me and discharge me,gave me an injection of morphine. The following weeks were very painful with painful spasms on my thorax and so much pain on my chest and the burning feeling on my back and chest was constant. Three weeks later when I returned to the clinic and asked what has happened to me and who was responsible,I was told by one of the doctors that because I "knew" that all procedures are risky and I had signed a consent form,nobody was responsible. Once again I was reassured that the pain would go away,but it didn't,It got worse with facial pain as well. Two weeks after the ESI I began having a lot of facial and teeth pain,I was told by a dentist that I was grinding my teeth,which I never had that problem and I was sure it was caused by the ESI. All the electrical shocks somehow had to affect my central nervous system.
Two years have passed and I still have the same pain that I had the day of the ESI. My back is always on fire and I feel if I had a stabbed knife on my back radiating to my chest. This is a 24/7 pain and when I walk it gets worse and my facial and teeth pain is also constant despite of wearing a night guard,I'm always in pain. I don't know if I do have Arahnoiditis,a doctor could not be able to see it through the spine MRI that I had shortly after the ESI. I was told that I might need to have another lumbar MRI in order to make a diagnosis. Whatever I have,I'll have it for the rest of my life. That injection not only destroyed my life but my family as well.Unfortunately,doctors don't care. I haven't found any doctor to help me and I'm mostly sent to psychotherapy. I know that it helps,but while I have this terrible pain,nothing would help a lot. I've been told many times that I'll have to learn to live with this pain for the rest of my life and that there's nothing to help me. This is not fair. Once doctors hurt you,nobody cares. IT'S NOT FAIR.

Posted by
shari Taylor
on
I live with arachnoiditis also.My life has gone to hell in a hand basket(funny since it is almost easter.) Anyways I dont know how it happened but the funny thing is now that I know what it is caused by it makes perfect sense one day about two weeks after having my ten year old I woke up and my arms hurt so bad I could not pick himm up and the doctor tolkd me I had carrpul.Which to me was odd and I asked the dr how does that happen over nighjt and he said pregnancy can cause it two weeks later i could not walk to the bathroom.They sent me to a surgeon in missouri.And then the next thing I knew he was doing injection after injection and it made me worse.And many doctors after that too.I dont understand how I go from not hurting to being in a wheelchair dealing with shallow pricks and dr.s who made me worse.If any one wants to talk here is my email sharitaylor27@yahoo.com

Posted by
a
on
this is a serious procedure getting it in the neck or lower back, you know it's serious going into it, we are talking about the spine a simple sneeze can paralyze you, an infection can kill you.

Posted by
mark messing
on
I am a 52 year old man. I have ARACHNOIDITIS Documented.i have lived with this VOLITOL INCUREABLE DEATH WARRENT of a DESEASE for years. After now tolling upwords of 25 surgeries 9 to my low back most including hardware..cage,rods and screws posterior, anterior,my neck a double fusion. Endless hospitals,Doctors and in the hundred of procedures,tests PAIN I HAVE BEEN FIGHTING FOR 16+ years. Yes i live for my PAIN DOCTOR AND FOR YEARS ON MEDICINE ..NOW MORPHINE SEEMS TO BE MY ONLY ALTERNATIVE along with an aray of other medications for verious reasons due to this LIVING HEL- i have been Plagued with. My life is a hopeless nightmare of THE MOST PAINFUL EXISTENCE ONE can possiblely imagine ..sleepless nights.days on end of no sight of a future of anything but horror ,terror shattered my families dreams as my love of 33 years 5 wonderful children. We are ..i am here on this plant to tell you about "LIFE WITH ARACHNOIDITIS"an electric wheelchair most of the time. IF I CAN BE A HELP IN ANY FORM INGCLUDING A GUINEA PIG TO ANY RESEARCH FOR THE CLUES that may lead to Helping A Doctor interested in a goal of finding out more and a PRAYER FOR A HOPEFUL SOLUTION to this man created informed im sure but, money ,more important then my life my FAMILY ,FAMILIES OF THOUSANDS OUT THERE WHO SUFFER THE WAY I/WE DO..mark

Posted by
diona b. ragar
on
In 2007, I received my first ESI in my cervical spine for pain encompassing left side head,neck,shoulder,arm and back. this seem to only increase my pain. after continously telling doctors that the pain initially started with left shoulder from a hurricane accident and something was wrong with my shoulder. they again insisted that pain probably was coming from neck since I had been in car accident many years earlier. they again said we can't help you unless you get epidurals. So they set me up for two more. I need to mention that after each of these; the pain not only worsened, but I woud get bladder and kidney infections, eye infections etc. After what I believe and was told was an unnecessary neck fusion; I convinced them to do another shoulder arthogram which showed the fluid pouring from my joint. I underwent extensive shoulder surgery.pain worsened.I was given 3 more ESI"s. I now have Addisons and chronic pain!!!!!!!!!!!!!!!

Posted by
Zahava Gold
on
The motivation for ESI is MONEY and never forget this. The neurologist who talked me into an ESI admitted he does these all day, hundreds per week. Doing the math, he is a millionaire from performing ESI. He never told me about risks, only inflated non-existent benefits. I was ignorant at the time and submitted to the procedure. I also believe a spinal pain block during childbirth initiated the descent of my spine into heinous chronic pain.

Luckily I submitted to one ESI only and realized it made me worse. The suspension contains a toxin similar to antifreeze , that is used to preserve the Depo Medrol. May these doctors rot in hell for what they do for money.

I looked into suing him but met with lawyers who actually seemed to be protecting this quack by telling me I had no case.

Since then I have adamantly warned anyone contemplating an ESI to demur! Remember, you only have two years from date of injury to sue a doctor who does this to you. Unfortunately I was not in my home state at the time or I would have been able to find someone to sue this bastard.

Posted by
julie
on
i have arachnoiditis caused by a spinal block given during child birth. i'd like to touch base with dawn who posted the same this year. email me at juliefoster9491@comcast.net. i'm looking for support from someone in a similar situation :(

Posted by
Hobbler55
on
After back surgery in 1976 I went back to the doctor with a painful golf ball sized knot on my back at the injection site where I was given Depo Medrol for a myelogram before back surgery. Since it was a workmans comp case (I guess) the doctor didn't want to mess with me. He told me a little CSF had most likely leaked out of my spinal cord at the puncture site, but it should go away in a month or two. I was 23 years old then, I'm 59 now.

It took going from doctor to doctor, after doctor, for ten years starting in 1980 begging at times to be cut on before a neurosurgeon finally diagnosed me with archnoiditis and fibromyalgia in 1991.

It wasn't until the advent of the MRI machine that my arachnoidits was finally acutally SEEN by a doctor. He used a contrast agent also but I've forgotten the name {starts with Gad or Gal I think}. He had me scheduled for another laminectomy the next day for a ruptured disc but canceled the surgery after talking with his radiologist. He told me in 1991 the best thing I could do would be to go home and go to bed. He said cutting me open would only make the pain worse in his opinion.

I had pretty much been in bed since 1981 when I had to quit my job. Lost wages for me total nearly one million dollars. My wife worked at a bank at the time for $500 per month and that was our only income for 2 years. When I got my first SSDI check for $399 it was like a million dollars to us but somehow it didn't equate to the monies I've lost in wages over the years. Don't get me wrong though, I'm GREATFUL for my disability check.

Here's some advice for free... Don't let ANYONE stick a needle in your spinal cord unless you've been in a car wreck or sustained another type of injury and can't walk due to a broken back!

Yes Virginia, there actually is a hell on earth.

Posted by
Dawn
on
I was given arachnoiditis from an epidural for childbirth. Then worsened by 3 steroid injections for the pain I had from THAT and worsened considerably. I have a Facebook support group. Anyone can find us and join by searching for Arachnoiditis Everyday. There are 30 or so of us in there. It's for those of us struggling with the disease, and those of us struggling for diagnosis.

Posted by
Claudia Laurence
on
I was (finally) diagnosed with arachnoiditis in 2008 after years and years of horrendously painful symptoms. Until an orthopedic surgeon finally ordered the MRI through which the arachnoiditis was identified, I was treated as a drug addict and faced doctor after doctor who rolled their eyes and acted as if I was faking for medications.
I was referred to a 'highly regarded' spine surgeon, Dan Cohen, in Miami Beach, who pointed out the arachnoiditis on the MRI film and then went on to administer an epidural for pain relief. I was not yet versed well in the causes of arachnoiditis, but I questioned the epidural and was given the "which one of us has the M.D." speech as a response. Of course, that epidural only escalated the level of the disease and caused even further suffering.
In the years since my diagnosis, I have learned that the medical profession is sadly lacking in information about arachnoiditis--either because they don't care, don't choose to learn or understand, or feel they must cover up for all the physicians who continue to give epidurals for 'pain relief' for everything from labor pains to ruptured disks.
The only help available for arachnoiditis sufferers is through pain doctors who understand that 1-2 percocet every 6-8 hours is not going to touch the intractable pain of this hideous disease. Of course, then we must take the attitude from pharmacists who either want to be or think they are doctors who know better what we should be taking for pain. In the alternative, we can go to clinics that offer unconventional, experimental treatments (chelation therapy) that 'may or may not' help. Meanwhile, as each day passes, I grow more and more crippled with less and less sense of hope...

Posted by
Alison Boosinger
on
I was given 13 ESI's over a period of 3 years time for relief of low back pain. Not once was I told of it's off label use, nor the possibility of getting adhesive arachnoiditis, from which I now suffer. I was a full time nurse, serving as a medical missionary in Guyana, South America. This was cut short after my arachnoiditis progressed to the point where all I could do was lay down, 24/7. I now have an intrathecal morphine pump and live on oral morphine as well. The use of Depo Medrol and blood patches should be permanently banned by all Doctors!!! Just think of the life I could still be living if it weren't for this hideous disease, it just is not fair!!

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