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.