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.

Source:http://www.painfoundation.org/

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.

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.

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.

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.

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.

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

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 same...you 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. http://www.burtonreport.com/InfSpine/AdhesArachE-Mail.htm

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.