Monday, December 31, 2007

What is your Doctor really writing in your health record?

I often wonder how many Chronic Pain Patients lives have been destroyed because of a doctor putting, not what you are telling him, but what he perceives that you are saying, in your medical records. As a person who has lived in Chronic pain for 25 years, the last 5 years being absolute torture and has been down this road many times, I can tell you, it happens every day. It has happened to me and if you are living in Chronic Pain, I can just about promise you that it has happened to you. Do you have a copy of your medical records now. If not and especially if you have been to several different doctors seeking treatment as most of us have, I would strongly advise you to obtain and keep as many of your records as possible. You might want to prepare yourself to be shocked!!, as to what you may find in them.

While a doctor's office should be a haven for the sick, that is no longer the case, especially for the person suffering from Chronic Pain. They still take your money, as they always have, and they will prescribe you anti-inflamatory, antidepressants, etc, but the minute you mention something stronger, for example, some type of opioid, you have just entered into an aggressive, non trusting relationship with your doctor. All of a sudden, you have become a drug addict, just looking for drugs. Never mind that you are in so much pain that you don't feel that you can go on any longer. Opioid phobia has just kicked in with your doctor and you have committed the unpardonable sin of asking for the only thing that will control your pain, especially if it is at the levels of mine.

Its not enough that people like you and me have to go through this demeaning process with the medical profession trying to find someone with the compassion and education to help us, we usually end up with junk and outright lies placed in our medical records that will haunt us the rest of our lives. Maybe that is one of the reasons that approximately 17,000 people suffering from Chronic Pain kill themselves every year.

Even though this happens everyday all over America, and even though it is a violation of Federal laws, State laws, its unconstitutional and certainly a violation of "human rights" it keeps happening. Why? Because in 1999 some accountant in the GAO reported that opioids especially
Oxycontin was being prescribed to much. Now what in the hell some accountant knows about what is to much to prescribe a person in Chronic Pain, I will never understand , but the committees and sub-committees in congress started holding hearings and hence President Bush and John Ashcroft started the "War on Drugs" with the help of the DEA.

Of course the doctors are now afraid to prescribe any type opioid for fear of the DEA. So what is going to happen to people like you and me? Nothing until we all get together and start demanding our rights. So do you want to be part of the solution or spend the rest of your life in pain. Personally, I hate doing this blog, because its talking about a subject that is my life, and I sit up late at night to write it and I am in pain. I spend a big portition of my life writing congress, working with advocacy groups and writing this blog. You may not be in pain now, but all it takes is an auto accident, a fall and you will find yourself in my world. So step up. We need you!!

Sunday, December 16, 2007

Are you "Chemically dependent or "Addicted"?

Two of the most misunderstood terms in taking opiate or opiate-like drugs is Addiction vs. Chemical Dependency. Doctors, especially the News Media and even Chronic Pain patients themselves often misuse the terms. As a Chronic pain patient you have a duty to educate yourself on these things. Its not fair to you and it is certainly not fair to other Chronic Pain patients who are "fighting for our rights." So educate yourself!!

In writing this blog I want to be fair and present the other side. I just wish the "News Media" would do the same. If you take powerful Opiates or Opiods because you live with a level of Chronic Pain that is intolerable, sooner or later you will become chemically dependent on them. This is normal and if at some point you feel you no longer need them, slowely start reducing your dosage until you are completely off of the drug. I would suggest consulting with your Doctor and make sure he is aware of what you are doing. He will probably advise you at what rate you should reduce the medication. If you continue to take them after you no longer need to and make no effort to get off of the pain medications then you have become Addicted. At that point it is time to seek out an Addiction medicine specialist.

When opiates are prescribed by a physician for the treatment of pain and are taken in the prescribed dosage, they are safe and there is little chance of addiction. However, when opiates are abused and taken in excessive doses, addiction can result.

The brain itself produces endorphins that have an important role in the relief or modulation of pain. Sometimes, though, particularly when pain is severe, the brain does not produce enough endorphins to provide pain relief. Fortunately, opiates, such as morphine are very powerful pain relieving medications. When used properly under the care of a physician, opiates can relieve severe pain without causing addiction.

Feelings of pain are produced when specialized nerves are activated by trauma to some part of the body, either through injury or illness. These specialized nerves, which are located throughout the body, carry the pain message to the spinal cord. After reaching the spinal cord, the message is relayed to other neurons, some of which carry it to the brain. Opiates help to relieve pain by acting in both the spinal cord and brain. At the level of the spinal cord, opiates interfere with the transmission of the pain messages between neurons and therefore prevent them from reaching the brain. This blockade of pain messages protects a person from experiencing too much pain. This is known as analgesia.

Opiates also act in the brain to help relieve pain, but the way in which they accomplish this is different than in the spinal cord.

There are several areas in the brain that are involved in interpreting pain messages and in subjective responses to pain. These brain regions are what allow a person to know he or she is experiencing pain and that it is unpleasant. Opiates also act in these brain regions, but they don't block the pain messages themselves. Rather, they change the subjective experience of the pain. This is why a person receiving morphine for pain may say that they still feel the pain but that it doesn't bother them anymore.

Although endorphins are not always adequate to relieve pain, they are very important for survival. If an animal or person is injured and needs to escape a harmful situation, it would be difficult to do so while experiencing severe pain. However, endorphins that are released immediately following an injury can provide enough pain relief to allow escape from a harmful situation. Later, when it is safe, the endorphin levels decrease and intense pain may be felt. This also is important for survival. If the endorphins continued to blunt the pain, it would be easy to ignore an injury and then not seek medical care.

There are several types of opiate receptors, including the delta, mu, and kappa receptors. Each of these three receptors is involved in controlling different brain functions. For example, opiates and endorphins are able to block pain signals by binding to the mu receptor site. The powerful new technology of cloning has enabled scientists to copy the genes that make each of these receptors. This in turn is allowing researchers to conduct laboratory studies to better understand how opiates act in the brain and, more specifically, how opiates interact with each opiate receptor to produce their effects. I just hope it is soon, because personally I hate taking opiods or any medication for that matter. I, like most people in chronic pain just want a life.

Monday, December 3, 2007

Spine surgery and all of the new "devices"

Every MONTH it seems like another new DEVICE OR PROCEDURE for Spine Surgery is approved. There are new and less invasive ways to fuse different levels of the spine, especially the lumbar and cervical discs. There are new tools, devices and procedures. The only problem is after all the surgery and the pain of fusions most patients are no better off and in most cases worse than before. How do I know? I have been there done that, I have researched it for 20 years and I receive comments and e-mails of people just like me, a living mass of pain.

Since I believe that man was created by a higher power, if he had meant for the spine to be rigid, he would have made it that way.

Now enter the Charite' artificial disc which was first developed in Berlin, Germany almost 20 years ago with dismal results. Depuy Industries owned by Johnson and Johnson purchased the company that owned the disc and of course got it pushed through the FDA with a short clinical trial, spine surgeons started implanting the device in the USA, in the L4-L5 area of back patients.
"Seven months later, on May 13, 2005, the, reported that Dr Charles Rosen, an associate clinical professor of spine surgery at the University of California at Irvine, was calling for an immediate recall of the Charite, pointing out fundamental flaws in J&J's study design.

He told the Street that J&J compared the Charite to BAK cages in spinal fusions, a failed procedure that had not been performed in years. According to Dr Rosen, the comparison is "the worst possible operation to compare these things to."

J&J responded by saying the BAK was the standard treatment for degenerative disc disease at the time of the study.

According to the Street, Dr Rosen said J&J ignored the first patients who underwent the surgery, and that exclusion of such a significant portion of the sample size can seriously compromise the quality of statistical data.

Dr Rosen, who is also the founder of the UCI Spine Center, told the Orange County Register on April 12, 2006, that the Charite can cause more pain than it cures.

Forty-five year old, Dane Titsworth, from a hospital bed at UCI Medical Center, recovering from his fourth back surgery, told the Register, that the pain he experienced with the Charite he had implanted in May 2005, was like driving a big rig over your legs.

After the Charite surgery, Mr Titsworth said the pain became unbearable and cost him his job with State Farm Insurance, and nearly his marriage.

Dr Rosen fused the part of his spine where another surgeon had implanted the disc.

The Charite does not absorb shock like a healthy disc or mimic natural motion, Dr Rosen told USA Today on July 25, 2006, and a dislocation or fracture of the disc can also cause problems, he said.

In March 2006, Dr Rosen says, eight more patients like Mr Titsworth contacted him, who have more pain in their back with the Charite than without it.

In May 2006, Medicare decided to stop paying for the device in patients over 60, noting that the $30,000 to $50,000 surgery had not been sufficiently tested for long-term affects.

Blue Cross and Blue Shield also determined that more research was needed over a longer period of time, although insurance plans in each state determine coverage decisions individually, according to USA Today.

On October 20, 2005, the Bagolie Friedman law firm announced the formation of the "International Charite Artificial Disc Practice Group," based on a belief that numerous people in the US and abroad, "suffer Charite artificial disc failure," and that "Johnson and Johnson is responsible for manufacturing a medical device they knew or should have known was unreasonably dangerous in an attempt to capture some of the lucrative multi billion dollar back surgery market."

"We will be reviewing potential cases from the United States, Australia and Europe," said Mr Bagolie.

On June 5, 2006, the reported that Chicago-based attorney, Pete Flowers, has more than 200 clients who have complications from the Charite and who are seeking reparations from DePuy Spine.

Twenty-eight lawsuits have been filed, Mr Flowers told the Street, and he expects an additional 40 to 50 more to be filed this month. Dane Titsworth is a client of the firm.

Mr Flowers' clients claim the Charite is defective and that J&J improperly marketed the device and did not adequately warn of the disc's dangers.

"Most of these people are between 25 and 45 years old," he told the "A lot of them have lost their jobs, their spouses, their families, their houses -- everything."

Since the disc was approved in the US, more than 5,000 people have received the implant, says DePuy Spine's Bill Christianson, vice president of regulatory affairs, according to USA Today on July 25, 2006."

Lawsuits Multiply

Sunday, November 18, 2007

Veterinarians receive 3 times more training on pain than doctors and nurses

This is a Canadian survey, but I believe it and it is probably worse in the USA. I also recently learned from a reliable survey that "old people" are the most undertreated for pain, followed by "children", then "women". "Men in the 30 to 45 year old range get the best pain treatment".

"Toronto - A recent survey for the Canadian Pain Society found students in veterinary medicine received an average of 98 hours on pain education, while medical students spent about 16 hours studying the subject.

Among the vets in training polled in the University of Toronto survey, the least amount of specific pain education received was 27 hours, whereas some medical and nursing students admitted they'd received no training on pain at all.

Nursing students spent an average of 31 hours on the subject of pain.

"All the veterinary colleges had way more hours than medicine, nursing, dentistry (and) pharmacy," said lead researcher of the study, Judy Watt-Watson.

She told 680News a stubborn stigma around chronic pain is playing a role. "There are chronic diseases related to pain that we can't take an X-ray of," she said.

One in four Canadians have suffered from chronic pain, according to researchers, who suggest training on the subject should be mandatory, not elective, in more medical schools across the country.

The society said this lack of training is leaving Canadian health care professions inadequately equipped to treat pain-related problems".

Source:Taiwo Lewis
.680 News

I receive a lot of e-mail from people all over the world, especially Canada, New Zealand, UK, and of course here in the USA and it really doesn't matter where, its the same horror stories and the same stigma no matter what the country. It is also a damn disgrace.

I will leave my first bit of education for the medical profession. Here is the stigma. "I am afraid you will become addicted". That statement in itself is wrong. You don't become addicted. Addiction is a behavioral problem, part of it even hereditary, where by people get medication for the high, the euphoric feeling and most have no chronic pain problems.

Chemical dependency is the correct word and is a natural occurrence when people have to take powerful medication for a pro-longed period of time. All you do is start slowly reducing the amount of medication you are taking until you are off of it. As a matter of fact "addiction" and "chemical dependency" take place in two totally different areas of the brain.

How do I know? Because I have gotten off of powerful opiods myself, seven or eight times. If I felt like I needed help getting off of them, I would tell my Doctor and ask him to help me. Why, because like the majority of people in chronic pain, I am not a damn drug addict.

Friday, November 9, 2007

How can you write a blog about Chronic Pain when you are in so much pain?

I was recently asked this question by my Psychiatrist. "How can you write about chronic pain when you are in so much pain yourself". Honestly, it is getting harder to keep this blog updated. In the beginning it was my hope of getting the attention of the medical profession and the politicians. The most rewarding thing is to get comments and I also receive a lot of e-mail from people in pain. I am an advocate for chronic pain through such wonderful organizations as The American Pain Foundation. Chronic pain is one of the most stigmatized diseases in the world, just like Mental Illness used to be and still is to a degree, but not as bad as in the past.

It is only in the past decade that mental illness and psychiatrists have been getting the credit they deserve. In the past people suffering from any form of mental illness were characterized as "being crazy", "retarded", "messed up in the head, sickos". In 2006 an independent study showed that 11% of women and 5% of men take antidepressants. This situation is far from perfect but thanks to scientists and research, we are finally starting to understand the complexities of the human brain and the central nervous system.

Depression and anxiety problems or panic attacks which is a form of mental illness is a problem that Chronic Pain sufferers have to deal with also, especially if you have lived with chronic pain like me, for years. The Psychiatrist I mentioned above, I believe "with all my heart", was placed in my life by GOD. I have been seeing him for 16 years. I have been in Chronic Pain for 25 years. He has treated me for depression and panic attacks for 16 years. He has watched me go from a person with constant pain levels of 3-4 to constant 10 pain levels. He has also watched me battle with back surgeries that only made the pain worse. He has watched me battle the so-called pain management specialists who only want to do their spinal injections at $2500.00 per shot then send you back to your primary care Dr. for pain medication.

Out of anger at what I have been through and compassion for the way I was having to live he made this statement to me. He said, I really have no desire to get into pain management, but I am going to start treating you for your pain. He knows that the medication he prescribes is not sufficient for my pain level but it helps. That was 5 years ago and he still prescribes all of my medication. Not only is he a good psychiatrist but he is a very knowledgeable Medical Doctor. I have nothing but gratification for him and in my life he is one of about three in the medical profession I can say that about.

Chronic Pain is a disease and finally research is starting to reveal the complexities of it. It will not be in my life time that the "he is only wanting drugs because he is an addict" stigma will be lifted. In the meantime myself and about 60-70 million others will continue to "suffer in silence".

Tuesday, October 23, 2007

It makes sense to me.

I had the good fortune to find a Neurosurgeon who has more certifications and belongs to more medical organizations than anyone I have come across. I just wish more surgeons would read his material and take some of the advice that Dr. Burton offers. He is certainly qualified to give it.

The following is from Dr. Charles V Burtons Burton Report

"It is remarkable, but true, that most people seem to spend a great deal more time in selecting downloads for their iPods than in selecting a spine surgeon. This is unfortunate because it is an important decision which often dictates a patient’s long-term quality of life.

Medicine is a profession, as many others, where prevailing therapeutic approaches may be, in fact outdated. There was a time, not too long ago when diseased hips, knees and ankles were routinely fused. Then the era of artificial joints changed this previously universal approach.

Spine surgery is still being held hostage to the "fusion" mind set. The spine is inherently flexible and forcing it to become rigid over many segments is the cause of significant stress related continuing problems. The result of this continues to be the inordinate production of "failed back surgery syndrome" patients.

It should seem readily evident that the architects who design skyscrapers include some flexibility in case of external stress such as hurricanes or earthquakes. If they do not do so these structures collapse. The same is true of the human lumbar spine and this is an important part of restorative spine surgery.

The need to reduce spine surgery failure has led to the advent of more physiologic, motion preserving, spine technologies of which artificial discs have probably received more than their fair share of M2H attention. It continues to be a sad, but true, story that some of the very best treatments often are associated with less commercial profit expectations and thus become medical "orphans" ignorant of William of Occams' Razor. Flexible stabilization systems and artificial disc nuclei exist today as well as restorative neuroradiology where polymers are injected.

It is essential for patients to become aware of all valuable options and search out those associated with less risk and higher efficacy. In spine surgery motion-preserving reconstructive (restorative) spine surgery represents one such important choice."

The information in quotes is the copyrighted material of Dr. Charles V. Burton and used with his permission. If you want to get a lot of information on the human spine and surgery, I suggest you visit his site below.

Wednesday, October 10, 2007

Undertreatment of Pain: A National Disgrace

These are the words of Professor Ronald T Libby, in a commentary on pain that appeared in "The Pain Community" a monthly news letter published by The American Pain foundation this month, and he is exactly right.He reaffirmed what I have been saying, that most experts agree that right now there are approximately 76 million people struggling with Chronic Pain. Even though I have focused on the spine mostly, there are a host of other diseases and injuries like cancer, diabetes, rheumatoid arthritis, fibromyalgia, migraines, Hiv/Aids and other trauma from injuries. Even our veterans returning with all types of traumatic injuries are faced with not getting treatment for their injuries and that is a damn shame and a disgrace. If patriotic soldiers who have sacrificed themselves for the defense of their country do not receive adequate pain treatment for combat related injuries, what chance does the rest of the population have of getting pain relieving treatment. The reason for the failure to provide life giving pain relief to patients is the pervasive fear of prescribing opioids, narcotics. The societal enforcer of opioid-phobia is the DEA,(Drug enforcement agency). I really don't blame them entirely and this is why. Much of the problem lies with the powerful committees and sub-committees in Washington, D.C., playing to the cameras for their own selfish gain. Have you ever watched a cabinet member or a department head testifying before them on C-Span. The want more results on the drug trafficking trade so they go after the Doctors who are trying to help people like me and millions of others. Hey you political bastards, we are not Drug addicts. We are people suffering to the point of taking our own lives just to get away from the pain. This medication was approved by the FDA for the purpose of helping people like myself and Richard Paey live.

The biggest problem of all is the disinformation or misinformation by the damn News Media. They will talk about some pro-athelete overdosing on steriods for a month, or some celebrity getting picked up on a drug charge, but they will not devote one minute of time to some of the Chronic Pain Advocacy groups appearing on T.V. to tell the truth about the Chronic Pain undertreatment disgrace going on in this country at this very moment and it affects millions.

Friday, September 28, 2007

Some good news for a change!!

Tonight I get to write about something good in my pain filled world for a change. Richard Paey who was a 47 year old Ivy-league lawyer with a wife, children and a good future was injured in an automobile accident a few years ago. He ended up with spinal cord injuries and from what I have read about him, he ended up with a botched surgery to make things even worse. After that a life much like my own, of agonizing pain.

Long story short, he was charged with possession of narcotics in Florida my home state by an overzealous prosecutor and sentenced to 25 years in prison, even though the man was in a wheel chair and in unbearable Chronic Pain. Many organizations including one that I am a member of The American Pain Foundation appealed to then Governor Jeb Bush to grant the man clemency which he refused.

Well GOOD NEWS!! Thanks to Governor Charlie Crist, Richard is out of prison wheel chair and all. The irony of it all is he was getting better treatment in prison,(implanted morphine pump) than before he went in. The picture I am using above is actually one of his cartoons he drew while in prison. Thank You, Governor Crist, for your compassion, and Good Luck to Richard. I hope you get the treatment you need.

The following is an update by The American Pain Foundation. who worked so hard to get him released.
Richard Paey Granted Full-Pardon and Clemency

Richard Paey, the 48 year-old pain patient who was sentenced to 25 years in jail in Florida for "drug trafficking," was granted a full-pardon and clemency Thursday, September 20, by Florida Governor Charlie Crist and his Cabinet. The Governor's pardon and clemency order illustrates the kind of understanding and compassion that needs to be much more present in our medical system and in the ranks of law enforcement, regulatory, and prosecution systems.

The American Pain Foundation applauds Governor Crist’s sensible and compassionate act in righting a situation that should have never gotten so out of control. The American Pain Foundation also commends the tireless work of the Paey family in motivating and galvanizing the pain advocacy community to take a stand against the unfair treatment of people in pain. The emotional and financial toll inflicted on the Paey family by Florida law enforcement is simply unacceptable.

Richard's prosecution symbolizes the moral decay of our law enforcement and prosecutorial system that chose to see a person in severe chronic pain as a criminal and drug dealer rather than an individual in severe medical crisis seeking a solution for his pain. Law enforcement and prosecutors are not medical experts and should not be permitted to perpetuate a state of fear among people with legitimate pain needs and the medical community that serves them. Richard’s case is a shining example of what can happen when law enforcement and drug abusers dictate medical policy.

Treating desperate pain patients and doctors who treat them like common drug dealers is insane. There should never, ever, be another case like Richard Paey. The American Pain Foundation is committed to supporting the rights of people in pain through education and advocacy. Efforts to prevent the diversion and abuse of pain medication must be balanced so they do not interfere with appropriate and effective care for people with pain.


Friday, September 14, 2007

It would be nice to hear the TRUTH!!!

I walked out of a spine surgeon's office about nine months ago not believing what he had just told me. I had pretty much made up my mind to have another surgery, this time a fusion of L4-L5 and L5-S1 discs. As I started to leave I ask him if he was sure that this would help me. He replied and I quote "Sure, you will feel so good that you will come back for another one". I couldn't believe what he had just said.
I looked at him and replied "in your dreams". This doctor is supposed to be one of the best minimal invasive surgeons in the country but I have done to many years of research on spine surgery to believe a statement like that. It seemed totally out of character for a professional and I never went back to him.

What ever happened to True Informed Consent. I will tell you where it is, it has fallen by the wayside by many Spine Surgeons. To be fair and thanks to the internet not all surgeons are this way. There are many good and ethical surgeons that are up-in-arms about things such as this. That is why a group of surgeons have started theAssociation for Ethics in Spine Surgery.

"In a study published in WebMD done by a group of Surgeons at Switzerland's University of Lausanne Medical Centre, Dr. Bertrand Graz and his colleagues state that "Doctors overly Optimistic about back surgery". In their study a total of 197 patients were included for back surgery. Prior to operating, their surgeons were asked to predict how much surgery would improve their patients quality of life. The surgeons predicted that 79% of patients would have "a great deal of improvement" and 20% would have "moderate improvement". A year later when questioned, 56% of the patients reported no significant improvement in their
health. The article went on to say that this was not the first study that surgery is not the cure-all for low back pain that many patients think it is, or the first to suggest that surgeons do a poor job of predicting which patients will benefit the most from back surgery."

My own personal feelings after having three surgeries, I don't think there are any cures for spinal problems at the present time. Maybe someday there will be. In the mean time the pain goes on.

Friday, September 7, 2007

A very bad Day!!

I am sure that most people who live with the levels of Chronic Pain that I do will tell you that one of the worst things about it is the Loneliness. It eats you alive because all of a sudden people don't have time for you and Yes "THAT INCLUDES YOUR OWN FAMILY". Even writing about pain when I am in so much pain at times is almost unbearable

Most of the time I do a pretty good job of keeping things in perspective but today wasn't one of them. My ex-wife, the mother of my two sons is dying of lung Cancer. My youngest son has always run from reality when it comes to things like that. He called me last night to tell me that she was back in the hospital and then got upset with me because he said he didn't like the way I reacted. When I asked him to explain what he meant he couldn't.

I had called him two or three times previous this week and of course I got the same answer that I have gotten for years. Dad, I am busy right now. I will call you right back. He didn't of course but I have grown use to it because he never does. Neither of my children call me any more to ask me how I am doing, if they can do anything for me, however they will call if they need something from me. Strange? Not really.

People can relate to cancer, heart problems, strokes, lung problems and I could go on. Just the word Pain, or Chronic Pain just doesn't seem to register in the human mind as being anything serious. Hell, what can you expect when most of the medical profession feels the same.

Sometimes I want to just stop writing even stop trying to even think about it. It is hard to believe with so many millions of people in this country in pain that it continues to be ignored especially by the state and federal law makers. I thought in this country you were presumed innocent until proven guilty, yet the majority of people that have had surgery after after surgery and still live in unbearable pain are stigmatized as just drug addicts. This is absolutely pathetic. Even many of the fighting men and women who have sustained severe damage are running into the same problems. This my friends is a disgraceful shame.

Saturday, August 25, 2007

Why do I even bother writing a blog about pain?

Photo of me 8 months before my injury. The real damage was done by the surgical procedure that followed.
I have asked myself that question a lot lately. After all, no one wants to read about pain. Most people have the perception that bad things only happen to other people. Actually I guess I felt that way myself at one time. Its just human nature to not want to talk about painful or unpleasant things. Like so many other people who live in Chronic Pain, I ask myself more and more every day, Why even GO ON. Why not just put a stop to all of the pain, the sleepless nights.

Even taking pain medication gets very old and I will never be able to understand why anyone would want to take strong opiates that don't need them, because they all have side effects. Personally I think that people who take opioids just for the feeling are unhappy with themselves, with life. The news media makes it harder for people like me to get help because of their biased reporting. I'm not that way, I get high off life, and this beautiful country that GOD has blessed me with. That is one of the reasons that I cannot bring myself to take my own life. I am a man of God and I don't believe that is my call to make.

Someone once ask Rev. Billy Graham if there was a God, why did he allow little children to suffer and die young? Actually it was on the "Larry King Live Show". Rev. Graham looked at Larry King and replied I DON'T KNOW. He went on to say, "If we knew all of the mysteries of God then there would be no reason to worship him. He is absolutely right.

Do I believe there is a God? With every fiber in my body. Why hasn't he healed me? I don't know because I have prayed for him to do that. The best thing I have going for me is when I walk outside about 4:00 A.M. in the morning, which is about the time I go to sleep and look up at the beautiful universe I know his "Holy Spirit" is with me. That and my family is what has kept me going, along with the hope that if I write long enough, the medical profession and the politicians will do something to help me and the 60 million people in this country of all age groups who suffer as I do. It is time for both of them to put an end to the unfair stigmatization of Chronic Pain sufferers being drug addicts. It is a lie and I challenge any of them to show proof of it. They want do that for one reason. THEY CAN'T.

Thursday, August 9, 2007

But it is FDA approved!!

SO WHAT!! Who do you think sits on the advisory boards that approve drugs, artificial discs, or any of the other new appliances and gadgets that are approved. A five person panel of Physicians usually associated with the field that the new product will be used in. The politics and lobbying there is just as great as it is anywhere else in Washington, D.C. Am I saying that everything that the FDA passes is bad. Certainly Not! I am saying that more and more The FDA is influenced by politics and lobbying of big drug and device companies.

The Charite disc is one very recent example. This disc was designed at Charite, hospital in Berlin, Germany almost 20 years ago and the results have been dismal at best. I have personally followed it for 15 years myself. It was purchased by a company owned by Johnson and Johnson and over the objections of several high profile "Ethical Spine Surgeons", it made it through the FDA pretty fast and is now being implanted in to the Lumbar Discs of people like me.

Dr. Charles Rosen and several other great Spine surgeons have started a new Association, Association For Ethics in Spine Surgery. Dr Rosen is one of The Surgeons who has called for the FDA to remove The Charite disc from the market. You can read about his remarks at Whats Wrong with The Charite Disc

There are many great professional surgeons in this country who practice by the oath they took, on the other hand "THERE ARE MANY SURGEONS WHO ARE GREEDY AND DO NOT HAVE THE PATIENTS HEALTH FIRST, WHICH IS WHERE IT SHOULD BE". When I had this new FDA approved procedure that I have talked so much about the Chemopapain injection, the Doctor that performed the procedure on me never mentioned the down side or the possible things that could happen. All he talked about was what a great medical break through it was and how much better I was going to feel. I WISH!!

For a look at one of the Nations Top Surgeons who has been there and done that, read what Dr. Charles V. Burtons views are on this Subject and I will take you to his site so you can read his article complete.

----------------------------------- Dr. Charles V. Burton ------------------------

"During the 1970's the Editor was a representative of organized neurosurgery in the drug and device areas. This involved the writing of standards and it wasn't unusual for standards groups to create rules which "were smarter than they were". Being in Washington at the genesis of medical device legislation the editor experienced firsthand the sport of "character assassination" so well described by Vincent Foster prior to his suicide. In providing testimony to the Congress of the United States government the editor observed a prominent consumer advocate providing false testimony. When this was later brought to his attention in private he acknowledged that he had lied but retorted: "but I made the point didn't I?". This also was quite an eye opener regarding the true nature of the "playing field".

Other "eye openers" have been the government's political agendas. The editor, as a Food and Drug Administration medical device panel chairman observed the process by which knowledgeable consultants were removed from serving on FDA panels because of potential or real conflicts of interest. Rather than protect the public interest by the application of "sunshine" principles, these experts were replaced by politically "correct" minorities for the purpose of "balance". Unfortunately, these choices reflected an expediency dictated by the wrong motives and thus deprived the public of important guidance in the areas under consideration. Effective means of keeping experts as consultants while at the same time negating their potential conflicts of interest were not utilized.

As a member and chairman of local and national ethics committees the Editor became aware that it was not a popular deed to bring up discussions as to what was in the patient's best interest rather than those of the physician or hospital. Minnesota physicians are well-known for placing their patients best interests at the forefront in the physician-patient relationship. The Burton Experience has been that this ethic deteriorates rapidly as the issues go beyond those of immediate patient needs.

Few medical professionals have evidenced to the Editor an awareness of what ethics are or the reasons as to why they are important in health care. Those who have appeared to understand ethics frequently suffer from memory lapses when confronted by self-interest. Medical ethics has been, and continues to be, an afterthought in the medical community. It needs to be reinvented."
The Burton Experience
This is copyrighted material and reprinted with the permission of Dr Charles V. Burton.

Monday, July 30, 2007

What most Americans don't know about medicine.

When was the last time you as a spine patient ever talked to your Surgeon about surgery and he mentioned things like the dangers of contrast materials, or the danger of chemicals in steriod injections, of the dangers of injecting ANYTHING close to your spinal cord. When has one ever mentioned the word Adhesive Arachnodities. They haven't because they don't talk about it. As I mentioned earlier, my own primary care physician had never heard of the chymopapain injection, a procedure used from its approval in 1983 until about 1990. This kind of thing falls under INFORMED CONSENT. What kind of informed consent do you get before surgery? I will tell you because I know. You get that yellow form shoved in front of you to sign just before you go into surgery. ITS YOUR BODY AND YOU ARE THE ONE THAT HAS TO LIVE WITH THE CONSECQUENCES. You also have a right to know. Below is an excerpt taken from Dr. Charles V. Burtons, Burton Reports. Read it then, I will take you to his site where you can see word for word what I am talking about.

"Despite society's frequently professed concern with the sanctity of, and need for. the preservation of human life this attitude is not always evident when reality sets in. The melamine poisoning of pets by tainted foodstuffs has created a remarkable whirlwind of world attention which has resulted in a swiftly successful scientific investigatory response to find the culprits and make sure that this does not happen again.
Unfortunately, poisoned humans have not been as lucky as their pets. The press has also recently brought to our attention the fact that a syrupy poison (diethylene glycol, the prime ingredient in antifreeze) has been substituted for more expensive and safe ingredient glycerol in oral medicines, such as cough syrup throughout the world for over a decade.

The effect of the oral administration of diethylene glycol produces kidney failure, paralysis, and in most cases death (please note the similarity of symptoms with pet deaths due to melamine). Massive diethylene glycol poisonings have now been documented in Haiti, Bangladesh, Argentina, Nigeria, India, Panama, and China.

In underdeveloped countries most people who die don't come to a medical facility or have toxicological autopsy studies. While some may be tempted to take some solace in being in a more advanced society, they shouldn't. Please put on your seatbelts at this point in time.

You will no doubt be surprised to learn that the same poison, diethylene glycol, has been injected into the spine of unsuspecting Americans and their European cousins since the 1940s as a ingredient of oil myelograms and continues to be injected today as an ingredient of steroid suspensions frequently being used to treat back pain.

When diethylene glycol gets into subarachnoid space it produces a chemical meningitis. This typically leads to adhesive arachnoiditis, which is severe scarring of the spinal cord and nerve roots. The most common symptom is constant and agonizing pain which is remarkably disabling. Many patients with adhesive arachnoiditis have taken their own lives as the only means of escaping their agony because adhesive arachnoiditis is rarely a direct cause of death.

The common use of diethylene glycol as a ingredient of steroid suspensions being blindly injected into the spine is a real, present, and serious public heath problem in the United States and Europe today. Remarkably there is no hue and cry evident. The sufferers are not infrequently told that the problem is "in their heads" when a high resolution MRI could provide the specific diagnosis.

Where are the medical and scientific professionals needed to investigate these tragedies? They are not in evidence. The only recourse a patient has today is in the medical-legal (if the statute of limitations hasn't run out) arena. The problem with this venue for society is that the settlements are not publicly propagated and the rest of the unsuspecting potential victims remain essentially uninformed. There just may be a slim chance, at this point in time, that the suffering of our pets from the melamine disaster might just possibly shift the spotlight a bit to the also not-wonderful-world of diethylene glycol."
The information in quotes is copyrighted and reproduced with the permission of Dr. Charles V. Burton of
Burton Reports

Maybe through the concern for our pets the Medical Profession will start acknowledging the truth about their masters.

Monday, July 23, 2007

We the People or at least thats how it is supposed to be.

I have said this many times and I will keep on saying it. No person in America, the most advanced country on the face of the earth should have to suffer from the levels of pain that myself and millions suffer but we do!!! Aren't we supposed to be a civilized, and compassionate society? Very Simple. Big Business in the form of the medical profession and politicians who once elected don't have time for one person like me. There are a few who care. Congressman Mike Rogers has been trying to get the bill below through Congress since 2003. I am in to much pain to write much tonight, but I am begging you to go to the link at the end of this post and call, write, or e-mail your political leaders and ask them to support this bill.

National Pain Care Policy Act Introduced in the U.S. House of Representatives!

Millions of Americans who suffer from pain could soon find relief thanks to legislation introduced in the U.S. House of Representatives today. Representatives Lois Capps (D-CA) and Mike Rogers (R-MI) introduced the National Pain Care Policy Act of 2007, which would improve pain care research, education, training, and access. The pain community has been instrumental in joining forces to support and advance this important legislation.

Key components of the bill include:

The authorization of an Institute of Medicine Conference on Pain Care;
Permanent authorization of the trans-institute Pain Consortium at the National Institutes of Health;
The creation of a grant program to improve health professionals’ understanding and ability to assess and appropriately treat pain; and
The creation of a national public awareness campaign about pain management, conducted by the Department of Health and Human Services, with particular attention to improving access to appropriate pain treatment among underserved populations.

Please click on The American Pain Foundation link below for more information.

The American Pain foundation

Tuesday, July 10, 2007

Have you had an Epidural Shot lately?

I have had to many. I only wish that I had the knowledge 25 years ago that I have today about some of the invasive procedures that I have had performed on My lumbar discs. It is so frustrating when your primary care doctor has never heard of some of them, for example the Chymopapain injection. My back surgeon want even talk about Adhesive Arachnoditis which is probably what I have. Is it lack of knowledge or lack of interest. I don't know, but one Doctor that is considered to be one of the countries formost experts on the subject can explain it. I owe a debt of gratitude to Dr. Charles V Burton and the information he presents on his site. I know of no one more qualified than him on the human spine. If you have severe back problems like myself, I urge you to spend some time there if you really want an education. Any Doctor who thinks it doesn't exist might try telling this lady that it doesn't.

"Subject: Dr. Burton, another severe Adhesive Arachnoiditis sufferer!!
Date: Monday, July 31, 2000 6:15PM

Dear Dr. Burton, (sorry this is long!!)

My name is [xxxxxx] and I am a Registered Nurse. I have been a
nurse for 27 years. I was diagnosed with severe arachnoiditis in 1996. I am a very clear cut case of chemically induced adhesive arachnoiditis, as I have never had any spinal surgery of any kind, nor any other spinal problems, except for the complaint of backpain radiating down my left hip and leg in 1990. It was then that I was subjected to a myelogram/CT using the Iohexol contrast media. They found a bulging disc in the L4/L5 area and "prominent Tarlov Cysts bilaterally". I was thus sent to a pain MD and he proceeded to inject me with Depo-Medrol epidurally x3, each 2 weeks apart. (These were done
"blind" without the use of fluoroscopy[sic]).

I was never told before the myelogram, nor the epidural steroid injections, that one risk was arachnoiditis. (no surprise here!) It is interesting to note that after each steroid injection, I had not less pain, but increased pain. On the second injection, he had to reinject me as he had trouble getting the LP done and had to change levels and reinject. After that episode, I spiked a temp of 103 degrees and had excruciating pain. I called the pain clinic and they seemed
very unconcerned and prescribed me Talwin for the pain, which helped little except make me feel like I was hallucinating. So, I only took one dose. They prescribed me Percocet a few times after that, then sent me on my way. By 1996, I was in such severe, constant pain, that I could not stand it anymore. had been having pain since 1990, but this was at the point where I cried every night.

I was still working as a RN 12 hour shifts in a CCU! I went to a
neurosurgeon, on my own, not bothering to go to my family practice MD, as I felt I must have a spinal problem. (He was not happy with me that I side stepped him and went straight to a neurosurgeon, at the time). He ordered a routine spinal x-ray and MRI without contrast. That showed mild-moderate degenerative disc disease and nothing else. (or so he said). The pain continued. He had prescribed Ultram, which did not help the pain. He then ordered a Myelogram/CT and I was then subjected to another insult to my spine. We did not know, at this point yet, that I had Arachnoiditis. They had difficulty doing the LP for the Myelogram and had to do it a level either above or below the initial stick. It caused me to literally scream in pain. (I have a high pain tolerance too). (or did!!) They did the CT and then apparently[sic], saw something, for they brought me back into the CT room and repeated it, a few levels above the initial CT. After the myelogram and CT this time, they had me get up and sit in a waiting room for 2 hours. I walked from the myelogram table to the CT table and then to the waiting room. Finally, after the second insert into the CT tube, I was sent home.

A couple of days later, the nurse called from the neurosurgeon's office and said the MD now wanted me to have a MRI with contrast. (remember, the first time, he ordered the MRI, but without contrast). A few days later he called me himself on the phone and gave me the diagnosis. He never even saw me in his office!!! He told me and I quote," I'm sorry, but you have arachnoiditis. I was really worried because, at first, I thought you had spinal tumors, but you have
arachnoiditis and there is no cure. I'm sorry but I cannot help you, Goodbye, click!!!! There went the phone, and he never even allowed me to ask what the heck arachnoiditis was!!! I was literally in shock. I had never heard of this disease, even though I am a RN, and now I know why. I researched on my computer and found all the arachnoiditis support groups and began to learn, but I had NO IDEA what I was in for, but no idea!!!!

The last 3 years have been a horror story, bouncing from one pain Dr. to another, to a second neurosurgeon, the MS pump in and out after 1 year( that is another nightmare story in itself), trial of you name it, and the story is the are dumped after so long and the MD.'s refuse to treat you although they all knew I had arachnoiditis. Ther[sic] attitude was blase' to say the least, and nasty, at the worst. I finally attempted suicide in April of this year by taking 80 tablets of clonazapine.(sp?). I was at the point where I was so depressed,
isolated, in such excruciating pain, with bladder and bowel and GI
complications, financial troubles, no family help, and barely staying off the street due to not enough money on SSD and LTD.(Long term disability). I was rushed to the hospital, had a NG tube placed and the charcoal tx. and was placed in a psych unit for 25 days. I do not have any hx. of mental problems in the past and I suffered for years before I finally gave up from
frustration and pain.

The psychiatrist I saw at the hospital told me that the pain MD.s were in the dark ages and my only problem was arachnoiditis and money problems and that he would treat me for life. (unfortunately, he is not a young MD). He prescribed me the Duragesic Transdermal Patch 50mcg. and I was literally amazed at how well it worked. I wondered why no MD in the past had ever tried me on this!!!! I am still having all the finacial[sic] problems to the point where my belongings are in storage and I am staying with a friend because I cannot afford to pay bills with so little income and no prescription coverage. Since, I have LTD, I do not qualify for any Medicaid or state programs etc. and so I have only Medicare which, as you know, has no prescription coverage! I wanted to tell you my story and offer you any help you might want from those of us with this horrific disease. I want the word to get out and I want to help others, although I can barely help myself at
this point, I feel as a RN, I must get the word out about all this."

The information in quotes is the copyrighted property of Dr. Charles Burton and reprinted with his permission.

My attitude in life has always been, that no matter how much you think you know your mind should always be open to learning more, especially from a professional. I just wish that more surgeons would be open to the vast amounts of information available.

Tuesday, July 3, 2007

Do the research before you agree to major surgery!!

You no longer have to be in the dark about your condition or health problem. In todays doctor-patient relationship, you are lucky to get 20 minutes before a procedure. Remember, these surgeons perform many procedures sometimes even in one day. You are the person who has to live with the results of this procedure. You no longer have to rely on what your Doctor or his Nurse tells you, at least you don't if you have basic skills with a computer and an internet connection.

I admit that I have more than basic skills with a computer but you can do it. You can find all of the information that you will ever need and usually you can find a forum or news group filled with people who have the same health problems as you. Most of them are more than willing to exchange stories with you, give you tips and in many cases refer you to other websites for additional information on your topic. Research can be a gratifying and exciting way to not only educate yourself on your condition but make friends from all over the world.

After my last back surgery which was actually 1991, my life was a living Hell. It was a year before I could even stand up straight. I vowed that I would learn everything I could about the human body, especially the Spine.. I did just that and I am still learning.

I have no desire to be a surgeon and I am not one. I am one of the most informed patients that a surgeon will ever talk to and most of them don't like it. I could care less because I have already been down this road. You have surgery, you get a couple of follow up appointments and then you are on your own. Hopefully the surgery helped. If it does great, if it doesn't you are own your own and its your problem. Sadly few spine surgeons have the patients best interests at heart, especially today.


Once again, do your research. You can find it on the internet and if you can't leave me a comment and I will research it for you.

Friday, June 22, 2007

We are nothing but a file!!

To continue my story from the last post, When my wife got me home, I was in horrible pain. After about 2 weeks of this my wife requested a meeting with the Doctor who performed the surgery. At first he told my wife that he just didn't believe that I was in that kind of pain. Finally, he decided that I should come back to the hospital for another CT scan. He said, after the test, that it looked liked a small piece of bone that had come loose during the surgery. So Guess what!! I had the same surgery all over again. I just thought I was in pain before. After about 2 weeks he refused to even take our calls. He did refer me to another surgeon, this time an orthopedic surgeon. At the time there was a turf battle going on between neurosurgeons and orthopedic surgeons about which speciality should be operating on the spine. That is one of, if not the main reason that the Spine Surgery Board was created. Today both groups are board certified spine surgeons.

The orthopedic surgeon looked at the test and kinda shook his head, looked a me and said, I don't understand why he didn't do a nerve decompression and then a fusion. Another opinion!!

What neither of them knew was that neither procedure would have worked because I had spinal cord nerve damage from the chymopapain injections and the other test they did. Hey believe it or not, at the time they were using contrast materials for mylograms that had "glycol ethylene" in them. In case you don't know what that is, it is the active ingrediant used in car antifreeze. So my life of unbearable pain would continue because that was 15 years ago. I am sitting here 25 years later wandering if I can even sit at this computer long enough to complete this post. However, that is not the worst part. There are several million people out there tonight living the same lives that I am living.

Monday, June 11, 2007

My continuing Saga with Chronic Pain

The Chymopapain injection, my first medical procedure as explained in earlier posts, sounded simple enough as explained to me. The problem was that it was largely unproven and the sugeron who performed the procedure had just completed the one day training course in Canada. I, of course didn't know this until later. Photos that my wife took of the procedure did not match up with the explanation that the operation physician gave me before the operation. Of course, it wasn't until several years later that I learned the real truth about Chymopapain. Go to my entry of "The tale of the floppy eared bunney" where noted Neurosurgeon Dr. Charles V. Burton's article explains.

When I woke up from the procedure I was in unbearable severe pain and that pain would continue for months, then the months turned into years. After about 5 years I started going to different Doctors looking for some other treatment or surgery that might help the pain. I got a variety of opinions, depending on whether the surgeon was a neurosurgeon or orthopedic surgeon. Finally in 1991 I saw a neurosurgeon who said that I needed to have a laminectomy. At the time I had done very little research on the spine. Today there is no excuse for a patient not getting all of the information they need with the rapid growth of the internet. I don't care what your condition is, there is so much credible information out there, so DO YOUR RESEARCH!!

One of the things I learned early on, is that many Doctors understandably, do not want to clean up someone elses "mess". When I look back on the reason that I chose this particular Doctor, I think it was his personality. He assured me that a laminectomy would take care of my problems. At that time I didn't know exactly what a laminectomy was except what he told me. Armed with the information that I have today, I would have known that at the least it would not help my medical problems and the worst it would make them worse. Sure enough, it made them worse. I woke up from the surgery in absolute agony. Even though I kept asking for my doctor he, did not come by my room at all the first day. Finally on the second day my wife was very upset because my pain level was so high and the nurses would not increase my pain medication. She called the office of the doctor who had performed the surgery and was told he had left the day after my surgery for a 2 week vacation. I was furious and the next day I asked to be discharged from the hospital. The next year of my life I lived in pure hell. Had it not have been for a primary care physican I do not think I would have made it through that year. True story FOLKS!! Unfortunately, this wasn't the end of it.

Tuesday, June 5, 2007

Some Doctors have a valid point about prescribing opiods

I was reading an article in the Wall Street Journal earlier tonight about a Doctor who seemed sincere in his efforts to strike a balance between prescribing powerful drug medications that so many people desperately need to live in order to have a decent life. For Doctors like this one I can understand how frustrating it can be for the one's who want to sincerely help people like myself and at the same time not jepordize their careers. He is right in saying there is a balance that people like him have to take when prescribing opiods.

As an example he talked about a patient that called his office multiple times on a weekend and even resorting to calling his home and then trying to circumvent him to get the Doctor on call that weekend. This is an example of a patient who may or may not be faking their problems just to get access to highly addictive drugs. The thing that I really admired about this Dr. is he stated; this particular patient would have to seek treatment with an addiction medicine specialist before he would try to help them anymore. He also had several things to say about the pain management specialists who only want to do expensive steriod shots and physical thearpy, then send the patients back to primary care Doctors like him once they had used up all of the patients insurance that they would pay. These Doctors have a legitiate right to be angry. I have heard this story more than once from primary care Doctors. I understand their frusteration.

The thing that I admired most about this Doctor was that he wasn't giving up on his patients that he knew desperately needed these pain medications or opiods to even exist. In cases like this PATIENTS have a responsibility to not use their Doctor and appreciate the fact that he is trying to help them.

I have been going to the same Doctor for 15 years. I do not miss an appointment. I have been taking the same amount of medication for the past 5 years. I have not ask for increases in my medication. I have never lost a prescription and I corporate with him in any way that he asks. That is , I feel, my duty to him and it is the duty of everyone in chronic pain. DO NOT ABUSE YOUR DOCTORS TRUST!!!

Wednesday, May 30, 2007

What you, the Chronic Pain sufferer can do.

If you are suffering from Chronic Pain like I am PLEASE don't just sit there doing nothing. As for as I am concerned a medical doctor that lets a patient walk out of their office, knowing that individual is suffering at a level of pain they can not endure is violating the very oath they took to become a Doctor in the first place. The statistics are out there. You are paying that person to help you, not just to take your money. As for as I am concerned, the millions of people in this country alone that have to suffer from Chronic Pain are having their "Human Rights" violated every day, by the medical profession that refuses to treat them, by the news media that stigmatizes us and by the politicans who are more interested in catering to the lobbyists than protecting us and making laws to make sure we get the proper treatment.

Even Veterans from Viet Nam all the way through the Veterans of Iraq and other recent conflicts are having the same problems finding treatment and that is a damn shame. That is why it is so important for everyone to get involved in some type of
advocacy group. Look on the left side of my blog at my "favorite sites", pick one and join. Do like I am doing. Take advantage of all of the tools the internet has to offer to have your voice heard. That is the only we will ever get our voice heard.
Call your Congressman and Senators, engage in letter writing to them. I can promise you that the politicans are afraid of the "Blogs", because that is one of the best tools we have to get our voices heard.

Wednesday, May 23, 2007

This research may hold promise for Chronic Pain

I wanted to share this article with all of the Chronic Pain sufferers. I have grown very skeptical over the years, which is not my nature. I am just tired of hurting.
Even though this kind of research probably want help me, it may hold promise for others who are younger than me. So I wanted to share it with you.

"Whether they're fighting postoperative soreness or relieving chronic discomfort from conditions such as cancer, morphine and other opioids are powerful weapons against pain. Now, in research published online in Nature Neuroscience, Brown University scientists give one reason why these painkillers work so well.

The secret: They act on a special form of N-type calcium channel, the cellular gatekeepers that help control pain messages passed between nerve cells. By blocking these channels, pain signals are inhibited. These findings not only shed important light on how the body controls pain, they could be a boon to drug development.

"We've known that drugs such as morphine are highly effective at blocking calcium channels, but we've never known precisely why - until now," said Brown neuroscientist Diane Lipscombe, who led the research. "With this new understanding of how opioids work on calcium channels, drug companies could develop effective new painkillers."

Lipscombe, a professor in the Department of Neuroscience, is an expert in N-type calcium channels, critical players in the pain pathway. At the synapse - the point of connection between nerve cells - N-type channels control the release of neurotransmitters. These chemicals carry messages between nerve cells - messages that include sensations of pain. So if you block N-type channels, you can block pain.

But all of these channels shouldn't be closed, Lipscombe explained. That's because some pain signals - "That stove is hot!" - are needed to survive. "You don't want to shut off all pain signals," she said. "You just want to dampen some of them down."

In 2004, Lipscombe and her colleagues discovered a unique form of the N-type channel in nociceptors, neurons that carry pain signals to the spinal cord. These are the channels that opioids act on. But what makes the channels in nociceptors so special?

In their new work, Lipscombe and her team uncover the answer. All N-type channels are made up of a string of about 2,400 amino acids. In nociceptor N-type channels, that string differs by a mere 14 amino acids, Lipscombe and her team learned. This small difference in molecular make-up makes these channels much more sensitive to the pain-blocking action of opioids.

"In nociceptor N-type channels, you get double-barreled inhibitory action," she explained."


Jesica Raingo, a Brown postdoctoral research fellow, is lead author of the Nature Neuroscience article. Andrew Castiglioni, a former Brown graduate student, participated in the research.

The National Institute of Neurological Disorders and Stroke funded the work.

Contact: Wendy Lawton
Brown University

Wednesday, May 16, 2007

The main problem with getting proper treatment for Chronic pain is here.

How many times have we heard politicians on the campaign trail making all of their false promises to get elected. Try to get one to talk to you after they get elected and see what happens. Even though my core values are conservative and I have voted Republican all of my life, I will never do it again. I am about as sick of one side as I am the other. As soon as they get elected they immediately start running for re-election. Then they are interested primarily in the big money guys. The big lobbyists. Of course the Medical Industry is supported by the Republicans and the Trial Lawyers by the Democrats.

Then people like you and me can stand in line. I have personally contacted both of my U.S. Senators, my Representatives both State and Federal trying to arrange a meeting on the current undertreatment of Chronic Pain in this country. Usually all I get is an autoresponder generated generic letter, or a news letter. What have they done since the new Congress? Nothing except argue and bicker about Attorneys Generals. To his credit Rep. Mike Rogers of Michigan and the late Charlie Norwood has had a bill in the house, H.R. 1020 since 2003, called the National Pain Care Policy and so far it hasn't gotten out of committee. Why? They don't give a damn. I have vowed that I will never stop my fight for better treatment of the 70 million people suffering from pain if I have to go and sit on the Capitol steps.

We have thousands of brave men and women who have been mangeled by an unnecessary war and even they aren't getting the proper treatment and that is a shame. If you don't believe me just go to The american Pain Foundation and see for yourself. And if that is not enough, we have a generation of people (the Baby Boomers) turning 60 years old at the rate of almost 8,000 per day. What is congress doing about it? Nothing but making deals and making sure they get their Pork Projects.

President Bush decides we need to have a war on drugs, but despite their best efforts the DEA hasn't been able to steem the flow of illegal drugs or narcotics so when the DEA, which was run by Asa Hutchinson gets called on the carpet by some congressional committee, poseing for a C-span Camera what happens? The DEA starts going after the few Physicians who are trying to help people like me make it through the day.

If a person has the diagnosis to back it up and a Doctor writes a prescription for the medication it is not a Narcotic. It is a Schedule II controlled substance approved by the FDA for the treatment of Chronic pain. So what in the hell is the DEA doing in the Medical business. You would think they would have their hands full going after the drug smugglers who are still bringing record amounts of illegal drugs into this country for our Children to get their hands on. I have never taken an illegal drug in my life nor do I believe that people who are truly in Chronic Pain do either.

Friday, May 11, 2007

The "News Media" plays a large role in the undertreatment of Chronic Pain

Whether it is bias or just chasing and over sensationalizing a story, the "news media" plays a very large role in the undertreatment and stigmatizing of chronic pain. Whether it is some celebrity, someone in sports, etc. that is all you see and hear. For example All we have heard for weeks is Anna Nichole Smith and Methadone, Britney Spears, or some other "quote" famous person going into rehab. for some type of drug abuse treatment. You can almost change channels on the big three news networks and never skip a word. If the DEA has a drug bust, you hear that over and over.

I have personally sent e-mails to John Gibson and Bill O'Rielly of Fox news and ask them to do a piece on the undertreatment of chronic pain in America. I didn't even get an answer to my e-mail. I guess it isn't sensational enough.

Again I am not advocating using powerful pain medication except when an individual has exausted surgery and ever other means and still is in unrelenting pain. Of course in my case, the failed surgeries are the reason for my battle for chronic pain.

I also realize that there is a drug problem in many of our high schools. I am a grand father of three children and I watch them like a hawk for any indications of drug use.

My own primary care Dr. told me a few months ago that I would not believe the people that came to his office argueing with the office personal about pain medication. He never did clarify if those people were in pain or were truly drug addicts. I said to him, what does that have to do with me? I am not the type of person that would ever do anything like that, nor would any true chronic pain sufferer. Basicly his practice is based on the fact that because of a few bad patients all pain patients should be treated the same way.

Again you never hear the media talk about both sides of the story. Its just the sensational stories, narcotics, addiction!! So with the exception of people like myself, who are continually researching chronic pain, the majority of the public believes the news media, because thats all they hear. What happens? Nothing. The "silent epidemic" goes on and it takes its toll on people. Many give in and take their lives. Some, like me, go on day after day fighting the establishment and all the time asking God why?

Friday, May 4, 2007

Is the undertreatment of Chronic Pain solely the fault of the medical Proffesion? Absolutely Not!!

Yesterday I had to take my little dog Aaron to his Vet. for a problem. It is amazing to watch other people, just like me, there with their beloved pets. In my case, I love mine so much, I will spare no expense when it comes to his treatment. His Dr. the Veterinarian is great and I love the amount of time she spends with him, and of course, all the while making sure that I understood everything.

While I was waiting for his appointment, I got into a conversation with a lady in the waiting room, who was also waiting with her "little dog". We talked about pets for awhile, then the conversation turned to "Chronic pain". I was in a lot of pain and even though I never mentioned it, I guess she must have noticed it. We talked about it briefly and then she replied, "my sister has lived in chronic pain for 25 years but now the "Doctors have gotten her addicted to Methadone".

I immediately ran that statement through my mind for a few seconds before I said anything. I then turned to her and said Doctors don't "get anyone addicted". Addiction is a choice, its a behavorial problem and as a matter of fact, it can even be inherited. I also told her that her sister needed to be treated by an "Addiction Medicine Specialist. As the conversation progressed, she finally admitted that her sister had been a drug addict for years, that the family couldn't do anything with her and she was now living on the streets. Then the clincher, she said actually I don't think she was ever in chronic pain, she just wanted the pills. Then she looked at me, almost as if she was reading my mind and said, I guess people like her really hurt people like you who truely need pain medication. I replied, yes they sure do.

So, my point is, this is another part of the problem: Many families will have a member, who they know is a drug addict and most often they have never been in pain a day in their lives. Yet , if they go out in the street, obtain something like oxycontin or whatever, instead of blaming themselves for not getting help for the family member, they choose to ignore it until it is to late. Then they want to go sue someone, whether it be the drug manufacter or a Doctor. Scenarios like this do one thing.
They make it virtually impossible for people who are truely suffering to get help from anyone. I would be remise if I didn't say, this presents a problem for the Doctor who truely wants to help and an even bigger one for the true Chronic pain sufferer.

Saturday, April 28, 2007

The Tale of the Floppy Eared Bunny

"(The Saga of Chymopapain)
As the laboratory staff watched in awe the rabbit's ears began to wilt following the intravenous injection of the enzyme chymopapain. It remained for orthopedic surgeon Lyman Smith to turn this observation into a new therapy for the treatment of herniated discs. Why, he reasoned couldn't chymopapain also dissolve the collagen in a herniated disc? From this basic observation the saga of chemonucleolysis (enzymatic dissolution of disc collagen) with chymopapain (the active ingredient in Adolf's meat tenderizer) was born. It turned out to be a textbook example of how not to do things in medicine including high grade marketing blitz (the " M2H" factor). This resulted in a patient stampede to have chemonucleolysis.
There can be no question but that the M2H factor for chymopapain was one of highest ever recorded. Because it wasn't released by the United States Food and Drug Administration until November 10, 1983 a large cottage industry had been created in Canada starting in the 1970s. This was a modern version of the "underground railroad" where lines of U.S. clients were often passed through enzymatic assembly lines (a process which has become reversed in recent years). The good news was that only a small number of Canadian Orthopedists and Neurosurgeons practiced chemonucleolysis and they were expert at it. But even the doctors became caught up in the hype. One prominent Canadian orthopedic chymopapain advocate stated at a medical meeting that all he required was a "few cc's of chymopapain" to take care of all of his spine patients! The widespread Canadian expertise was unfortunately not also reflected in the United States where approximately 7,000 orthopedic and neurosurgeons took a one day "training" course in this needle technique and pronounced themselves fully qualified to perform chemonucleolysis at their local hospitals (whose credentialing committees nodded in assent) after Food and Drug Association approval. Those few hospitals who believed that some degree of apprenticeship was required by these neo-procedurists typically gave in to the argument that since other institutions weren't requiring such that their physicians would become non-competitive and thus loose patients. Their credentialing committees then rubber stamped this example of poor medical practice and hospital self-interest.
While some of the 7,000 American trainees actually had some prior experience with needling techniques and fluoroscopic imaging many did not. The sad part of this tale is that the inadvertent deposition of chymopapain into nerve tissue as well as the sub-arachnoid space created some horrendous problems (including stroke, paraplegia, and death) for a significant number of patients. Even though injecting chymopapain simply required placing the tip of a needle in the nucleus pulposus of a disc many practitioners learned that this was not as simple as it seemed. These needles often ended up in other locations as shown below.

The incidence and prevalence of unnecessary, but serious, complications with the use of chymopapain gave it such a bad name that it soon fell into disuse in the United States. Now, one might think that this is was the end of this tale, but it isn't. Chemonucleolysis with chymopapain (or other enzymes such as collagenase) really weren't a bad idea if qualified people were involved in injecting them. The real problem was the high M2H factor which created a feeding frenzy for patients as well as their physicians.
As it turned out, even when chymopapain was injected into the right location there were important associated liabilities. A major example of this was replacing leg pain (by dissolving the disc) with incapacitating back pain caused by the sudden collapse of the disc interspace producing pressure on the facet joints. Another problem was the high level of allergenicity of the drug itself.
Unfortunately the use of chymopapain created new problems for patients. Could the resulting back pain have been addressed?. The answer is yes, by the use of anti-gravitational traction (but it wasn't). After a respectful period of time chemonucleolysis with chymopapain began to re-emerge in Europe in a lower dose application....where it remains today. In the United States it continues to remain unused and shunned. Despite the tale of chymopapain and its unfortunate demise the M2H phenomenon is still alive and well in the over-promoting of medical devices and techniques even today. "

The above article is the property of and used with the permission of Dr. Charles V. Burton

It is with the discovery of his website and the study of his vast knowledge and material that has helped me endure and understand the truth of the first of many procedures, that would take me down my 25 year (so far) path to devastating Chronic Pain.

Wednesday, April 18, 2007

The more Doctors I see the more frustrated I get

This is a photo of me and my little Bichon Frise, Aaron. I don't know what I would do without him, and I don't know what I will do when he is gone. Remember I said earlier that when you live a life of Chronic pain, the first to go are your friends, then your family, but he is always

there, no matter what.
I saw a new Doctor today and got the usual, we can do an epidural shot to which I replied NO! Then the next thing is the no I can't prescribe anything for pain or at least anything that will help.
I look at my little dog that I love so much, the one that is always there for me, yet if I knew that he was in the kind of pain that I am in, that he was suffering like I am, I would take him and have him put to sleep because I couldn't stand to see him suffer. It would be one of the hardest things that I have ever done in my life, yet I would do it out of love for him.
But what do we do in our so-called civilized society for people in unbearable pain. Nothing!! Oh they will do surgery on you just as long as you will let them. More surgery is not going to help someone like me. The damage has already been done. Nerves in your central nervous system don't regenerate themselves. I am not saying that there aren't any good and ethical physicians out there because there are. But I am saying that has not been my experience. I don't entirely blame the medical profession either. Much of it has to do with politics.
The Bush Administrations war on drugs has scared many physicians from prescribing opiods because they are afraid of the DEA. I am no drug addict and neither are the millions of people like me who have to depend on powerful pain medication just to exist, forget about having any kind of meaninful life. Just to exist. So where does that leave us? I'll tell you where it leaves us. Suffering!!! Maybe they should pass a law to make it legal to do what I would have to do to my little dog, Aaron. Just put us to sleep!!

Saturday, April 14, 2007

How do we make our voices heard

Sometimes I really want to give up. But then I ask myself-What does that mean, Kill myself. I really don't want to die. I know that is not the answer. Life is short enough if you have a relatively painless life and besides I love my family, I want to watch my little grand daughters grow up. You can't run away from Chronic Pain. Its always there 24/7. I love this beautiful earth and marvel at "Gods Creation". The government, the physicians and the DEA are so caught up in as they put it "drug abuse" especially the opiods and to a lesser degree the CNS drugs they don't understand that people who are truly in Chronic Pain hate taking drugs, I know I do. For one thing you are always fighting the "side effects" of powerful pain medications. I have a hard time taking anything, even anti-inflamatory, antibiotics and especially opiods. I will never understand how any person who has a love of life as I do, would want to take any type mind altering drug. I guess that is why most people who suffer as I do don't become addicted. They don't even want to take them in the first place. They just want a life. And to their credit, the DEA has issued guidelines and as long as the Practicioner and the patient follow those rules they have stated that they want bother the doctor or the patient. All of the state medical boards have agreed upon the same frame work, but still finding a doctor to help you, unless you have a long term relationship with them is almost impossible. I am sorry to pick on the pain management doctors, but it is the truth. Injecting shots into the Epidural area of your spine rarely helps, they are extremely expensive and they are dangerous. Injecting contrast materials into my spine that have been proven to be toxic is exactly what I suffer from today.
It is called Adhesive Arocnoditis, which is burned nerves in your spinal cord. In spite of that I still have to have two fusions in the lumbar region just for stability. Not only will it not help the main source of my pain, there is a good chance it will make it worse. My wife called my surgeon's nurse over a week ago to set up the surgery and we still have not received a phone call from their office. This is insane!! Why do they do this? I guess, just because they can.

Monday, April 9, 2007

Who is supposed to look out for us?

All over this country people are suffering. Old people are laying in "Old age homes and hospitals being undertreated for their pain". People from all walks of life are having to endure levels of pain that is an absolute violation of "human rights". The very profession that we are supposed to look to to help us when we are in pain has stigmatized us. Just walk into a doctors office and mention "chronic pain" and you have immediately entered into a "hostile relationship" with the very person that is supposed to help you. They will however, take your money. What is the first thing they ask you for if you are a new patient? Where are you hurting? NO! What is your problem? NO! Do you have insurance coverage? YES, that is the first thing you hear. The healthcare system in this country is an absolute disaster. I know there are many people in this that do not have health insurance, but I have the best insurance money can buy and it has not helped me. Something has to be done to hold the medical profession accountable for not doing what they are supposed to do.

I have suffered 23 years from unimaginable Chronic Pain, not as a result of the original injury I sustained, but because of the medical procedures done to me. But if I try to get a doctor to help with controlling my pain I am looked at with suspicion. Their excuse is I am afraid you will become addicted. This is ridiculous, yet it happens every day in this country and I will fight it as long as I live.

Friday, April 6, 2007

"There are many minimally invasive spine procedures being performed today. Some, such as epidural steroid injections are often used with little appreciation or understanding of the patient's real diagnosis ("shotgun therapy") and sometimes with no understanding that the patient does not even have an anatomic epidural space (i.e. obliterated by prior spine surgery). Most certainly, in the "physician do no harm" department ill-advised and ill-performed epidural steroid injections have created devastating lifelong problems for significant numbers of unsuspecting patients.

Other minimally invasive procedures such as percutaneous radio-frequency facet blocks (PRFFNB) which have benefited many over many decades are therapeutic, but destructive, in that they cauterize normal nerves to achieve their effect. The value of such a procedure is that the benefit to the patient outweighs the minimal risk."

Source: Dr। Charles Burton, M.D. read more at,Min-Invasive.htm

If there is one person in this country that I consider an expert on the spine, it is Dr. Burton. I thank him for giving me permission to use some of his information.

As I may have said before, the procedures performed on me in the early 1980s have destroyed my life, yet the very surgeon that I am presently seeing wants to do fusions on the affected discs. But when I try to talk to him about the present condition of the nerves in my spinal cord he want even talk about it. It is like he don't believe there is a condition called "Adhesive Arocnoditis." Evidently they aren't taught the failures in medical school. This much I do know. I will be staying up until 4:00 A.M. in the morning. Why? I am in to much pain to sleep. Try living like that for a few weeks much less years like I have done.

Friday, March 30, 2007

More on my Pain Management visit

On my second visit My wife was with me again. This Doctor was an anesthesiologist. Aparently, at least in the area where I live, every Pain Doctor is an anesthesiologist and from past experience I knew that he was going to want to inject me with Epidural shots. Not only is this a very expensive procedure, but it is a very lucrative business. Injections in the spineal area can be very dangerous. These type medical practices are being called "procedure Mills" even by other doctors in the medical industry, especially primary care doctors because they know as soon as the anesthesiologists finish their injections they will only send the patients back to them for pain medication. I can not believe that insurance companies keep paying for these procedures.

After he found out my past medical history he did not want to inject me, because at least he had enough sense to know that he was going do more harm than good. He did say he would like to inject the facet joints. I almost laughed in his face. Because of my own knowledge I knew that it was a very conservative procedure, of course he would still get his $2,500.00. My psychiatrist with whom I have had a 15 year relationship has been furnishing my medications out of compassion but I knew that he had no desire to be in pain management.

My wife finally said to the anesthesiologist, O.K. Jerry's quality of life without something to help the pain is a 1. He has no history of any kind of addiction. His quality of life on the medication now is about a 5. Why can't you prescribe medication that will at least give him that quality of life. The Doctor kinda stuttered and stammered around then said well, let me talk to your other Doctors. It was very clear that all he was doing was trying to get rid of us. About a week later I received a letter from him saying that he didn't feel that he could help me, that he had referred me back to my primary care doctor and psychiatrist for them to continue my medication. I was not suprised, I knew it was coming. Something has to be done in the area of pain management so people who are in so much pain receive the proper treatment without being stigmatized as drug addicts.