A Pained Life: Why Doesn’t My Doctor Hear Me?

A Pained Life: Why Doesn’t My Doctor Hear Me?

I am going to make an embarrassing admission. I had breast reduction surgery about 15 years ago.

For years, I had been having pain and discomfort in my neck, back and shoulders. Each time I saw my neurosurgeon, I mentioned it. His answer was always the same: Nothing to worry about.

I accepted it and let it go. Each appointment was a repeat of the last. Nothing to worry about.

Finally, it was too much. Because I was “top heavy” I thought a breast reduction might be the answer. A plastic surgeon agreed and I had the operation.

Bad NewsI looked better, but, son of a gun, I still had neck, back and shoulder pain.

Something was not right. In fact, the pain and discomfort were getting worse. Merely holding up my head was exhausting.

At the next doctor’s appointment I pressed the issue, “Something has got to be wrong.”

He sent me for x-rays. My mouth fell open as I heard and saw the results. I was told that another neurosurgeon, who had operated on me in the past, “has been worried about your neck for years” because it was “falling down.”

No one had said anything to me, but suddenly it was being treated as somewhat of an emergency.

“I want you to go see an orthopedic surgeon, right now,” he said.

An hour later that doctor was looking at my x-rays. “Your neck is literally falling down. You must have surgery. You could be paralyzed just walking down the street,” he told me.

Three surgeons would be required for the operation; with one doctor to open my neck, another to get to the vertebrae, and the third to put in 2 metal clamps and 12 pins to hold up my neck.

It took a month to get the three of them together in the operating room. Then things turned for the worst. Something went wrong, so they could put in only one clamp. That made my neck even more unstable.

“If you sit or stand up you will become paralyzed and you will die,” I was told.

Three weeks later they put in the second clamp, which stabilized my neck. I still have some pain because the metal contracts and expands with the weather, along with some muscle pain.

Why am I telling you this?

Because it was a gigantic lesson to me.

I complained, but let it go when the doctor dismissed my complaint. Even as the pain got worse and I could see my neck was literally getting shorter, I let it go.

I had no idea that my neck was essentially breaking down. On the x-ray, the vertebrae in my neck were not in a straight line. They had fallen into a “V” position.

In a follow-up appointment the doctor turned to a resident and said, “This is the kind of x-ray that when you see it you want to leave the room and vomit.”

The doctors knew I was having problems and one had been worried about it for years. Yet no one said anything to me.

I learned growing up, and from some doctors as well, that you listen to authority figures. Say it once and then let it go, especially if they do.

I should have persevered. “I’m not sure you understand. I have bad neck pain.”

It was not just the neurosurgeon. The plastic surgeon never even considered the pain might not have been caused by the heaviness of my chest.

When we have a problem we have to be our own best advocates and be annoyingly repetitive if necessary.

It is our body and our life. If we don’t cheerlead for ourselves, if we don’t make noise and push forward for what we need, then we will not get it. Or by the time we do it may have turned into something much worse.

Please, use me as your cautionary tale.

And SPEAK UP!

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

There are 36 comments for this article
  1. Dr. Craig A. Maxwell at 9:07 pm

    I’m so sorry this happened. You did the right thing by telling your doctor about your pain over and over. He should have paid better attention instead of dismissing you. I agree with what Dr. Rodriguez said; when traditional and complementary medicine split off, patients began being treated more like body parts instead of whole people by the conventional camp.

  2. John Quintner at 3:35 pm

    Dr Rodrigues, if people in pain can “do it themselves” (which is a nonsense), why then would they need to seek help from Washington?

  3. Stephen S. Rodrigues, MD at 7:46 am

    This will help others and Ms. Carol.

    Society is broken, distracted and medicine as fallen victim to the 7 sins, so you have to help yourselves. Rally your friends, family and therapist to assist in your care. Learn how to treat yourself with myofascial release by hands and with tools. The tools of myofascial release are yoga, stretching, your hands, balls, bars and with needles. Yes, do it yourself acupuncture/needles!

    Call Washington and ask the legislators to change the laws so you can have access to these tools.

  4. Dennis Kinch at 12:48 am

    There’s not much to say here. The argument of right medicine and wrong medicine is up to some court or board of directors or something. The question will always remain, “Can we ever stop what happened to Carol, or Louisiana residents, or the many millions of people in the chronic pain system, in many countries, not just the US, from happening over and over again?” And…
    Why is Carol taking the blame here? She is. Read it again. She is telling patients to be more vociferous and noisy and to push forward, as she didn’t…! She shouldn’t have to.

    Practitioners need to represent! Anyways, if she had “pushed forward” she would have been called “incorrigible” and would have been denied benefits. I know this ending firsthand.

    Sorry, but the blame falls squarely on her doctors’ shoulders. So we, as patients, need to be everything Carol suggests, but not to our doctors… to our politicians and to anyone who will listen who can vote!

  5. BL at 5:13 pm

    Dennis Kinch, Thanks. It is a combination of insurance companies and governmental agencies. The scare tactics from the powers that be about drug abuse inpart, has created this problem, in my opinion. The focus is so much on the drug abusers, that no one is paying attention or caring about the chronic pain patients. Those with good insurance and/or resources have the option of continuing to seek treatment unti they find what they are looking for.
    Those with poor insurance and little money don’t have a choice.

    Anything on the drug abuse problem gets high ratings on the evening news and votes for politicians. Anything about chronic pain patients having to go into nursing homes many yrs before the might have because they can’t take care of themselves at home because of lack of chronic pain treatment won’t get evening news ratings or politicians votes. They go with what gets them the most of what they want.

    Chronic severe pain patients won’t be heard. It takes putting pressure on politicians for them to hear you. And when someone lives with untreated or undertreated chronic severe pain, they don’t have the physical, mental or emotional energy to do this. Maybe as more and more patients have their meds reduced or stopped with nothing offered that gives the same level of relief, they will realize that they are being affected by this also and whie they are still able, they will get the politicians attention. Beginning in 2010, Senator Charles Grassley sent letters to states demanding to know what they were going to do about their medicaid providers that were high prescibers of pain meds and certain other meds. In 2014, Medicare Prescription Part D is beginning to pay close attention to prescribers that are high prescribers of pain meds and other meds. There is even a website where you can look up a dr and see what meds he/she prescribes the most and the percentage of Medicare Patients they have. This info is 3 yrs behind, but it’s out there. Private and governmentl insurance companies are demanding more and more info from drs about the patients they prescribe pain meds to.

    One other thing and I’ll shut up. Personally, I don’t believe the number of deaths from prescription drug abuse that have been given by the CDC and others. I have looked and looked for detailed info regarding these stats. For example, what were autopsy results, what other meds were they on besides pain meds, was alcohol or other drugs not prescribed involved/in their system, what was their age and the diseases they were diagnoised with prior to death, etc. I have read several government reports that have stated that the info on these stats are not reliable. Yet, we are see them everywhere we turn, and so do out drs, politicians and those who make the day to day decisions and policies of the insurance companies.

  6. John Quintner at 4:57 pm

    Dennis, I also read this comment and found it to be appalling. Your analysis of the “pain scene” in your country is disturbing, to say the least.

    My heated disagreement with Dr Rodrigues has nothing to do with insurance companies. It is simply that the evidence in favour of so-called myofascial therapy is decidedly thin on the ground (and that is being charitable) and does not justify inserting needles into muscles that have been wrongly found guilty of causing pain.

    I know there is a huge health care industry that has been spawned by the proponents of Myofascial Pain/Trigger Point theory, most of whom have been identified by Dr Rodrigues. But this does not alter the inescapable fact that their theory is based upon pure speculation. Yes, it is sad but true!

  7. Dennis Kinch at 11:11 am

    OMG!, bl, this is one sad story. I cannot believe the state of Louisiana Medicaid will not cover chronic pain! Disgusting! This is so un-American if you believe at all in the Declaration! This is what I mean about one day the whole country will be on socialized medicine and it will be the fault of irrational behavior like this. There must be a lot of sick people who aren’t getting proper,(or any) medical help.
    In states I’ve seen with tight Medicaid prohibitive measures, the ER’s of all the hospitals are flooded with non-emergency patients, the streets are loaded with patients, (especially vets) and everyone is trying to get pain meds from dealers, doctor and pharmacy “shopping” is prevalent and more… all because there is no system to deal with Medicaid patients.
    This so sad, and so unnecessary. Like refuges from a war, sick people need to start flocking towards good medicine or medical coverage areas near them and this is especially true for chronic pain. Then Louisiana will be the healthiest state in the union, which I guess is what they want. (did they learn medicine under Saddam Hussein?)
    I’m so sorry to have to apologize again for an inadequate American medical system, but I am truly sorry. Thank God for people like you and for the courage of your patient. maybe they can qualify for some kind of disaster relief?

    @Drs Stephen and Q – And yet again, both sides are right about the other one’s wrongs…and insurance is the culprit.

  8. BL at 9:11 pm

    I’ve been helping someone who is on Medicaid in Louisiana. Louisiana Medicaid Program Manual for Professional Services says “Louisiana Medicaid does not cover any services for chronic pain management.” No Pain Management dr or clinic accepts Medicaid. The anesthesiologist that accept Medicaid only work do surgeries in hospitals.The Neurologists won’t do pain management, because Medicaid won’t pay for it. The pcps won’t do pain managment because they don’t want their waiting rooms filling up with medicaid patients. The public hospital won’t even accept Medicaid for pain management.

    The person I’m helping or tryng to help is on SSI for painful and debilitating conditions. She was doing very well until several yrs ago when her dr left the state. The dr she has now has been prescribing her 1 lortab 10 every other day. He was writting the rx for 30 and she would go in every 40-45 days. Then he reduced it to 20 tablets a few months ago. She is in bed 23 hrs & 30 mins a day, every day and this has been going on for several yrs. The last time he went in she told her dr on the days she didn’t take the lortab that she was taking 1,000 mg tylenol every 6 hrs, just so she could lay in bed and not be in severe pain. He told her she was going to die is she continued the tylenol. Then he said he wasn’t going to give her any more lortab.

    I have read her medical records from before she was on disability til now, there is no history of drug abuse or diversion. But, there are diagnostic test resuts and notes showing her ability her ability to function with and without the meds. The last time any dr spend more than 5 mins with her, long enough to do this tyoe if assessment was over 7 yrs ago. He choices now are to go into a nursing hoe and suffer more than she already is or let the tylenol kill her. For her to have the money to pay for pain management, she would have to move onto the streets. She is in her late 50’s.

    Thank you for listening. I am so angry and frustrated with dr & insurance companies that just do not care. But, unless someone has experienced this personally or has someone close to them going through it, they do not believe it exists.

  9. John Quintner at 6:28 pm

    Dr Rodrigues, when you assert that the problem is “in the muscles and connective tissues,” may I again remind you that this is pure speculation unsupported by any scientific evidence. The substantial evidence base informs us that needling, whether “dry” or “wet,” results in no demonstrable medium- to long-term benefit apart from ubiquitous contextual effects and counter-irritation analgesia. Needling of muscles has no place in a regimen of evidence-informed treatment. The work of the past icons you like to quote took us down a blind alleyway.

  10. Stephen S. Rodrigues, MD at 12:07 pm

    @ Dennis
    Excellent point of having a patient centered healthcare system. The major barrier to this is the present systems are for profit. The for-profit ideology is what got us here. Traditional Medicine view the system as an assembly line or as a conveyor belt. This works great in the vast majority of cases that are what I call 1 to 1 situations, where A-problem needs A-treatment and leads to a “cure.”

    In chronic pain there is no such simple equation where A-problem does not respond to A-treatment and a cure. Chronic pain is like a masquerader and will look like “A” but is really A’-prime-problem. All the “prime” problems can only be addressed off of the conveyor belt and treatments must be personalized.

    Today the AMA, most physicians, State Medical Insurance Boards, State Medical Boards, Medical Specialty Groups and Lobbyists have placed the burden in the pockets of the people who can not afford this out of pocket care. So chronic pain patients get a multiple whammy disrespect; no one listens, no one knows of the treatments, no one seems to care, they can not get work, are not accepted on a job, can not get any assistance, the treatment costs are not included in coverages and the for-profitteers high-tech treatments are bleeding them dry.

    Call your legislators for change.

  11. Stephen S. Rodrigues, MD at 11:39 am

    I’m always listening between the lines and would like to add into the discussion from my clinical experience. Using these tools in the office setting gives the provider an awareness of your role when working under Mother Nature. I’m going to try to clarify the logic inherent in using the CAMs I’ve listed, please, these concepts may be counter to what everyone thinks and believes.

    A new patient brings in reams of notes from many physicians who were not successful with the traditional model. These notes contain dozens (hundreds) of data points in a neat and orderly format as dictated by traditional medicine. The approximate numerical value of those notes is about 100 as compared to the top 10 most miserable concerns of the patient. Those notes were collected and organized with the beliefs, ideas, concepts and conclusions of the people who used a different metric which makes them less valuable.

    So, How does one begin the journey?? Ask the patient! They are sitting right in front of you. Ask them for their side of the story, then ask them for the top 4 complaints and address them immediately. Why? Because we can only handle them in small blocks of about 4 and all are dependant on the patient. Because the data points are not static or always the same like a rock on the ground. These data points are chaotically flinging around in the wind like the leaves on a tree, so the patient is the sole purveyor of what to do next. Their body is where the truth lives, what is wrong and has to direct the journey. As healing is ignited and fueled a lot of the data points will disappear. As the patient’s perceptions change they will perceive the symptoms differently and will direct the provider. With ongoing therapy the healing will transform the patient towards a more normal state.

    Remember in complex chronic pain, the problem is in the muscles and connective tissues so there should be no structural defects that need to be “fixed” … your flesh is being healed as naturally as possible.

    NOTE! The ability of a CAM provider to help you is dependant on how well he/she understands the process and the tools esp the needles. We would be handicapped without the benefits of the needles as per Gunn/Cannon. We would NOT be completely disabled without the needles because we still have our hands and a willingness to help outside the traditional box.

    Traditional medicine is a marvel of science but is incomplete medicine. If isolated from the foundational wisdom of the Heroes/Sheroes, many will suffer in vain. The best place to find a Medical Doctor who has an idea of needles and CAMs is http://www.medicalacupuncture.org/

  12. Dennis Kinch at 10:53 am

    Yes, Dr. Q it does. It is more a concern than a question, though. I have seen it happen a lot where practitioners, both alt and trad, jump in with both feet and don’t take enough time to assess a patient, both their illness and their environs. When I documented the Pain Cycle materials, it all made sense, but I had to figure a way to account for the differences and uniqueness of a patient and so I came up with the Pain Amplifier, which adds in to the graph all of the background of the person, how they grew up, what their home and work life was like before pain and since, what status did they have in the family and social dynamic. People feel pain differently because of these factors. It changed how I placed them on the Pain Cycle which could drastically change how I would approach helping them. It helps to have been a patient myself and having seen a lot of the mix, both alt and trad, good and bad, proper and unethical.
    This is something I wrote in another article but drives the point home of how important the patient is to the whole system and how practitioners, nurses, administrators, everybody, have been seeing the patient in the wrong light most of the time. A slight change in perspective changes everything.

    “There were 2 hospitals that were failing and about to go under, but they were necessary to the local communities. Both brought in troubleshooters to try to turn them around. In one case the person brought in was a nun and in the other case, a retired military officer. Neither one knew about the other. In one year both hospitals were completely turned around and, as it turns out, both outside managers did exactly the same thing. They made the patients customers. That’s right, they decided to view their patients as any service business would, as paying customers.
    They revamped the whole intake process, remodeled the waiting rooms to make them more comfortable, re-trained all staff to get them to see the patients as something like hotel guests. The nun actually took a receptionist and made her like a cruise director. Every patient in-taking was given an orderly trained in helping the patients fill out forms, get to the right waiting rooms, checking on their wait status. They were with them through the whole visit! Both hospitals, by making the patients guests were profitable and well liked by the community – in 1 year! What does this tell you?
    If everyone involved in the medical system, I mean everyone, were to start seeing their patients this way, taking that extra step, looking for those having problems with something, it could turn the profits around in a clinic, but at any rate, it would help people just that little bit, to make their day a little better, like a smile. If doing no harm is the place to begin, patient service, paying a lot of individual attention to the patient, is a close second.”

  13. John Quintner, Physician in Pain Medicine at 6:01 pm

    Dennis, thank you for asking. By virtue of my training and experience as a rheumatologist, I hope that I would have listened to Carol and appropriately investigated her cervical spinal problem. Does this answer your question?

  14. Dennis Kinch at 12:25 pm

    I think all of this is causing me a crisis of consciousness. I had just reached the point of believing, practitioners throw on to the table their best answers for the patient’s problems and let the patient choose which they want to try. Between CAMS and traditional, everyone has some good and powerful things to try and in my 20 years dealing with my own problems medically, I’ve seen a lot of both. To me, getting back to Carol’s article, the patient is the one, the final answer, and should be listened to, really listened to. If this had been done early on Carol could have been spared a lot of problems. The “Do no harm” rule would have worked. I really loved the models I saw of a multidisciplinary clinic where, not only are both CAMS and traditional offered but once a month they all get together and hold “staffing’s”, a discussion of all of their patient’s progress and a roundtable of ideas with the primary pain doc in charge of final decisions. Imagine if this had been done in Carol’s case. Imagine how different her therapies and treatments would have been. What kinds of answers would you and Dr. Stephen have had to try on her. Could other doctors have been helpful?
    I always see this same scenario in my own case. I saw both sides. In Colorado, at the slick, new modern pain and spine clinics who caused me all the massive problems, to seeking out alternative medicines as a last ditch effort to do something to help with the pain, and then to end up at MassGeneral in Boston, where they practiced this model of various practitioners meeting for one patient, not quite as good as the Phoenix one, but groundbreaking nonetheless. They were heavy into traditional methods and PT, and luckily, that was the right mix for me. Traditional meds are my cup o’ tea. Now there’s a statement that immediately becomes a challenge to alternative healers, like I said, “ Your methods suck. I bet you can’t fix me.”
    No one that I talk to ever gets (except once) that I am healed. Maybe not physically, but definitely every other way, which apparently is overriding the physical because I feel healed. The one doc who did get it interrupted his 3 colleagues who were all throwing in their 2 cents on what could help me, and I was trying to be polite, but my mind was thinking, “Man, I wish I had about 3 or 4 pain patients with me, these guys could each take one and help them!”
    The 4th doctor jumped in and said,”Can’t you see, he’s done with this! Look at him. He’s at peace now, probably for the first time in years! He doesn’t need help and he’s probably sick of talking about it!” Oh so right! I wanted to hug him so bad, and then hide behind him! Some pretty important points here but they all come back to the patient, don’t they? I hope every practitioner out there uses Carol as an example every time they meet a new patient. LISTEN! Look and listen. What are they saying with their mind, body, emotions and spirit? Listen. Maybe the answer can be solved quickly, like in Carol’s case with an MRI and some caring, or in my case, by just walking away!

  15. BL at 10:46 am

    We need to get in the habit of getting copies of all of our medical records on a regular basis. Our drs don’t always write down what we tell them or what they tell us. And someties when they write it down, it is written down incorrectly. Our drs also don’t always tell us everything. The only way we can be sure of exactly what is contained in our medical records is to get copies and read them.

  16. Stephen S. Rodrigues, MD at 8:49 am

    Here is a (short) list of the authors of past and present who are the primary source for complex pain problems. I’m not wedded to one author because they ALL are full of not just words but if you read between the lines you get a sense for what’s in there thoughts. The profound power is in the combination of all the ideas. All have a slight deficiency, but in combination, they all compensate for the other.

    The beauty of all these protocols is that they are inexpensive, safe, effective, nontoxic, can do no harm, some can even be done by the patients themselves or a family member. The home care and family support idea, was a profound eureka moment when a patient asked if I would show her the needles, I asked, why? She got the idea off the web and it would save her 3 hours of driving time.

    1. Gunn Approach to the Treatment of Chronic Pain: Intramuscular Stimulation for Myofascial Pain of Radiculopathic by C. Chan Gunn MD.
    2. Travell & Simons’ Myofascial Pain and Dysfunction: The Trigger Point Manual David G. Simons , Janet G. Travell, MDs.
    3. Myofascial Pain and Fibromyalgia: Trigger Point Management
    Edward S. Rachlin MD.
    4. Ligament and Tendon Relaxation (Prolotherapy) by George S. Hackett, MD.
    5. Pain Procedures in Clinical Practice, Ted A. Lennard MD, David G Vivian MM BS FAFMM, Stevan DOW Walkowski and Aneesh K. Singla MD MPH.
    6. Backache from Occiput to Coccyx 1964 by Gerald L. Burke.
    7. Intraneural Injections for Rheumatoid Arthritis and Osteoarthritis & Control of Pain in Arthritis of the Knee by DiFabio and Pybus.
    8. Healing through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction by Devin J. Starlanyl, John Sharkey and Amanda Williams.
    9. Myofascial Pain and Fibromyalgia Syndromes: A Clinical Guide to Diagnosis and Management, 1e by Peter E. Baldry MB FRCP.
    Plus
    The Subluxation Specific, The Adjustment Specific: B.J. Palmer.
    The Chiropractor by D. D. Palmer.
    CraigPENS as per William F Craig, M.D.
    Myofascial Release by Gokavi, Cynthia N. Gokavi, MBBS.
    Fibromyalgia and Chronic Myofascial Pain: Devin J. Starlanyl and Mary Ellen Copeland.
    Advanced Soft Tissue Techniques as per Leon Chaitow, ND, DO.
    Medical Acupuncture as per French Energetic protocols of Joseph Helms, MD.
    Mindfulness meditations by Jon Kabat-Zinn.

  17. John Quintner, Physician in Pain Medicine at 7:46 pm

    Dennis, I am sure that when my colleague Dr Rodrigues has built up a cult following, it will resemble that of tarantism, which dates from the 10th century or earlier and appeared at intervals during the Middle Ages. The last known epidemic occurred during the 14th century in Germany and the Netherlands. Instead of allegedly following the bite of a venomous spider, the tarantula, the modern day version could well follow a spell of dancing with Dr Rodrigues’ esteemed colleague, old Mother Nature. The ancient version was said to be cured by music of a lively and impassioned nature, the Tarentellas, some of which have been preserved. That which follows a dance with Mother Nature still awaits a remedy.

    I know this has nothing to do with Carol’s post but Dr Rodrigues has an alarming habit of injecting his nonsensical and self-promoting comments into the conversation. He seems to have morphed from a trigger point enthusiast into a self-appointed advocate for the CAM movement. With such a staunch friend the movement does not need any detractors.

  18. Dennis Kinch at 3:42 pm

    @Stephen S. Rodrigues, MD
    Hey doc, Can you tell me what you mean by…” My authors, the Heroes/Sheroe…”?
    I really believe that I have left everything to the trust of Mother nature and She has responded by healing my body 90% and my spirit 100%. Now I live in Her trust and comfort, as uncomfortable as this might be and She covers me with smooth waves of ups and downs.

    I thank this site for allowing the dialogue and especially you and Dr. Quintner. You two always present the 2 sides well. The other day I learned a lot about magnesium and it’s place in the balance of things. Education is such a key part of the fight against pain and this site brings a lot to the table. Thank you all.

  19. Stephen S. Rodrigues, MD at 12:12 pm

    @Quintner
    Powerful Quotes! I will let my “Quote Mister” know of those. He’s compiled thousands, I will share his collection with you via an email. He’s also a genius and did it as a hobby. I would share the file here but I would have to get his permission. Those philosophers are directing their admonitions to you and I as observers. Our beliefs will taint the history and I’m very careful not to allow this to happen.

    You touched on the defining “point” (excuse the pun) about Truth. One can only find a patient’s (Truth) pain by asking them. The “flesh and blood” person is the only place to find their truth. A scan or MRI can not tell you this intimate and personal data. Even if technology could analyse this data, I would not trust it over what and how the patient expresses the complaints. I have been fooled countless times by high technology of the human body, it is fraught with many inherent errors. I still order and used them, but the “eyeball to eyeball” encounter is the most valuable.

    Traditional MDs with CAM experiences are more aware of these communication obstacles. Through experience we learn to follow along with the patient’s directions as a personal partner. We’ve learned by the “school of hard knocks” not to take control or get in the way of the healing process. Mother Nature is alway there to guide, direct and make corrections. “It is not nice to fool Mother Nature.”

    To clarify my last few notes:
    Level 4 and 5 therapy is very intensive and absolutely necessary in my view. This is why I’m advocating that CAMs be implemented in the beginning of a pain syndrome before it grows and spread.

    My goal is apply 100% time, effort and reasoning. If that yields 50% or 100% improvement, then that is all Mother Nature has to offer. Complete elimination of pain depends on many factors, known and unknown, we should not allow what is known hold us back. We should not allow the number of visits to get in the way, whether that is 6 visits to 100% or 30 visits to 100% or 60 visits to 50%. I have patients who have broken the 125 visits over 5yr mark.

  20. John Quintner, Physician in Pain Medicine at 4:31 pm

    @ Dr Rodrigues. In the words of William J. Mayo [1861-1939]: Scientific truth which I formerly thought of as fixed, as though it could be weighed and measured, is changeable. Add a fact, change the outlook, and you have a new truth. Truth is a constant variable. We seek it, we find it, our viewpoint changes, and the truth changes to meet it.

    Thomas Huxley [1825-1895] reminds us that “Irrationally held truths may be more harmful than reasoned errors.” I would therefore place your “Truth Medicine” in the former category.

    Finally, Huxley also observed that “It is the customary fate of new truths to begin as heresies and to end as superstitions.”

  21. Stephen S. Rodrigues, MD at 10:29 am

    @ Dennis
    My authors, the Heroes/Sheroe found ALL the answers we needed (repeat, ALL the answers needed) to restore a person back to a healthier state of wellbeing. They discovered these ideas without technology, invasive surgery and without a lot of pills.

    All the answers means;
    What to do about this type of pain?
    How to address and treat this type of pain?
    What not to do about this type of pain?

    Having a Medical Degree allows one to understand what is dangerous. Know the limits allows a freedom to do the necessary work. With the protocols set forth by my author’s, you are dancing with Mother Nature and if you keep alert and respect what the patient feels, it’s entirely “safe.”
    If you are aware of ALL of their warnings and precautions, you should not do any harm. In actuality, if you use some of your own beliefs in the practice, your outcomes will fall short.

    Since this is as close to nature as possible and nature heals all, I tell patients that 100% restored is the goal. Why? A lesser goal would be unfair, short sighted and unfaithful to Mother Nature.
    Remember! Try to control the dance, play God or be a know it all, Mother Nature will punch you in the nose! I still get punched from time to time, Mother Nature keeps it real.

  22. Gaiamom at 10:00 am

    Thanks so much for this blog post. It comes on the heals of an appointment with my pain Doctor in which I was told that my current pain pump medication side-effects (urinary) were “perceived side-effects,” essentially they only existed in my head. I then saw a urinary specialist who validated my side-effects and demanded removal of the pain pump medication to avoid permanent damage. Not only is my pain Doctor not hearing me, he is either uneducated about the medications he is prescribing or lying to my face. This sort of stress only manages to make my disease worse.

  23. Stephen S. Rodrigues, MD at 7:13 am

    @Quinter
    Placebo and Truth.‏

    In the clinical setting some use a binding force for which “placebo” becomes irrelevant which is the truth.

    In Truth Medicine, with the old school philosophies, the provider and patient form an alliance, bound by an oath, so that the concept of deception, false beliefs, or the placebo effect does not apply. The patient must delve deeply into their feelings where truth lives. The provider has to accept those feelings as presented without judgment or bias.

    A foreign concept to some science researchers and medical personnel who use an impersonal metric.

  24. Dennis Kinch at 5:07 am

    As we know from experience and the point of my comments, “Where’s the feds?” If it’s in their hands, then we are screwed. Obamacare, believe it or not, is the first sign of patient coverage and protection in 35 years.

    Besides the obvious 20 million uninsured needing care the Bill takes care of are the patient protections, a sort of mini-patient bill of rights included in Obamacare. Makes you wonder how good it would have been if it had passed Congress the first time, before all the good stuff was taken out.

    The other point – with so many numbers, why aren’t we, the millions of chronic pain patients being covered? The federal watchdog agencies would rather go after the small numbers than tackle the larger problem. Someday we will be socialist, there’s no way around it, but for now, we could learn a lot from the socialist countries. What they have found out – when everyone is medically covered, taken care of, and after about 20 years, the incidence of major illness is way down. You can then start working on preventative medicine and true well-being. They are covering alternative medicines a lot more now. This is when CAMs really shine – in prevention. Just some food for thought.

  25. John Quintner at 6:02 pm

    Dennis, In this case “your” refers to the USA. The findings and recommendations contained in the Institute of Medicine report were referred to the US Department of Health and Human Services. This is as much as I know but if you read the report you will see that your legitimate concerns were recognized and addressed. The ball is now fairly and squarely in the court of your government.

  26. Dennis Kinch at 4:54 pm

    @ Brenda, I feel exactly the same way. I’m not suicidal, couldn’t be if I wanted to, so sometimes I feel like I’m stuck here. Thank God for the wealth of things out there to try, in case something were to work or at least, helping to lessen pain. Both traditional and alternative have helped a lot, although it took a couple of years to find the right mix, but when I did, and when I finally convinced my docs to prescribe the same all the time, every month, for years now, it helped a lot. Hang in there girl, like one doc told me, “there’s always spontaneous remission to hope for.” (true thing)

    In the vein of East meets West medicine I found this online. Check it out: Headline: from 2005

    Dalai Lama, top scientists to discuss science & clinical applications of meditation !

    Conference addresses western medicine & society’s embrace of meditation, press meeting with Dalai Lama, Hopkins Medical Dean Edward Miller, and Georgetown University Professor Aviad Haramati at 8am on Nov. 8

    WASHINGTON, DC – With Western medicine’s increasing interest in meditation’s affect on mental and physical well-being, the Mind & Life Institute, in partnership with the Georgetown University Medical Center, and the Johns Hopkins University School of Medicine will host “Mind & Life XIII: The Science and Clinical Applications of Meditation,” November 8-10, 2005 at DAR Constitution Hall in Washington, DC. The historic conference on meditation, a convergence of Eastern and Western thinkers, will feature acclaimed speakers from scientific and contemplative communities, among them, His Holiness the Dalai Lama. A pre-event press meeting with the Dalai Lama, Johns Hopkins Medical Dean Edward Miller, and Georgetown University Professor Aviad Haramati will be held 8:00 – 9:00 am on Tuesday, November 8 on the “C” Street lobby level of DAR Constitution Hall.

    Pretty cool, huh?

  27. Dennis Kinch at 4:13 pm

    Addressing S Rodrigues’ statement: Wow! You told the truth here, and you know how you can tell? Because the truth is usually not flattering to us. It can make us look less than good, or right. But it’s so true. CAM providers need to first, I mean FIRST!, assess the patient. Intake the patient. Find out all you can about them and their physical nature and condition.

    I have fractures all along my spine. I test all providers by asking about hard massage, like ROLF. I ask if they would be able to do the massage and if it would help. Their first statement should be, “Probably not if you have fractures. I would need to know a lot more before I even touch you. I could hurt you.”
    Out of about 10 practitioners, traditional and CAM alike, only 1, a chiro, said this. Everyone else was willing to do the hard massage (for a price) and never asked further about the spinal bone fractures. This should say it all.

    But another serious problem is the idea of “The technique you believe in can fix everybody!” Wrong! Everybody’s unique and different.Some of the best success stories report 35-40% helping people. There’s a lot of reasons for this but it IS a cold, hard fact. If you’re doing better than 50% success, something’s wrong with your numbers. (usually)

    The goal in healing is that we all offer our practice, whatever it is, and allow patients to seek us out. The more there is out there, the better we all can help – patients and each other. We then try to provide better and better service so as to get closer to the 50% figure.

    The future of pain clinics is to have all types of healing avail to the primary doc so he refers a patient to what the patient needs. I saw this in action (very rare though) and it is so cool. I spoke at a Fybro class. The woman before me was teaching a nutrition class. There were pain counselors, acupuncturists, etc, and a lot of traditional medicine specialists. Those that weren’t in the bldg were nearby, on purpose.

    You can see why this is the future. It works. It offers patients many paths to healing and requires the primary docs to “know” their patients well. So CAM and traditionals alike, let’s all shoot for our 50% and be available for the patients that need us…and drop the “I can fix everybody” attitude. You just can’t.

  28. Dennis Kinch at 4:21 am

    Dr. Q- when you say “your own”, do you mean -“for the patient? or for the AMA? or for pain docs?” The Institute of Medicine,(the Academy of Sciences), is about half doctors and half medical professors. They claim to be non-biased, but c’mon. Who do you think they represent?

    I’m thinking more like, the ADA, the ACLU, CBS News, the AMA, or even the DEA? Who do they represent? The numbers are incredibly lop-sided!

    Apparently these groups missed all the stories I hear of the public being mistreated by the medical system, over and over and over again. I warn people that “if you got a good job, good insurance, or a good lawyer, don’t for one second believe that you’re safe from going under due to a medical problem…a legitimate medical problem that you had nothing to do with it happening.” I was completely covered, and lost it all.

    I became an advocate 10 years ago after my own 4 year trial by fire and listened to story after story by people on the streets, most of them war vets, all of us homeless.
    It happening to the veterans bothered me more than it happening to me! When the gov’t declared their War on Drugs, now officially a failure, why didn’t they declare a War on Medical Bankruptcy? (The only country in the world with this problem, BTW)

    How could everybody miss it then, and still be missing it now? How can the numbers be so skewed, thousands vs. 10’s of MILLIONS, yet we go after the thousands? And no one’s catching it? Not the groups, not the feds, not the law, not the press? Like the Warren Commission…how did they miss it?

  29. Brenda Alice at 5:45 pm

    Thank you for sharing the discrimination that patients with pain face. Appreciate Dr. Rodriguez’s comments. Pray all can find compassionate care and pharmacies to fill their prescriptions. I know what it is like to suffer daily even with pain medication. I pray to die before the politicians decide to arrest the patients instead of the criminal. At this rate it won’t be long unfortunately. The link for petition on change.org ishttp://petitions.moveon.org/sign/dea-vs-chrontic-pain.fb48?source=c.fb.ty&r_by=5225671

  30. John Quintner, Physician in Pain Medicine at 1:27 am

    @ Carol and Dennis. Are you aware that in 2011 your own Institute of Medicine of the National Academies published “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research”? I suggest that the future of Pain Medicine in the USA will depend upon its successful implementation.

    @ Dr Rodrigues. For the record, the “holistic old school medicine of the past” has never existed, let alone in the 1980s. Heat, rubs, liniments, massage, traction, contraptions and some injections were certainly in use at the time but their therapeutic benefit was limited. The sole “truth” that became apparent was the contextual (placebo) effect.

  31. Stephen S. Rodrigues, MD at 5:16 pm

    @Mark S. B. says:“I did everything doctors wanted me to from Acupuncture to Botox injections.”

    I would like to address these failures in therapy. Vital data from a CAM provider:
    Acupuncture is not all the same, like comparing a car to a 4 wheel truck. People and even some Acupuncturist only see the “car” and will not venture off road thru the muck. Gee, the tools and ideology of this therapy will also limit its effectiveness.

    Pain can grow in size + density, can spread and seed local areas and metastasis up or down the spine. In this sense, the pain acts like a cancer and sometimes I refer to it as a “Pain Cancer.” Just like a cancer this “Pain Cancer” will evolve into 5 stages and will not respond well to weak and imprecise therapy. It is important to know which stage a patient is in, so you will understand if a higher intensity of therapy is needed. The only persons who can tell you if the therapy is effective are the patients who have the pain. So in a one on one session with a CAM provider the sources of the pain are uncovered and treated.

    This is a list, in increasing order, of the density of pain and the intensity + invasiveness of the CAMs needed for the treatment to be effective;
    0 => No treatment except Wellness and Balance.
    1 => Massage, Active Tissues Release, yoga etc.
    2 => Chiropractors and Acupuncture (who know pain points and muscle release).
    3 => Myofascial Acupuncture, GunnIMS plus all of 1-2.
    4 => 1-3 plus Travell/Simons injections, wet/dry needling etc.
    5 => Rachlin-Gunn-T/S IMS with hypodermics plus 1-3.

    Botox, Biopuncture, Glucose and Neural injections are Traditional Medicine concept that is less effective that the above due spending less time, effort and points used. The provider chooses theses points whereas in the above CAMs the patient is the only person who can tell the provider where to apply the therapy.

  32. C.M. Phillips at 3:33 pm

    Dennis Kinch, I definitely hear you! We are the majority, yet we are treated as though our opinions, our concerns and our pain do not matter. We are being effectively silenced by those who know nothing of our plight. Those who have no real understanding of our day to day struggles, are the same people who are lobbying for more restrictions on our treatment. All this suffering, all this abuse, so that a few drug abusers don’t get ahold of our medicine?

    I was personally hoping that chronic pain sufferers were going to be able to create the change needed to get better care. The reality is a “paradigm shift” did happen and that means less treatment for all who truly need it.

    Apparently our concerns don’t count in the face of the newest wave of “opioid hysteria.” I fear if patients do not start to rise up against this “drug epidemic” propaganda, we will be lead into a time of severe oppression and suffering, the likes we have yet to see. More restrictions always create more suicide rates, more abuse and addiction rates and more overdoses, yet those who are “in-charge” still believe this is the right course of action? We are in a lot of trouble. If we don’t put a stop to this new anti-opioid shift, many will inevitably die.

  33. Mark S. B. at 8:11 am

    I’m happy for you that you received the correct surgery for your pain. I have a similar neck problem from a roll over car accident , when the roof collapsed in compressed my cervical spine, I was 28 years old. Over the years it developed in to a degenerative disc disease with severe chronic pain. Its been 16 years I’ve dealt with chronic pain that’s driving me to the end of my sanity. I’ve been to 7 different Pain Specialist over the years and had all the epidural injections that did my pain no good.
    I did everything doctors wanted me to from Acupuncture to Botox injections, you name it I tried it, surgery is not a option for me because its spread throughout my cervical spine and in to my thoracic spine. The problem is the disc in my cervical spine have lost the outer portion or annulus fibrosus and they have weakened causing a gel-like inner substance called the nucleus pulposus to leak out. The water attracting molecules in my discs decrease, making discs become more stiff and rigid . That’s when bone spurs or osteophytes have formed as my body attempts to repair itself.

    Now I’m being told Pain Specialist have had a paradigm shift in thinking about how to treat chronic pain. A paradigm shift is a radical change in underlying beliefs or theory.
    The old way of thinking how to treat chronic pain was wrong and doctors have been prescribing wrong, this is not their fault because not many doctors where taught how to treat chronic pain in medical school. The titration of medication as your body becomes tolerant requiring a increase in dose to achieve the same pain relief is not the correct way of treated chronic pain anymore. Even though I found a long lasting medication that I never needed a increase in to achieve the same pain relief I’m now being titrated downward and off the very medications that gave me a somewhat normal type life. I must adhere to this new type thinking about how to treat chronic pain or I will be left without medical care all together. I’m finding that indeed as I titrate downward and my body adjust the pain is still the same. No increase in pain but the same amount of pain.
    I will be 58 this month and I have no more fight in me, I’m not about to go out and search for yet another doctor. I will continue on titrated downward and see where this takes me.
    If my chronic pain is still the same then I’ve lost nothing but being taken off these medications. If my pain gets worse then I must endure. If my pain lessens then it will be worth the time and effort.

  34. stephanie at 5:36 am

    You do not say when all this happened. but I have a similar story with a neurosurgeon saying ‘your neck is no worse than anyone else your age’. yet almost 20 years earlier and osteopath had said I had the neck of an 80 year old!

    To cut a long story short, armed with the MRI scans I was sent from one specialist to another all of whom( except the neurosurgeon) said my pain was due to my neck. In the end I found a clinic in Germany where they did replacement discs in necks. I had the operation and have full function. BUT I would still be in great pain and disabled if I had listened to that neurosurgeon. We have to be expert patients today!

  35. Dennis Kinch at 1:03 pm

    It’s hard to believe, that there is so much fuss over issues like people overdosing from opioids, (4% including streets addicts), or prescription fraud (1% including doctors), or people faking diseases to get pain meds (less than 1%); yet not a damn thing is ever brought up about medical professional neglect, mistreatment, missed diagnoses, malpractice, lying, cheating, siding in with insurance companies and employers, all illegal. Every single story I’ve ever heard from someone suffering with a pain disease has the same setups and outcomes with only the names of doctors or insurers or diseases changed.

    Being mistreated by the medical system has, to my knowledge, never been surveyed or studied, but, given the 100 million people with pain diseases in the US and, given the fact that I’ve never met one with a good, smooth story of how well they were treated and how quickly they were diagnosed and how great the treatments were in reducing their pain, never, not one, I would have to assume, it’s a huge, huge problem.

    Far bigger problem than any of the studies or laws designed to blame the legit patient. I’ve literally talked to hundreds personally, including many veterans of the last 4 wars and it’s always the same…horrendous, mind numbing, face cringing stories of how badly they had been mistreated by clinics and hospitals and the VA.

    When I went on the road to “round up” veterans, I thought my story was pretty bad,until I realized that everyone’s story was equal, or worse than mine! OMG! OMG! Whaaaaat!

    Yes, worse than mine. Where are the groups and the researchers and the whistle blowers? Where are the feds, the FDA, the DEA, the AMA? Who is gonna stop this madness if they don’t? Why are they so busy studying and bringing down the minute percentage of lawbreakers and misusers, yet have no time for us? We are being , not mistreated, but Abused! Yet where are the agencies? Where’s the 2 politicians that started the whole “opioid danger” scam that ended up blaming and hurting the legitimate patient? They had enough time and means to create such a stir that a state Governor made a law that was against the law, all because they had him so scared of the ensuing “epidemic!”

    Turns out it was 12,000 nationwide. 12 thousand! They did all that for a percent of a percent of a percent! Can’t we get those 2 politicians – 10 DEA agents – 5 newspapers and the AMA to do a study and change some laws, this time to help the 100 MILLION of us? How does this work exactly?

    Either we all need to sign up on one site, or we sign up on every pain site we see, but we must do something. I believe that most pain websites are ready to take action if only they had the numbers And how hard is it to sign up on a website? This is why I am on every site I can find.

    C’mon, everyone, start signing up in every pain treatment website you come across. If they claim t help us, investigate them as much as you can to be sure they are on our side, and sign up. There’s 100 million of us out there? Almost all of us are being abused by the system, yet the grubby pain drug abusers get all the attention. Stand up, Sign up! It’s not that hard. (Do I sound frustrated?)

  36. Stephen S. Rodrigues, MD at 10:44 am

    As a Medical Doctor, I’m ashamed and regretful that in 2014, patients still have to suffer in this manner. These accounts of the failures in modern medicine are all too common and all the causative associated issues must be addressed.

    50 years ago some providers realized that technology was less effective and efficient at treating some types of pain problems. This type of pain could not be treated like you would treat cancer, a broken bone, tumors or infection pain. The most notable of these providers are: Travell/Simons, Hackett, Rachlin, Gunn, Pybus, Gokavi, Chaitow, Baldry, Wyburn-Mason, and Lennard. These MDs had to rely on what was already known at the time to be of benefit. Most of the ideas and concepts were used from antiquity to treat these pain syndromes. Heat, rubs, liniments, massage, traction, contraptions and some injections. Through trials and errors they all found a truth in what they were doing because the results were witness first hand by the patients.

    Then in the 80’s medicine diverged into 2 completing groups, “Traditional Modern Science Based Medicine” and “Complementary and Alternative Medicine.” This is went patients and providers began to experience a deterioration of clinical outcomes in the areas of pain, dysfunctions and malfunctions. Most of the authors, writers, readers and editors have experienced this situation first hand with continued pain and misery from this Science Based arm of Medicine.

    The problem with SBM traditional medicine is that some problems the human body suffer from can not be seen with technology and should not be treated with SBM pills and surgical repairs. In actuality SBM will lead some down the wrong paths and delay the proper therapy further causing pain and suffering. If these patients are fortunate enough to find a reliable CAM provider they will see improvements in less pain, better mobility, less pills, less high tech surgeries, better sleep and an overall better quality of life.
    Here are a few CAM clinical pearls:
    Chronic pain is in the flesh and muscles.
    Pain can not be seen with imaging.
    Whatever is seen on imaging is secondary or tertiary, only a clue.
    Pain is not where you or the patient’s think it may be.
    Chronic pain can spread and actually become worse.
    Chronic pain can lead to degeneration of joints, muscles, vertebrae imbalance, falls, nerve entrapment of the head neck and face, arms, wrist, feet and ALL are secondary.
    Chronic pain rarely emanates from the joint proper, cartilage, meniscus or disc.
    Chronic pain “the primary disease”should be treated with ongoing (possibly) life long therapy.

    For the future of medicine to be more patient friendly and cost effect the two arms of medicine must converge back into a whole unit, the holistic old school medicine of the past. ONLY them, in my opinion, can modern medicine progress and survive into the future.