15 Years with My Pain Dr. and My Last Appointment Became My Final Appointment

15 Years with My Pain Dr. and My Last Appointment Became My Final Appointment

by John J. Sandherr


John Sandherr and his wife Deb

Editor’s Note: John Sandherr is a 58-year old man who lives near Pittsburgh, Pa. He has suffered from chronic pain for thirty years and has undergone 10 surgeries. . He is an arachnoiditis survivor and is an outspoken chronic pain advocate. He credits his wife Deb for helping him survive the past thirty years. We’re glad he has added his voice to the National Pain Report.

On August 8th just over 2 months ago I went to my monthly visit to see my Pain doctor. It was like any other appointment that I’ve had for over 15 years. Every 28 days I would go in to get my pain medication and get a short but thorough exam from the Dr. or by his Physician Assistant. Each month was routine for me because of all the documentation that supports the severe pain I suffer with.

There was nothing routine about my visit on that day – as soon as I walked in I was told by the receptionist, “Today is your last visit, I need you to sign this paper and you will be given your medical records. As of August 12th Dr. Frank will no longer treat pain patients, you need to find a doctor and fast.” I must have looked like I was hit by a truck and then a train because the girl said, “are you OK?” and I said, “NO, will you be giving me the name of a doctor that I can follow up with?” “NO” was all she said.

I took a seat and completed the forms I was given and returned them to the girl, she then handed me a large yellow envelope that had 186 pages of office notes that went back 6 years. I didn’t ask but I assumed that 6 years is the required amount of time to conform to the guidelines.

After I went back to my chair I was lost and broken and as I sit and write this all of those feelings come rushing back, my mind is blank but racing, my breathing is slow and then fast, my heart is pounding so fast I can actually hear it. I remember – three cleansing breaths – i can quiet my racing heart but for just a few minutes.

After a 10 to 15 minute wait Dr. Shani called my name, she could hardly look me in the eyes. I sat across from her in the same chair I always have but there must have been a look of desperation mixed with fear etched into my face as Dr. Shani said to me, “John you look terrible” and I came right back with, “I can’t believe this is happening.” She didn’t know what to say while I sat there with tears that started rolling off my lower jaw. “I’m scared to death” I said, “and I don’t know what I’m going to do, no doctor is going to prescribe what I’ve been taking for the last 10 years. I’m done.” She couldn’t disagree and I knew it.

Dr. Shani spent the next 10 minutes giving me a pep talk – I gave her credit for trying and for caring. I had regained what composure I had left and asked Dr. Shani “why is Dr. Frank closing the pain clinic”? The answer came with no hesitation as Dr. Shani looked me right in the eye and uttered “he wants to spend more time in the Operating Room and more time at the Addiction Clinic he opened last year”. That statement left me thinking, I know Dr. Frank is a workaholic, he has fewer pain patients but that was due to those that got booted for failing a drug test or requesting more medication much too early. I was Dr. Frank’s oldest or longest patient, no one else had 15 years of treatment at the clinic, just me.

Glued to the chair, I knew getting up meant never coming back. This wasn’t easy, just 6 months prior I had asked Dr. Shani if the anti-opiate campaign was something I should worry about, was Dr. Frank going to close his doors someday soon. Shani told me not to worry and that Dr. Frank was a well established Dr. in the field of pain management and the patients had nothing to worry about, I needed to hear that. It seems that no one could foresee all that would happen over those next 6 months and I felt like I should have been ready for it, I read about this situation while on The National Pain Report and I never thought it would happen to me.

With nothing left to do and thinking about what was next, I had but one last thing to ask Shani, “can you please give me the name of a Dr. I can call, a Dr. that might be able to prescribe anywhere near the dose I’m on and have been on for over 10 years,” Shani said, “I can’t do that John” so I said, ”Okay, how about off the record?” She wrote down three names on a small piece of paper she had ripped off her calendar and slid it across the table to me. I asked if these Dr’s would be comfortable keeping me on my current dose and I already knew the answer to that question (I’m on over 350 mg of OxyContin & OxyCodone, daily) – “No, you will need to wean yourself down over the next 60 to 70 days, as much as you can – you can do it John”, that was her reply.

Shani slid the prescriptions across the table and said – Good luck. I looked over the medication, everything was there. Fifteen years of what I believed to be good successful years had come down to 12 sheets of paper and little hope.

Medication, I now had enough to get me through the rest of the year, if I cut back starting the next day, plus it gave me more time to look for and find a Dr. to treat me.

I just couldn’t walk out of that office without making some kind of a statement. I walked over to Shani and first gave her a big hug for taking such good care of me for so many years and then with my hands on her shoulders I looked at her and said “I can reduce the medication and I will do my best, but no matter what, I’m still going to end up in the Hospital and it won’t be for a short stay. It’s not the reduction of the medicine that worries me, it’s all that pain that will only get worse  and that’s what worries me the most, I’m afraid I won’t be able to take the pain.” Shani, a short thin woman from India looked up at me with sad eyes and said, “I know John and I’m sure you will.” That reply left me feeling extremely helpless and fearful but it’s that kind of attitude that won’t do me a lick of good.

Out the door I went and as I got into my car I kept thinking – my pain is real, I’m not a drug addict, there is little hope of finding a Dr. to treat me, my condition is progressive, I’ve tried nearly every pain modality medicine has to offer and the one thing that allows me to be a productive member of society and ease my suffering is Opiate Pain Medication. Every day I read a news article that says a vast number of Americans believe that there is no place for opiates to treat any kind of pain. Now I hear that many are calling for a complete ban on opiates and I wonder if those people have ever had the need for a pain medication. If opiates are banned, what will people use in their place? I’m not sure if they have given that any thought and they won’t until they are in severe pain.

Fifteen years is a long time, so, Dr. Frank became very familiar with my medical issues and my personal issues, he once asked me, “how can you even walk when according to these test results you should be in unbearable pain and I can see that on your face and when you squirm in that chair yet you always seem to have a smile on your face.” I would say, well I can smile or I can cry but I know I’m better off than the patient I just saw in the waiting room, sitting in a wheel chair with no feeling from the waist down and still in pain. There will always be a person that is worse off than me and that keeps me going.

Less than a week later I was at my surgeon’s office for a follow up visit with Dr. K an Orthopedic specialist I’ve been seeing for over 12 years. I’d developed drop foot in my right foot; the left foot went about 4 year prior. After only a few minutes Dr. K came walking through the door. He said, “John Sandherr, man are you screwed.” He said, “I spoke to Dr. Frank the other day and he told me he was closing his pain clinic.” He told me the DEA was making it almost impossible to treat pain patients with Opiates so he’s going to stick with his addiction clinic. “What are you going to do,” he asked me. “I know what you’re taking and it’s a big dose, but you need it John.” He said, “I could operate on you and you might feel better for a few months, but after that you will be worse off because of all that scar tissue you have from the other 10 operations you’ve had…or is it eleven. I feel for you brother, If ever there was a patient that needs to use pain medicine it’s you.” Dr. K went on to tell me about a good friend of his that had a run in with the DEA over a single prescription he had written for a patient, the standard 7 day supply of Percocet following knee surgery. He was told that some of the pills wound up in the hands of someone other than the patient and for that reason he is now under investigation.

I hold no grudge against Dr. Frank for closing the Pain Clinic and I know it was not a choice he made purely for money. What angers me is we now have a government telling Dr’s what they can or cannot prescribe for a patient that has not demonstrated any sign of drug addiction. People that are in pain and depend on opiates for relief deserve to be treated with what helps them the most. Just a week after my last visit the Governor of Pennsylvania signed a new bill that will almost force Dr’s to comply with when prescribing opiates. With that and the new “Monitoring System” the state just put in place, Dr’s now have a difficult and time consuming job and what they really want to do is help those in pain.

When I found out that – Bain Capital a Hedge Fund company – are investing in substance abuse for profit it all made sense. I was working in the Mortgage Industry when the housing market collapsed; there were Hedge Funds for investing in housing failure. Many became multi-millionaires overnight.

It was Dr. Isben that said “follow the money” and I’ve started to do that. The money is invested heavily on addiction, not helping people in pain. Can we convince enough of the right people that the real facts have not been revealed?

John Sandherr is a 58-year old man who lives near Pittsburgh, Pa. He has suffered from chronic pain for thirty years and has undergone 10 surgeries. He is an arachnoiditis survivor and is an outspoken chronic pain advocate. He credits his wife Deb for helping him survive the past thirty years. We’re glad he has added his voice to the National Pain Report.

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Authored by: John J. Sandherr

There are 98 comments for this article
  1. Tim Mason at 7:37 pm

    There are several contradictions for SCS implantation.
    1. If there is a possibility you will need a hip replacement in the future.
    2. They really only work well for leg pain. Not for low back pain.
    3. If you have a spinal pathology and may need future MRI you will not be able to get one. Supposedly there is a model out there that works but a specialist from the manufacture has to be there when your MRI is done. (I got this info from a person that runs a 3-Tesla Magnet.
    4. The # 1 reason for explant is INFECTION. the # 2 reason for explant is that the implanted device does not provide relief like the implanted device.
    5. You can not have the unit on while driving
    6 Overstimulation is experienced when leaving a shopping mall when you walk between the antithieft device at the doors of the mall.
    7. If you work around any electronic equipment that generated a RF signal (Radio Frequency) you will experience over stimulation.
    8. If you are prone to scar tissue formation, 2 out of 500 people are, I am one of them. The implanted leads could a source of pain themselves.
    For a full list of complaints and the number of complaints visit the FDA website. search medical device recalls- your item will be spinal cord stimulators. You can also search by manufacturer as well.
    In my opinion the SCS is a method of last resort.
    I posted a link to this in a similar thread on this blog. the SCS is a business model with expected revenues of 14 billion dollars by 2020. Promotion of these thru pain management clinics is aggressive and to defend their use at all costs.
    There may come a day when I will beg for one of these but when my “treatment is working or I have “wiggle room” still left in my dosage I have passed on these,

  2. Tim Mason at 5:28 pm

    Chris, I believe this would fall under “Elder Abuse”. You are the same age as I am. The only people that see you are those your age or older. No empathy. It’s all about me and nothing about you type of society.
    Start looking around for another pain specialist, perhaps one that is on the Pain Board in your state.
    If you have a state funded hospital near you they should have an associated physical rehabilitation facility. Look them up. Call them. Tell them you want to talk about your illness. Don’t go into any details over the phone until you see them and can see the whites of their eyes.
    There is help out there, you just need a map.

  3. William P Isham at 11:54 am

    I trust all of you have taken the Chronic Pain Survey, found here.


    This is being conducted by researchers who are concerned about people like us, that is, those the CDC guidelines are leaving behind.

    please, Please, PLEASE take the time — about 10 minutes — to do this, for all of our sakes.


  4. Jean Price at 6:27 pm

    Carla…great advice regarding having a trial for a spinal stimulator! I once had a doctor I really respected tell me no doctor should recommend to just go right to the implant, but rather give the patient a trial period. He further said if you can’t DEFINITELY say you were better with it…at least 50% improved during the trial (which he suggested be about three days to a week)…then it is likely not going to be of long term help. He said if you have to think about whether it’s helping…then, it’s not! (I’ve always thought that was a good gauge of any treatment efficacy!) And…Just FYI on a different treatment option…He also said if you have hardware, like rods and screws or plates in your spine, then radioablation is contraindicated…if the area to be treated is in the near vicinity of the metal…because the radio waves heat up metal and can cause more damage. I know some doctors will do this procedure on patients with metal implants, yet the success rate may not be good for a reason.

  5. Carla Cheshire at 5:47 pm

    Kathy Malles-overcast Do not get the SCS unless they allow you to do a trial. You can try it out for a few days before they implant one. I wonder if physicians get some sort of compensation for referrals of patients for these. I had one many years ago. Initially, I thought it helped some but in time it just didn’t relieve pain. I had it removed. It was invasive and if you ever hit the site of the implant it hurt like hell! See how a trial works for you.

  6. Jean Price at 3:45 pm

    John S…and all those who are being badgered about pain pumps…ANY INVASIVE procedure has to be CAREFULLY weighed by the doctor AND the patient! There are risk involved IN ALL! With spinal stimulators and definitely with pain pumps, the risks can be significant. And if you’re told not to be concerned because it doesn’t happen to even one on ten million…that’s not fair or appropriate…because you have to look at it as If you’re that one, and it will impact you, versus what the potential risks of other options. Besides, just what is the doctor planning to filling it with if not some narcotic? So her statement about pain medication making pain worse is invalid! For several reasons!

    The whole idea for pain pumps originated out of situations where pain medication wasn’t at least fifty percent effective. It was considered a LAST resort…NOT a treatment to choose because of regulations and guideline rules of a one-size-fits-all nature which denies oral pain medication AT APPROPRIATE DOSES!!! Any doctor who doesn’t acknowledge the risks isn’t being honest! And then YOU have to decide whether you want to continue with this kind of care.

    Maybe when you sign the permit, the doctor would need to state (and also sign!) saying there are NO RISKS, AND NO other viable medical options, including opioids at an effective dose! I’m guessing no doctor would put themselves in such a liable position. Pain pumps WERE so selectively used, people had to fail at stimulators and HIGH DOSAGE ROUTINES of narcotics before they would even be considered! There was a reason for this…they require invasive procedures, general surgery, both at the beginning and to change batteries, if I’m not mistaken. And a malfunction could leave you either in horrible pain with no medication being delivered…or worse, overdosed from too much medince being let out at once. They are options, and have been lifesavers to some people…yet not something to be considered routine or lightly! Hoping you get what you need, and don’t have to be bludgeoned into doing something risky you don’t want to do!

  7. Christina at 12:16 pm

    It’s all because of the CDC guidelines. I’m moving states and I just saw the chart on doses were I’m going and how can you come up with that when all patients are not the same. Patients metabolize tablets and transdermal different from patient to patient. We really need to SCREAM for more study on this issue. Since they guild lines have come out patients have been getting cut drastically on doses that haven’t been effective for them for years. All over greed of some doctors is screwing everyone else and that’s not right.
    Political people we point need to hear your story So they can begin to understand our frustrations and stop deputies pharmastist . That’s not there job to know how I pay for my doctor appointment complete BS… We are losing so many privacy rights to be red flag and use it against patients..

  8. MichaelL at 12:06 pm

    The risks are being denied by these doctors. There is always the risk of surgery, although I think it is done under local anesthesia. There is the risk of infection. Believe me, MRSA is nothing to be light about. People die from it! It is all to common, as well, in today’s hospital environments. There have been problems with the pumps, as well, which are mechanical and always have the risk of giving too much medication and over-dosing (and killing) the patient. Denying complications and risks is negligent, from the get-go. Any doctor who is not honest should not be working on patients! It also makes the doctor a boat-load of money, at over $10,000 per surgery! That is enough to make me wonder about any doctor’s motivations in demanding that patients get pain pumps installed! And, in case none of you knew, up until about fifteen years ago, anesthesiologists were only working in operating rooms with the most complex procedure they performed being spinal taps for anesthesia, central venous lines, arterial lines, and endotracheal intubation-s. It is a rather young specialty, with no one with vast experience.

  9. Kathy Malles-overcast at 11:11 am

    I have this same issue. My Dr. has been trying to push a spinal stimulation on me, I leary about getting one of these, because I joined a couple of Facebook groups where people have these and I have read a lot of mixed opinions plus my boyfriends brother had one and the battery’s leaked and got in his kidney’s and almost killed him. Besides I’ve tried to make my dr. understand that the stimulation is only going to possibly help my back and my back isn’t my only pain, I have sever Fibromyasia so I would still need pain meds, but I just know the reason she is pushing this is to try and take away my medication

  10. John S at 10:22 am

    Chris, It’s a big mirror !

    After a long search I was able to find a Dr and she made the same demand – it’s not a choice, she is requireing me to get the Pump.

    So far she has reduced my IR meds by 50% and wants me off all pain meds prior to getting the Pump installed.

    This new Dr told me ” Pain medication only makes pain worse ” but she also said ” I know your pain is Legit but I don’t trust you sir ”

    I told her that “my oral meds work and do the job so why do I need a pain Pump”. She told me the criteria has changed and the Pump is the best form of treatment. I asked about side effects and she responded -” what side effects ”

    Clearly a sign of the times but I’m not buying it until all my questions are answered.

    I will follow with more of my story.

    Thanks Chris,

    John S

  11. Chris at 4:35 am

    I also had dr frank for 8 years. Your story mirrors my own. I was lost spent 2 months being humiliated by 3 different doctors and there staffs.finally got to a dr to fill my rx. But he keeps trying to give me a pain pump.I am afraid that if I refuse he will drop me also.

  12. Christina at 9:47 pm

    Try looking around to other states that connect to your state. Try different search engines too.. I’m getting ready to move to another state and I’m SCARED to death. I have also been getting cut back by the pharmacist telling me and the doctor how many tablets and that I can’t have soma with oxycodone. One tablet a day is not a lot and has been the only muscle relaxer that has helped me after trying ALL other ones first. I wish I had the funds to go around the U.S and documents all the laws that are changing in each state and how real it’s getting for pain sufferers. How there has to be other solutions and realistic problem solvers for patients that are in pain and how disability is failing the people of the U.S.. I wish I could do it I would in a heart beat.. Please stay strong pain patients it will unfortunately take time for things to get better but try to hold on to hope…

  13. Tim Mason at 5:56 am

    Debra, Excellent comment. Often times, the NP or PA try and make decisions they should not. They are most often more judgmental, have less empathy.
    These people are still on a steep learning curve. Often times, the MD has to step in once the patient/NP relationship has been compromised.
    As a patient with chronic pain YOU have the right to speak with an MD and not always by proxy thru a nurse, NP or PA.
    Around here no PCP has written narcotic pain medicine in 8-10 years.
    Pain care is now a specialty with enough red tape to circle the earth 100 times.
    It is a game that must be played by a set of rules.

  14. JoDawn at 1:52 pm

    Hang in there. Praying for you.

  15. Debra E McDonald at 1:17 pm

    Oh John, my heart breaks for you. I finally got in with a pain doctor yesterday and the nurse who checked me in was so rude! She would ask me questions and before I could answer she would cut me off! I couldn’t believe she was treating me this way. Next they sent in a “fellow” who basically asked me the same questions. She said they had not been given my records. I said, I can show them to you on my phone. My pcp had a program called my chart that had all my records, tests, everything that I had had in the last 6 years. She looked at my mri results from 5 years ago showing what a mess my back was. She at least took the time to read it. She flipped when I said I was almost out of Morphine that I had been taking for years. She said, well you aren’t going to get them from us! You’ll have to get them from your pcp. My husband jumped up then and said no, he said that was why he sent us here. I said, so when I go into withdrawal, what do I do? go to the ER? she just looked at me. Then the doctor came in, he couldn’t have been nicer. She had told him my story and he said simply, I understand you have pain all over. The pain meds you take are not relieving your pain. We need to give you stronger meds by means of pain blocks injected directly to where things start. He said, of course we are not going to let you withdraw. He gave me a schedule and meds to step down. I was so grateful! I don’t care how they stop my pain as long as I get relief! I’m going to keep praying for you, that you will be able to get relief. I know how terrified you are because I was until yesterday.
    Interestingly the physician said what my doctor had done (give me a final prescription for opioids without giving me a referral) just like you is ILLEGAL!! wow. think about that.

  16. Carla Cheshire at 12:34 pm

    I listened to the online forum that the Harvard School for Public health had today “The Chronic Pain Epidemic, What’s to be Done?” I asked the experts what to do when a doctor stops prescribing opioids to a successful, long-term patient. The answer was: They felt so sorry. One should contact their states’ Board of Medical Registration, explain what happened and ask for a physician referral. They understood from the doctors standpoint that it is the fear of lawsuits and coming before a Medical Board that is driving this behavoir. They explained that a MA state law was just passed limiting how much opioid medication a doctor could prescribe. They have a quota now. So we have the government telling doctors how to do their job. Overall, it was a good forum.

  17. John Sandherr at 11:29 am

    Update to my story.

    So far I have not been able to find a Dr. that will even see me even though they have a website that says – accepting new patients.

    Reasons given to me;
    Don’t except Work Comp insurance. This is a first for me because my Comp carrier is an Insurance company and former employer. UPMC – Univ of Pgh. Medical Center.

    I’m on medication now.

    Currently weaning all patients off of any Opiate medication. No new patients.

    No longer using any type of Opiate medication.

    They all seem to try to get me off the phone as quickly as they can. My questions don’t get answered or heard, not even a – Good luck buddy.

    I will keep trying until a Dr. is found or I’m Hospital bound.

    Starting to worry but not quit.


    John S

  18. MichaelL at 8:50 pm

    Sadly, John S,

    You are right! They don’t care because they don’t understand medical caring! They are la enforcement! For some reason they do not understand that they are not trained to make the bad decisions that they took upon themselves. They are, also, ignorant to the concept of unintended consequences. The entire concept of a war on drugs has had a myriad f unintended consequences that result in more deaths and more misery than the drugs would accomplish on their own. How anyone allows themselves to become addicted with the information available to everyone, is still beyond me! Used to be, if you played with dynamite, and blew yourself up, you were the one responsible for your own demise! Now everyone wants to blame everyone except the responsible person. Only history will tell if humans will be able to correct their problems or destroy themselves! For now, we people in chronic pain are going to be the ones put through unneeded suffering. I am angry enough to wish I had a way to inflict some punishment on those who think we deserve the suffering. Too bad medical doctors have forgotten that they are here to prevent suffering as much as they are for curing diseases!

  19. Kathy Malles-overcast at 2:53 pm

    It is amazing that you are able to be under the care of your PCP, for pain meds! What state may I ask is that possible in. I know where I live and so many others that are on some of my facebook group sites for chronic pain, pretty much every state that I know of made new laws where anyone being treated for chronic pain had to be under the care of a pain management Dr. and could no longer be treated for their pain conditions under a PCP, so your lucky, cause all these pain management Dr.’s are being leaned on and dropping their patients like fly’s

  20. John S at 2:45 pm

    The DEA & CDC set out to do a job – Rid the country of Opiate Pain Medicine so that young Suburban kids don’t end up in the morgue.

    The DEA was asked about a Stage 4 cancer patient, her pharmacy would not fill script for her pain meds. The DEA responded – these patients need to establish a relationship with one pharmacy! Then he was told – she’s been going to that pharmacy for 17 years and they still refused to fill the script. DEA responded- in a case like that I suggest calling or writing their local representative. The DEA has nothing to do with that scenario and it was not our initial intent – we want Pain Patients to get their medicine and if they aren’t it’s not our fault.

    Makes you think they just don’t care.


    John S

  21. David at 1:20 pm

    All this stuff I read is very true the cdc , fda, dea right down to the comander and chief want all the cronic pain patients to suffer it is bs and listning to to the people that want to die I think all these agency’s get a thrill on it. It is not right that they have the final say they are all dictators and need to understand what they are putting people through

  22. William Isham at 10:17 am

    Yes, specialists are, but the frontline is the primary care physicians, who received the CDC guidelines and thereafter paint all pain patients with the same brush.

    For example, my PCP, who knows I’ve never abused my meds in 20 years, has seen me through four surgeries, and suddenly decided (and under pressure from lawyers) my maintenance dose was too high, because it was 10 mgs more than a new pain patient should receive under the guidelines.

    The CDC, FDA, and DEA need to make explicit to all physicians that there are two populations of pain patients, and that their guidelines are intended for acute, short term pain issues.

  23. Tim Mason at 8:09 pm

    Pain Specialists are trained the distinguish between addicts and real pain patients, There is a lot of emphasis on body language, eye contact, and a host of drug tests by LC/MS/MS.
    They can tell if you drink alcohol with your medications, convert your morphine to diacetylmorphine (heroin). They can tell if you snort cocaine or smoke the freebase form, crack They can tell if you just take a few the day before the drug screen or if you have been taking them as directed. If they go for a hair test they can tell a lot more about your drug history. If you do not have any hair they can clip a toenail and test that.
    Forensic analytical chemistry has come a long way in the last 8 years.
    If you are interested look up cut of times for drugs of abuse. Pay particular attention to cut-off limits. . You should be able to find data for urine, plasma, saliva and hair.

  24. William Isham at 11:58 am

    Someone above mentioned a law firm above… and it gave me an idea: what about a class-action law suit against the FDA/DEA for failing to train doctors about distinguishing between addicts and chronic pain sufferers, such that we return to painful diminished lives?

    The FDA guidelines completely fail in helping doctors understand the difference between addiction and dependence. They are swinging the pendulum too far because of their ignorance and slander us in the process.

    I’m not saying it well, but I think we would have standing in such litigation.

  25. keith thomas at 4:06 pm

    I saw this coming with my pain management Dr.I am getting a lumbar pain infusion pump.This partially eliminates the need for pain Dr s.My spine was ruined by cortisone shots which lead to tumors and surgeries.that’s how they play.inject then dump you.now I will see a Dr once every 3 month.Just a strategy depending on your pain.👍

  26. Kathy Malles-overcast at 12:31 pm

    I fully agree with you!! We need to be able to fight back!! This is totally wrong, how we are being treated…how we are being left abandoned and left to suffer in pain, because of what true addicts on the street are doing! We “the chronic pain suffers” that follow their rules and take our meds as prescribed, and still we are stigmatized and treated as addicts, and now being abandoned by our Drs. and just left to suffer….this is all so wrong!!!!!! because they (the DEA) can’t do their job and get a grip on the street addicts, they are choosing to target us instead, so it can look like they are actually doing something. I can’t remember back when the DEA was formed, I think it might have been back in Nixon’s “war on drugs” administration. but whenever it was, it hasn’t shown to be any improvement on the war on drugs, because drug use and addiction has not improved, not one little bit…so obviously the DEA is incompetent at preforming the job they were created to do. More drugs come across our boarders then has ever come across in all the years the DEA has been around. so now they are choosing to target us, because they are to incompetent to to anything else. they have failed miserably, and we are and easy target, to make them look like they are doing something, they need to be abolished!!!!!! Because we do not deserve this!!!!

  27. RAE to Carla/Kathy at 11:27 am

    See my comment (still awaiting moderation) under article: http://nationalpainreport.com/eli-lilly-settles-cymbalta-withdrawal-lawsuits-8831647.html#comment-197813
    After days of research: i think we may have some legal grounds against: “PROP”, CDC/DEA. The problem is most attorneys are only willing to rep. Cp physicians & have front web page ads stating this. We need an attorney eager and confident enough to be willing to take on maybe the 1st ever of its kind— class act., representing ALL OF US! I’m contacting Erin B. Attorney who recently represented my people here in my state against a large chem. Co. -successfully i might add!! She takes on the fights no one else will. I’m reaching out to her & will keep you all posted!

  28. Lee Bolin at 12:02 am

    I know just how you feel, but I have a morphine pump implanted in me. My first doctor that implanted the pump in me, the company he worked for, got out of the pain management business. The next doctor I saw, lasted one year. He decided to move to California. He sent my records to another pain management office. I was there for seven months, before they closed that clinic down. Never once did I ever see a doctor at that clinic. A nurse practitioner re-filled my morphine pump, and wrote me my usual 180, 30mgs of morphine. Signed a doctor’s name on the scrip. Then they closed down. The only thing I have working for me, is I am a 100%, service connected, disabled veteran, and my pain is from a service connected, disability. So the VA is who has to search for a doctor. My last doctor I saw was in Alton, IL., I live in St. Louis, MO. The pump only has a six year battery life, my last pump I had implanted, was 180 miles away from my house. No sooner then waking up in the recovery room, the.were pushing me out the door, so my son could make the four hour drive home, after I just had surgery. Here are many hospitals in the St. Louis area, why I was sent that far away is still a mystery to me, as it was not a VA hospital. I have to have a new pump implanted in the next month or so. This doctor wants to try a new non-narcotic drug in my pump, and I am scared to death. This stuff is very expensive ($15,000, for a two month supply). It is the venom from a sea snake, that is supposed to be 100 times more potent. That is what they said about my pump, since it does not go trough my liver or stomach. It is a straight shot from my pump, to my spinal region. But after so many years, you become ammune to the drug. Prior to my pump, I was taking eight, 80mgs of Oxycotin, six times a day. That is 3840 mgs. of Oxycotin each day, or 768 5mg. Percocets every day. That amount would kill a normal person. So my heart goes out to you. Fearing every day, that you wont get your meds, no wonder so many people are turning to heroin for pain. It is supposed to be much easyer to obtain, and cheaper then prescription medication. But then you have a heroin addiction, a [edit] drug addict, just because the doctor’s are scared to death of the DEA coming after them. It is a no win situation.

  29. Debra E McDonald at 7:42 pm

    Before my physician of ten years left the state he said something I won’t be able to forget. He shook his head and said, “a few years ago we received information from basically the same groups. It said basically, that as physicians we see many patients who have chronic pain that rules their lives. It is cruel to not address this pain by providing whatever meds necessary to alleviate this suffering.” Now, he added, the same people are telling us it needs to stop because we are basically handing depressed people a loaded gun and expecting them to not utilize it. My doctor got me through crisis after crisis, surgery after surgery and all the infections that occurred from those procedures. I choose to believe he was a good doctor who had my best interests at heart. I asked regularly if I could maybe get off of some of these meds and he always said the same thing. “Remember when you first came to me? I could see the pain all over your face. I’m afraid you will always have to take these pain meds until you die. And pain management doctors are not going to help you.” Now we are all facing this unsure future. Without a doctor who can prescribe what I need to live some kind of normal life, my future, I’m afraid, will be in the bed or a nursing home. I won’t be able to play with my grandson or do my laundry or the shopping. And friends, in case you missed it, is my worst nightmare.

  30. Tim Mason at 7:03 pm

    Carolyn I am right at 60 years old. At your age this could be considered “Elder Abuse”. Can you seek out a geriatric physician, perhaps an older one that will understand you pain. He should be able to refer you to an a good PM physician. At my age and definitely yours, there is no concern about addiction or diversion of your medication.
    I would consider contacting your state health department by phone. Tell them your brief story and say “I am reaching out to you for help” They will have a complete list of physicians on the state medical board and name and number of the head of the pain management board in your state. Also, a brief letter to your state senator should help as well.

  31. Carla Cheshire at 4:10 pm

    Sounds like to start we need to create a group and database where we can gather people of like minds and converse and formulate a plan of action. I know how to start a yahoo group. Is this enough to start? Then someone must know a lawyer or two that might be interested in helping us. Anyone? I can do some graphic design on my good days. We need to talk to legislators to see who will work with us. The DEA and CDC need to get off our backs! We are not the problem but are erroneously being viewed as drug addicts. This is perception that must change. Any marketing people out there? What role would the National Pain Report and US Pain Foundation among others be willing to play? Lots of questions to start. My email is:

  32. "Rae" at 2:36 pm

    Mr. Sandherr,

    I want to thank you for your article and advocacy at a time such as this! We all know how devastating this was for you & I and most, I’m sure can relate on some level. When it happened to me, I’m sure my vitals & hbp was out of whack to say the least. This is terrifying & I don’t recognize my country & the inhumanity! I haven’t been active on the net where CP is concerned in a couple of years & I’m fairly new to NPR community. I lost my 11 year CP Dr. Back in 2013. This doctor had 5 degrees: neurology, addiction medicine, psychopharmacology and pain management. He Was sanctioned by the pharmacy board. If this can happen to him…well it is happening in great numbers. During my research, I came across our state brd. Of medical examiners (didn’t realize anyone could read the case notes)& was shocked at how many Dr.s (including mine) are being either investigated or have action against their licenses. I just recently lost my current Dr. –similar circumstances. My 1st Dr. Was forthcoming but not my recent Dr. I’m not sure if this has been posted on the NPR, but this may be somewhat reassuring to those who may not be aware: (link) http://www.hatch.senate.gov/public/index.cfm/2016/7/hatch-leads-bipartisan-group-urging-hhs-to-make-national-pain-strategy-a-reality

    Not much is reassuring these days in our lives. In my “getting informed/research”, I learned there are hardly any advocacy groups on the state level as there was back in the early 2,000’s, & absolutely NONE in my state. I DO NOT understand in this climate of “pop-up” civil groups -almost over night, why we can’t get a civil class action going or more recognition? I hear ya when you say we need to stop the talk & get mobilized! I mean we’re in the millions-legitimately! We need legal representation, because this is a humanitarian crisis in my book. Thanks again & I truly wish you all the best as well as my fellow CP communities! God help us!!!

  33. Kathy Malles-overcast at 10:05 am

    I am in total agreement with you, we are not the ones that should be suffering for what some “addicts” have done. The DEA has failed miserably in the war on drugs! and so in throwing US, the pain suffers that legally take our medications for legit reasons, it is easier for them then actually going out and doing their jobs, with where the real problem is…on the streets…the DEA needs to be abolished in my opinion…..and i surely hope Trump wins, because it is for-sure clinton will do nothing to help us

  34. Tim Mason at 4:00 am

    Where I live Pain Management has been a requirement for over 8 years. No GP writes prescriptions for scheduled drugs. The shut down two or three pill mills and arrested a few doctors but nothing lately. If anything things in my area are going in the opposite direction. I just got switched from morphine and Percocet to Fentanyl and Percocet.
    I suspect that the doctors that are disappearing have not been complying to necessary paperwork and patient surveillance.
    Nothing will get a doctor under a microscope quicker that his or her Rx for a patient turning up at a Trap House.

  35. John Sandherr at 10:46 pm

    The Pennsylvania Medical Marijuana bill was signed into law by the Governor about 5 months ago.

    It will take 2 years to have the proper program in place. That’s a long way off and who knows if the Marijuana will help. I do know most feedback from pain patients is very positive.

    Thanks and good luck,

    John Sandherr

  36. John Sandherr at 10:37 pm

    So many have horror stories ( as we see it ) to tell, events that can put our lives in danger. I’ve been told that due to the dose I’ve been getting for over 10 years that if I go without meds – cold turkey – I could have seizures that would require swift medical attention.

    There are lots of groups like us and all of them are fighting for the same thing.

    I think we need to Stand as ONE and that means millions of us – I think. A big question is, How many Chronic Pain Patients are there ? How many depend on the same medication they are taking away from us ? There is strength in numbers, we need to stop just talking about it and Unite – a national coalition made up of good people that want our lives back.

    Now, how do we get started ? Social media can reach out to a lot of people. I believe if our stories are heard we can affect change.

    Good luck with the new Dr.

    John S

  37. My letter to a candidate: at 1:37 pm

    My letter to a candidate: (power needs to be returned back to the people!”)
    I am speaking on behalf of *MILLIONS* of chronic pain patients and VETERANS. There is an epidemic or crisis going on in this country that will not be addressed by the media or this current administration. One might say the stigma we all face is due in part to skewed statistics & government over-reach. I do not like telling my personal story because I know there are many suffering more than I am. Briefly: I was in a near fatal car accident which resulted in nearly 28 broken bones (shattered pelvis) & fractures. When doing research, I noticed that many of us are hoping that Mr. Trump will give us the voice we need so desperately. To understand my plight & concern: someone needs to read whats being stated in the following links:



    Please read the comments section beneath these articles! I am astonished patients are being thrown to the way-side at the expense of a few bad apples., but it seems to fit the current agenda. Its inhumane what is happening to American citizens in this country. Although I realize there is a problem: maybe putting some restraints on the powers that be re: DEA, CDC ETC might not be a bad idea. Let me conclude with this: we are an extensive voting block & need our voices heard!! We are: in many cases, being denied adequate treatment, medications (Fla. is a catastrophe), our basic civil rights, & to have a say in our care. The stories are heart-breaking and anyone at anytime could be one of us due to unfortunate circumstances-no one is immune to the physical tragedies that can befall us all at any given time.

  38. Carolyn Peters at 1:17 pm

    I have a story as we well of being dismissed by my pain doctor of about 10 years. I did commit a “sin” in that I took additional pain medication because of back pain from another doctor at a stand alone clinic.My pain was so intense and I thought maybe I had a broken back and I took it and had it refilled without telling my pain doctor first. When I told him he dismissed me immediately as I had not held unto my part of the contract.We had previous altercations about them not answering phone calls,etc. He gave a month’s worth of medication, told me no other doctor in the pain clinic would see me. There I was, a 78 year old woman out in the cold, so to speak. I did find a pain Doctor in Omaha which I have gone to for about a year. He is threatening to cut my dosage of Oxycontin from 40MG to 20 daily and wants me to take more physical therapy which i just completed in April.

    By the way, I have scoliosis which is chronic pain and often gets up to the 10 level.I have doctored with various things like acupuncture, chiropractic, water, physical therapyTens Unit,I use a walker and a wheel chair and have a horribly curved back of quite a few degrees of curvature.

    We inquired here in Lincoln for other doctors who would take me on but no one was willing. So now we drive 50 plus to Omaha. I am close to 79 and my husband is 81 and we don’t relish those trips. But believe it or not, the monthly or two month trips haven’t gone too badly.Should my doctor threaten to dismiss me if I don’t want to take the lesser amount of Oxycontin and threaten with dismissing me if I don’t take physical Therapy again? When I had physical therapy it increased my pain level very much for the next day and am very, hesitant to try it again.
    I don’t drive, my husband takes me to my appointments, does all the grocery shopping which isn’t that much, laundry,etc. I manage to go to church for an hour a week, basically shopping is very limited.-Depending on my husband’s patience.

  39. William Isham at 11:53 am

    I’ve just been through a similar situation, but have found a new pain specialist to take me on. To do this, I had to change insurance plans, from a really good one to a mediocre play, and have not even met my new pain specialist. With our backs against the wall, being able to interview or choose in any way who our caregiver will be is impossible.

    What can we do to get word out where it is needed?

  40. Andi M-Randall at 10:39 am

    Unbelievable….so sorry to hear this story but I expect there are many more like this. I myself, have had the surgery for TOS years ago that ended up causing my more problems than good, with major nerve damage, drop shoulder, chronic bursitis, chronic rotator cuff tendonopathy, and worst of all RSD/CRPS in my right hand, arm and shoulder…..the pain is what I would think hell would be like from the inside out in my arm. Constantly on fire. Hand and arm swollen constantly now. I despise the fact that this changed my life so drastically and makes me have to take pain medicine but if I didn’t have it I don’t think I would ever leave my house. I was and am a R.N. 26 years as a nurse and the last 7 years since the TOS surgery gone bad I haven’t been able to work. The Government controls our health insurance now and is now trying to control our diseases by governing what we use to control our pain? I take the minimal amount because I’ve learned my body would get use to the dose and require a higher dose to deal with the pain…….so I just have to feel pain every day but I have to take it to take the edge off or I would have absolutely NO QUALITY OF LIFE!!!!!! NONE!! Take it away from me? They will be taking the rest of my life away.

  41. christine taylor at 4:37 am

    In Ontario we are now required to return our used Fentanyl patches when picking up our new prescription. I am hoping that this action will curb the hysteria. It is recognized that heroine being cut with Fenanyl is the cause of deadly overdoses. People do sell their patches but most of the fentanyl is made using ingredients that are easily obtainable.

  42. Terri Lewis PhD at 11:03 pm

    Question of the day: (1) Have you lost your pain care because your physician was raided by DEA? (2) Did DEA confiscate the medical records? (3) Were you able to obtain copies of your medical records after the DEA raid? (4) If NOT, has it prevented you from obtaining necessary replacement pain management?

  43. Patricia at 8:43 pm

    Have any of you heard that there’s a great chance of RECREATIONAL MARIJUANA being possibly legalized with this election??? I heard this on the news today, and don’t completely understand the meaning or ramifications of it. Somebody explain please….!

  44. Dooney at 7:42 pm

    John all I can say is my heart breaks for you and sorry this has happened. Can’t imagine how you must have felt at that appt. I could be having that same appt someday too. I hope you do find someone to take care of what sounds like a very painful condition.

  45. John Sandherr at 2:44 pm

    Cheri, Isn’t it something how similar our complaints are and how we seek out every possible modality that might help. A type of medication that’s been around for a long, long time gives us enough relief to keep us going and then suddenly we are told – no it doesn’t work for chronic patients.

    Someone on Twitter wrote – it’s time to get rid of these drugs because young white kids from suburban areas are dieing from them. I didn’t know how to respond so I said nothing. We are in a battle with people that are just reacting to what they hear and have none of the facts.

    Teri listed a website that we should all look at. If people that use Kratom can get the DEA and Elected Officials to listen to them, we should be able to do the same. Who knows, maybe a single National & United group is the way to go.

    Thanks for your feedback,

    John Sandherr

  46. John Sandherr at 11:13 am

    Terri, thanks for bringing this site to our attention. We should all visit the site and use it for its desired intent – I will !

    It takes a TEAM & Dillagence to make positive change when faced with overwhelming opposition.


    John S

  47. patty m. at 10:26 am

    John, I used to live in Pittsburgh, and I had Dr frank too. I moved to Florida a few years ago. I’m so sorry this happened to you. Dr frank always made me a little nervous but he knew his stuff. I can’t believe he closed. They could have at least gave you a referral to a pain dr. This is criminal what is happening all over the country.

  48. Michael G Langley, MD at 6:44 am

    By not making sure the patient was not given a dosage schedule for weaning, the doctor appears to be negligent. Sadly, the medical boards in most states are full of people that don’t care that patients suffer, counter to the Hippocratic oath! If a doctor is not taking care of his patients, to relieve suffering, then he is ignoring half of his duties. Most diseases are treated and not really “curable”. And to those that vilify doctors for quitting, I must remind you of what happens to those who don’t! I tried to comply for years, playing the “doctor drug warrior” as a doctor who treated chronic pain. It ended badly for me and my patients. I was forcibly retired at 53 years of age and all of my patients lost their treatment. At least my patients were told how to wean themselves with their last prescriptions! Now, I suffer from a post-traumatic cauda equina syndrome from damaged nerves after a broken back. I had a pain doctor and neurologist who both bragged that they had no neuropathy patients on narcotics! The neurologist tried to tell me that I did not have neuropathy, after the pathology caused when fragments of L-2 ripped through the cauda equina of my lower spinal cord! The behavior of physicians is sickening and only because money is their master. They have forgotten what medical “care” is about.

  49. Deborah Fochler at 11:21 pm

    I am a pain patient and have been on morphine since 1990. I have a group of physicians I have had since about 1983 when I moved to Williamsburg, VA. In the last three months four of those doctors have quit practicing. The first to go was my dermatologist. Followed in less a month by my rheumatologist and then week later my primary care doctor. This week two more sent out letters that they are closing their offices – my eye doctor and my pulmonologist/critical care specialist. I dont know if this is nationwide crisis or just in my area.

    Have to point out that my rheumatologist was possibly ready to retire but all the others were in their 30s, 40s or 50s. The one I got today was the only pulmonologist/critical care doctor in this area. When he joined Sentara last year – they were raving about how good it was they were able to get him in this area. He was kind, knowledgable and a top notch doctor. Ready to explain tests and results and what he was doing and why. The kind of doctor you want. Now he will be gone in 2 weeks.

    I am terrified my pain specialist will follow.

  50. Cheri Furr at 9:22 pm

    All I can say is that the CDC and FDA better start keeping statistics on how many chronic pain patients (who are not drug addicts or pain medication “seekers”) who can no longer get the opiate medication they need to survive commit suicide after this happens to them. Because as more and more chronic pain patients are turned away from pain clinics who go out of business or are told by their doctor that they (the patient) will have to wean themselves off their pain medication because the FDA has put restrictions on how many opiates a doctor can prescribe for chronic pain (not leaving it up to the individual doctor, who knows his or her patients’ needs a lot better than the FDA does), it WILL HAPPEN. Therefore their doctor won’t be able to prescribe anything to help them in the future. This leaves the patient two choices: to buy street drugs (the very thing the FDA and CDC say they are trying to prevent) or to commit suicide. When one us talking about chronic pain this severe, wouldn’t it make more sense to develop a non-opiate pain reliever FIRST??? I believe they are putting the wagon before the horse, and how dare they penalize the patient for that! Don’t these agencies realize that chronic pain patients don’t WANT to be on opiate medications? That we have tried every other type of alternative therapy there is? Of course we have! I have never gotten “high”
    from taking opiate pain-relieving medication as prescribed by my doctor. I have never misused my medication. I do not drink alcohol. I HAVE tried nerve blocks, epidural nerve blocks, massage, physical therapy (regular and in the water), muscle relaxers, acupuncture, mind control over pain done through computer therapy, sleeping pills, analgesic patches, a specially compounded cream also used externally for MS patients, and any other form of therapy five different doctors could think of that did not include opiate medications. None of them worked, so I have no choice but to take them opiates because the pain is so unbearable. The pain never goes completely away, but it is at least maneagable with the yse if prescribed opiod drugs. I also take two antidepressants and see a therapist as well as a psychiatrist. If an alternative drug is not developed for severe chronic pain, my life would be so unbearavle that I would no choice but to commit suicide. Is that really the iutcone the FDA and CDC want?

  51. Laurie Otto at 5:53 pm

    I can’t agree more!
    Please send me your favorite kratom websites. I’m a member in a good number of them, but as you said, our small kratom family has Quadrupled OVERNIGHT due to the threat of banning.
    The only things I would like to add is 1) an important difference between kratom and opiates – no resale market! Nobody buys kratom to sell it for more to someone else, except for vendors! There won’t be – unless the ban goes into effect after Congress discusses the topic.
    2) There are bad apples in every aspect of life, but it’s not difficult to find reputable and safe resources. That will remain unless the ban goes live. And it doesn’t treat ALL PAIN and it takes a good deal of work, time and money, to learn about the different kinds of plants from different farms, so you can’t rely on it as easily as taking a pill and going about your day. It’s more complicated – at first. Insurance does not cover the cost, and the ban killed the free sample market that vendors happily provided (many at their cost) to allow for testing and seeing which one works best with your particular metabolism.

  52. Mike Sandherr at 1:17 pm

    I’ve witnessed my dad suffer since i was just a small child. He’s the best person you’d ever meet and puts everyone’s else’s needs before his own! He deserves to live a happy and some what pain free life to enjoy with his family especially his grandchildren! I got medically discharged from the USMC cause of my back and other medical issues. All I can say is people on pain meds aren’t addicts most are just under treated. The only epidemic in western Pa is Heroin and that’s caused from our own govt! Love my country but hate my govt!
    Love you Dad and for all you’ve helped me with!! STAY STRONG!!
    All of you

  53. Kathy Malles-overcast at 11:54 am

    John, you commented back to me and wanted to know more about kratom. I accidently deleted the email that came to my box but found this in my trash, so hopefully this will go through to you. I started doing kratom about 2 years ago, at that time I was on norco 10/325 6 times a day, and on fentanyl parch 100mg every 72 hours. Once I started the kratom I didn’t need near that amount of pain medications. So i just started taking them as needed. I never had my Dr. cut my dose at least not of the norco, I did have them cut my fentanyl down, I am currently on 25mg every 72 hours but for the most part I try not to have to put on a new patch until the 4th or 5th day. I still receive the same amount of norco per month, because with kratom’s uncertainty, I didn’t want my dr. to cut down my prescription because I feared if kratom became illegal trying to get the dr. to re-up my prescription might be difficult. I get 140 norco a month and only use perhaps 30 a month, because using kratom helps me so much that is all I need. This stuff is an amazing herb, and I am on 3 or 4 kratom social media pages, where you can read posts, and ask people questions about what all it has done for them and where you can also find reputable vendors, who sell kratom that is 100% pure not tainted with anything. Kratom is used by thousands of chronic pain sufferers. who have everything from back issues to fibromyalgia to RA, to MS, and yes it has helped many a many of addicts who were addicted to heroin, pain meds, suboxone, methadone, ect. I much prefer treating my pain with kratom because my head stays clear I am not all zombied out, I am not putting substances in my body that can cause harm, and there is no way to accidentally overdose on kratom and die in respiratory depression plus kratom gives a boost and motivation to get things done and and overall feeling of feeling happy and calm and just feeling much better than pain medication gives. I swear by this herb..it has truly saved my life! If you would like me to refer you to any of the groups I’m in so you can learn more about kratom and i could recommend a couple of honest vendors who sell kratom and don’t taint it with other substances(like some online vendors do, this practice has given kratom a bad name)I I love kratom, and also when i drastically cut back on my use of norco I never suffered any type of withdrawal symptoms at all! kratom does not contain any opiates, but is able to react on the opiate receptors in the brain, and this is why there are no withdrawal problems and why it helps so much with pain. there are people on my group sites that have been on high doses of medications like yourself and they have really bad issues with severe issues with their backs and stuff and kratom has helped them all. When the DEA did the thing with the ban, it actually sort of backfired, because so many more people became awre of kratom, and ended up trying it, and so the DEA’s ban caused the kraton community to even grow bigger. Email me if you would like more information or would like me to tell you how to join the kratom groups. you can do research online about kratom, but be aware you will find some biased information there, that is put out from sources like the DEA and big pharma in and effort to downplay kratom. On the groups you can find articles that tell the whole truth about kratom,And even though the DEA id trying to claim kratom has killed people that is not true. they relate 12 deaths to kratom but what they fail to reveal is those 12 deaths also had numerous other drugs that were more likely the cause of death in these people. my email is kathyovercast57@gmail.com. I really think kratom might help you, especially with that your dr.’s have cut your pain meds down by so much. I highly recommend kratom to lots of people who suffer from pain, because i know how much it has helped me and i know lots of people that it has saved their lives, and the DEA is so damn wrong to want to take this herb away from those who rely on it’s amazing properties!!!! Kratom is a member of the coffee family and is about as addicting as coffee is. I have stopppd doing it for up to 5 days at a time, and about all it did was I hurt because i wasn’t taking it and I had a slight headach

  54. Barbara at 10:57 am

    You all might want to read this GAO account. The GAO audited the DEA and made some recommendation. They want to make sure the DEA keeps themselves legal. The DEA will not take the recommendations. http://gao.gov/assets/680/677498.pdf

  55. Debra McDonald at 9:08 am

    I feel the same way. I’m on St. Louis and we have a great law firm close by that I might could get excited about our collective issue. This isn’t a couple of physicians dealing with a few patients! Since I posted yesterday I’ve gotten dozens of posts that they are in the SAME SITUATION! I’m not trying to get rich, I just don’t want to go thru more years of trying different things while I’m in agony. My email is dem9515@yahoo.com. I think it would be a good thing to open a group of us to lay the ground work to get this off the ground.
    Debra McDonald

  56. JoDawn at 9:08 am

    Well, everything has pretty much been said. We are all either scared of being dropped, or trying to recover from it.
    My family really should move for my hubby’s work, but I’m terrified to find a “new” dr.
    The DEA wants to cut back on opioid meds, but doesn’t want to look at other options, like kratom & cannabis, even though there are more than enough studies to show that the later would be a much healthier option than opioids and in many anecdotal cases, more effective.
    Follow the money, indeed.
    I add my prayers and my sorrow that you are forced to deal with this to all the others here hoping your life improves quickly. Along with my fears for when it happens to me.
    God bless and keep us all, even if our doctors & clinics won’t.
    And never give up!

  57. Barb at 7:41 am

    John, so sorry for what your going thru…I’m in the same boat but just add migrains! Try to find a Dr to treat you for all that chronic pain and migraines and they look at you like your a drug addict. It took me 3 months b4 I could find a Dr to give me a 3rd of what medication that I was on! B4 I lost my Dr my pain level stayed at a 5 all the time, but life was tolerable. But now now 7\8 on a daily basis is life not worth living sometimes. But I’m a fighter and I won’t let the GOVERNMENT tell my doctor what to do. Good luck John, saying prayers for all of US!!

  58. Tim Mason at 1:40 am

    None of this makes any sense. I live in a state and area where methamphetamine use one of the highest in the country. However, we do not seem to have a heroin problem (the real epidemic called opioid crisis). I did see where a 58 year old man in Seattle killed himself a after being “cut off” like you mentioned S.
    I suspect there are some documentation rules that were not followed.
    Doctors are educated to look after people. They are not know for their accounting and secretarial skills, especially math. (this is why you see a lot of practice managers busted for embezzlement that goes on for months or years).
    It takes money to “staff up” and monitor.
    I still remember the days when every exam room had a blank Rx pad in each exam room. Sometimes the doctor would even come in smoking a cigarette.
    Sounds like your doctor was “sloppy” and it damaged his/her patients.

  59. Patricia at 12:05 am

    John, )and others),
    My heart breaks for these stories. (I have to say I’m especially sympathetic to JESS, the veteran USMC for what he did for our country and now to be treated such.)
    John, I went through something similar this past August too. I was immediately discharged and only had enough meds for 2 weeks. I panicked! The nurse wouldn’t discuss it but they did give me a list of pain dr’s in the area. Still it was weeks before I could get a doctor to take me. I had to go through “hoops” to get a new doctor. They all wanted to review my records before making an appt! I was in sheer panic!! I did get a new pain doctor but he won’t give me what all I was on previously. I’m maintaining on a lower dose of a less strong drug, but at least I’m being treated! I’m thankful for that. God bless you John and EVERY ONE of you folks. Someone mentioned a CLASS ACTION SUIT. well that sounds plausible for us! Anyone want to do some research?? I’ll help. Also JESS thank you deeply for your service. It wasn’t supposed to be like this. So sorry for your pain and discouragement. God bless you. Really you are not alone, even though you feel like it.

  60. John Sandherr at 9:52 pm

    Dr. Isben; You sir are 100% correct.

    During my drive home I kept saying to myself – I wish I could have documented the entire event on video so that I could show it to my State Rep and every politician in Pennsylvania. I’m sick of hearing ” Oh, no doctor would let that happen “. While waiting to be seen that day the FedEx driver came in and said to the receptionist – I thought you guys were closing but you’re still here. The FedEx guy knew before the patients !

    I think we do need to change our approach to how we can get those that matter to listen to us. Just recently I listened to a 2 hour Podcast about the Kratom – DEA reversal – to reschedule to a Schedule I and then because of the thousands of complaints they received via social media and elected officials, forced the DEA to put the rescheduling on hold. Kratom users went directly to the office of their Senator or Congress person so they could see and hear from people that said ” Kratom saved my life “. As Chronic Pain patients, we say OPIATE and we are with just the use of the word – Drug addicts.

    Thank you for your kind words and thank you for being an inspiration.

    John Sandherr

  61. Jean Price at 9:40 pm

    No words…just sadness, deep and profound. I am ashamed that our medical profession is abandoning those who need them most…and that money, power, and deceit is behind it all! God help us! You are in my prayers, John.

  62. S. Curry at 9:34 pm

    Dear John, brother you are not alone. My situation is almost is almost identical with only difference of only 7 lumbar surgeries (3 botched and infected) and 4 hip surgeries. Surprisingly, only the original WC orthopedist was willing to use the term arachnoiditis on me. I was on the same dose as you, totally functional and had been seeing the same pain mgmt. Dr. for 16 years. I went in for my monthly appointment in April of this year and my physician was GONE due to “her having to leave the state to take care of her sick mother”. The Dr. that owns the practice didn’t even have the cohones to deal with all of her now ex patients, he had his PA due the dirty work and give me the news that my meds. were being cut by 65% . (and this was only the beginning) I should have suspected something when they bumped my appt. time up to one o’clock and the waiting room was packed and the nice stooped-over elderly lady using a walker came out of her appointment looking like someone had just punched her in the face.
    Anyway, I pleaded with the PA and had my meds only cut by 50% instead. I tried to tell myself that maybe this was a good thing and that I could bite the bullet for a month and maybe get them adjusted back up the next month. (By the way, nothing was discussed as to why this was being done nor any program in place for gradual weaning). I was miserable for the month, came back in May to same office to a new pain mgmt. doctor. My pain mgmt physician of 16 years’ name was already removed from door and new doctor was someone who had attended Oral Roberts medical school. Butt injection (another useless Ichial Tuberosity shot) immediately and was told my prescriptions were at front desk. I picked them up and like a fool didn’t bother to double check them until I got home and realized they had been cut by another 30% without a word being said. I was living in a fool’s paradise and finally woke up to the fact they were dumping me but didn’t even have the guts to tell me. I had called the office to see if the doctor had made a mistake on dosage and was told by the office insurance worker that the practice’s owner (MD) “was cutting everyone’s dosage down until they didn’t need them anymore, just injections)”. This is happening all over Florida even though they just put a state monitoring system into effect, probably as a prelude to this DEA crackdown. I had to find a doctor that doesn’t accept insurance just to get half the dose I got for the last 8-9 yrs and am pretty miserable, not from withdrawal but from uncontrolled pain. John, I find your comment about Bain Capital interesting because Florida has a Medical Marijuana amendment coming up again in November(barely failed by 2% last time) and from what I hear, there is some big hedge fund backing it. I hope at least that passes and perhaps some relief can be found in cannabis. This whole thing is disturbing an sickening from the collusion of the Surgeon General to the CDC, the DEA, big money interests and probably Obama. To thing that I voted for him makes me want to hurl. Good Luck John!!, Hang in there. Do you guys (Penn.) have a medical marijuana law there?

  63. John Sandherr at 8:22 pm

    Kathy Malles-overcast, Thanks for taking the time to read my story and for sharing your own situation with us. Wouldn’t it make things so much easier if our complaints about pain were limited to just a single part of our body. That’s kind of how I feel – If only my low back hurt – but it seems as though most chronic pain patients that use Opiates and get relief are those that have pain in more than one area.

    I’m very curious about – Kratom – you mentioned that you have used it with some success. Can you elaborate a bit more ? I’ve read that a lot of people use it for withdraw and some do use it for pain and anxiety. After I heard the DEA was making it a Schedule I drug and then reversed their decision I was completely baffled, the DEA seldom if ever has done that. They said it was from all the complaints on social media and the politicians they heard from claiming that Kratom was helping addicted people get clean. If Kratom is helping you with your pain I would love to hear more about it from someone like you.

    Thanks Kathy,

    John Sandherr

  64. Mark Ibsen MD at 7:37 pm

    Poignant. Real.
    Unfortunately, our stories are SO unbelievable that no one believes them.

    Someone please film their next catastrophic office visit.

    We have to tell this story in a new way
    A way that can be heard.

  65. POP at 5:28 pm

    Sue the SON OF A [edit] for misrepresentation of his relationship between doctor and patient. Especially since you asked that important question before and the answer you received was that you were safe. Then to find out that this particular doctors intentions are focused on the masses of people he himself will be sending into withdrawal or even to the streets to self medicate.
    Pain doctors should not be allowed to close practice unless they make sure that each and every patient they treat is referred to another physician and until these [edit] start getting sued for everything they have, they will continue to not give a [edit] about any one of us. Hit em where there conscience is, their pocket books.
    I would hang out at his office every day until he closes it and get every single patient involved in a class action suit.

  66. keith thomas at 1:56 pm

    Get a pain pump.Its been rumored the govt will be pushing this.it’s very effective.much less medication.better pain management.less dr s visits.may God protect you.I’m going for my pain pump trail.I’ve had 6 major back surgeries.don’t like pain meds.but I believe this is a 👍 option.hurry

  67. Kristine at 12:49 pm

    Im so sorry to hear how you were treated and the nightmare of finding a new doctor that could help you.
    I recently was at my pain specialist and walked out without a prescription because she couldn’t find a medication that could help my pain without my body reacting to the medication in bad ways.
    So what now? I can live in this pain and they can turn their heads like I don’t exist?
    I see my rheumatologist this week and I start biologics this week I hope. I hope they help because now I’m in worse pain than I have been in years.

  68. Christina at 12:05 pm

    Dr ibes is right the DEA followed the money and they let the pain clinic gets out of control. These places filed for license when they opened their doors. They knew they were there. They let it get so bad on purpose to pass regulations and legislation and in my state deputies pharmist and next was Obama. They are taking more and more rights away and if we dont start to try and find a way now they will make it impossible to get any relief. Theses people making decisions are people we elect and people who do not live with what we do. Medical evidence is becoming were it does not hold any wait. They will keep squeezing the doctors whom will not stand up for themselves and its very sad..

  69. Zyp Czyk at 11:34 am

    Dear John – your story has me in tears too. I can’t believe what our supposedly “medical” system has done to you and I fear for your health – both physical and mental.

    This is the worst story I’ve heard yet and it goes right to the heart of this issue. Are our doctors no longer allowed to exercise their highly trained level of medical knowledge and expertise to treat their patients? Are we all under the control of the DEA’s latest whim on what to label as a “crisis”?

    So many other MUCH more common preventible causes of death (for instance, medical errors) are known and ignored, but the DEA picked this one to make an issue of. Perhaps it’s because they’re being phased out of the marijuana battle? If they can’t go after pot smokers anymore, which seems to be the majority of who they go after, this rogue agency would have their budget cut due to a lack of work.

    I believe we’re caught in the DEA’s desperate fight to survive irrelevance, to seem like they’re doing their job of “keeping American’s safe from bad drugs”. The reality is that their efforts are leading to increasingly poisonous drugs on our streets, killing people right and left.

    My heart breaks for you because I, too, have clear physical reasons for my pain (EDS, a genetic disorder) and I always thought that alone might keep me safe, might convince my docs that I “really” needed pain meds. Now your story has destroyed any such illusions of safety I had.

    I’m disgusted that our (?) country has turned into a bunch of feckless cowards following a bunch of amoral and unscientific loud-mouthed liars and profiteers.

    I’m now even more terrified of the DEA’s control over our future, and you’ve made me even more determined to fight back.

  70. Candace Way at 11:22 am

    I understand the scrutiny doctors are under regarding opioids. It is happening here in Canada as well. There is true irony to the fact that your doctor is going back to run an addiction clinic because he cannot properly treat patients who require opioids for pain and do not overuse them. I’m sorry you are put in this position from, in my opinion, a knee jerk reaction to some
    highly public deaths from people who could buy anything they want. It is NOT well thought out legislation.

    I am on many medications for various reasons including pain. My doctor and I have done all that we can to keep me from needing more or stronger meds eg trigger shots, Botox, topicals, etc. I am frankly lucky and thankful for the government and company
    medical that makes those choices available to me. I know many people who have been on opioids for pain that haven’t had that choice and have had to be weaned from them due to similar warnings doctors up here have received to their governing body by the government.

    It seems to me that this type of interference is not only unfair, it targets those who are unable
    to afford to try other types of treatments due to cost, availability, etc. When you mentioned about the flow of money in this situation, it does make perfect sense. When are we going to learn that helping each other builds better societies and governments. All the best John. I wish you the best in finding some resolution to your problem and soon

  71. Kathy Malles-overcast at 11:17 am

    I really feel for you. I’ve been on pain medication for 16 years, for severe chronic pain. I have a number of disorders that cause my pain. I take my medication as prescribed, never run out early, follow the rules to the letter, but yet recently my Dr.’s have been pushing, trying to cut down my medications and i fear they are planning to take them away. I can not function without pain medication, I would never be able to even get out of the bed. If they take it away I’m as good as dead, because I just won’t choose to live if my life is spent in bed. The DEA is way out of line, I recently signed a petition to get rid of the DEA, they should not have the power to tell Dr.’s what and how to treat their patients, they did not go to medical school and do not know any thing about our medical issues.I keep seeing articles and hearing how they have determines long time pain medication treatment is proven to not be effective, that is BS , yes tolerance develops, but if medication is prescribed the correct way and a person takes it as perscribed it does continue working. The DEA ”s power is way out of line. Personally I have found and herb that really helps me, in conjuction with pain medication, but the DEA is trying to ban that herb as well. it was suppose to be placed under schedule 1 as of Oct 1st, but the kratom community has been fighting the DEA with petition’s and got 51 congressman and senators involved, so currently the ban has been suspended. The DEA knows nothing about this herb it is completely safe and has saved many lives. Many chronic pain suffers use it and have used it safely for years, and because of this big pharma wants it banned and they are in cahoots with the DEA.The DEA must be banned!!!! They wave their power around and have to much power. They know nothing about us people who suffer chronic pain…most opiate overdoses are not from people who obtain opiates legally from dr’s, most of the overdoses are people who obtain them on the streets and abuse them so why must we suffer for these people illegal abuse of opiates.John you should look into kratom, I believe it will help you, it helps so very many people

  72. cindy deim at 11:10 am

    I am stunned by these doctors. Not only because they don’t care. But they aren’t fighting, why. Why are they so afraid to stand up. I’m disappointed in the profession as a whole. It make me sick to my stomach to hear this story. I’m sorry you were treated so badly.

  73. Debra E McDonald at 10:30 am

    I know I didn’t write this post but it is EXACTLY my story too. After 10 years of trying a small fortune for different meds, We finally found something that worked. I still have pain, even with the morphine and oxycodone, but I have 10 days left of meds and my doctor has moved out of state. I have a new doctor, (emphasis on the new, think Doogie Howser) who has referred me to a pain clinic. They don’t give out opioid prescriptions so I wonder how I am going to do this. I know your fears and we are the same age. Would you please stay in touch with me? It helps to know someone else is going through this, although I wouldn’t wish this on my worst enemy. my email is dem9515@yahoo.com. Thank you in advance. Debra

  74. Sara B at 10:23 am

    John – I am so so sorry. I had the same conversation with my GP two months ago; our relationship has spanned ten years. For chronic daily migraines I have tried every non-opioid medication, injections, physical therapy, diet changes, alternative medicine ($$$) and even a nerve stimulator implant, which was removed after four horribly invasive surgeries due to MRSA. I was so sick after the surgeries, I never wanted to contemplate something like that again. The pain department wouldn’t take me after I tried buprenorphine, because their programs “don’t work for migraines”. The only thing they offered anyway was buprenorphine patches, which I am allergic too, and they didn’t work on my pain. I really wish they would have worked, or anything else I have tried for that matter. Every doctor and nurse (except neurology, who have been on an anti-opioid track for years, which is not always a bad thing at all) I have come into contact with in the extensive doctors’ offices I visit (and there are a lot) have told me that I am one of the only people they think legitimately needs opioids. BUT we are all resigned to the fact that I won’t be able to get them in the future – no one has a solution, alternative, or any idea of what I should do about it. I am on an incredibly low dose – most days 2.5 mg, but it doesn’t matter whether you are on a low dose or high dose, it’s ALL going away. I know a migraine patient who was prescribed 7.5 mg per month, and they took that away too. What harm is three pills a MONTH??????

    My appointment with my new doctor, and I’m sure the end of my prescriptions, is tomorrow – please wish me luck! I know that you know exactly how I feel and vice-versa. We will get this changed eventually, although I think it will be many years. PLEASE HANG IN THERE!!!!!! Extra thanks to your wife – my twelve year relationship ended last year, and it’s left me very devastated.

  75. Carla Cheshire at 9:01 am

    Oh John. This absolutely sickens and scares the hell out of me. I’m in much the same boat 13 years with the same great doctor and wondering when the ax will fall. I’m going to start researching Portugal where all drugs are legal. This may be our only option. The US is my home country but when it no longer cares for people in pain and wishes we would disappear, I feel it may be time to go. I read a lot in my condition it’s one thing I can do. This is just what the Nazis did. They rid the Reich of people that were a so-called drain on society. The sick, the disabled, the mentally ill. They euthanized them. We are not to this point here, they just want us in intractable pain and then let the chips fall where they may. Suicide lets them off the hook. How is it legal for a medical doctor to not provide care, pushing a patient into pain and withdrawal and say, “Find another doctor?” Can someone please answer this question? What are medical ethics? I wrote recently to the Pain Medicine News Magazine and asked them to do a story on pain patients who had been cut off of their medications. I said this was leading to suicide and the Black Market. This is the story they ran: http://www.painmedicinenews.com/Multimedia/Article/10-16/Study-Elucidates-Reasons-for-Discontinuation-Of-Long-Term-Opioid-Therapy/38293 Enough said.

  76. JESS at 8:59 am

    I am a usmc vet a scout sniper, a ex eagle scout, a ex squad leader in the sea kadets, i LOVE my country but i am now praying for the day my beloved country will burn. I have lost all hope for a good future at all and in that i pray for and hope the suffering those in our gov are and have caused will someday be made to pay in the most severe way possible and for that to happen my beloved country must fall to a foreign power or a internal revolution, i am done being a pacifists to these evil asshats pretending to lead us, LET THEM BURN WITH ROME AND THE REST OF US.

  77. Kristen at 8:37 am

    John, I’m so sorry for what you’ve been through. Pain patients have been severely mistreated in this country. The government has taken away opiates, is trying to ban kratom, and is making medical cannabis an impossibility for so many. All thanks to Big Pharma/FDA/DEA – the reason for the opiate crisis in the first place.

    I have a painful connective tissue disorder and now take kratom and LDN to manage my pain. I’ve been off opiates since a medical detox almost 4 years ago. It was hell. Kratom can help with w/d as well… I wish I would’ve known about it then!

    I “plan” on recovering (from my incurable condition, lol) and spending my time advocating for those with chronic pain and illness. My daughter is one of those people. We must NEVER stop fighting!!

    Hugs, Kristen

  78. Pam at 8:36 am

    I doubt this comment will pass the muster with those who control the comments of this site, but John I would highly recommend you seek out the help of Dr Mike Longeran in Weatherford OK who administers the Inflammation Injection (or Jesus Shot) as his patients have coined it. I joined this site to comment on the ludicrous accusations made against Dr Mike in a previous post but didn’t find a way to do that. I have had the shot. I have family members who have had the shot. We’ve met and talked with Dr Mike. The shot and he are being villianized by folks who have not. Read the posts everywhere and you will find only praise for Dr Mike and his protocol from those who have actually received the wonderful pain relieving results of the shot. I hesitate to broadcast this information because I absolutely believe that those who profit from our pain will do all they can to stop him. But I “feel” you desperation. I’ve been in pain for 25+ years. Am I completely pain free after the shot over a month ago – NO. But so much better that I now have a zest for life. I want to get up in the morning and accomplish things. I want to plan events for the next day. Did Dr Mike do some things in his past that he shouldn’t have and that he’s not proud – YES. And that’s all the sensationalist want to talk about. Not the great work he’s doing now. Talk to him. He’ll tell you. Good luck John.

  79. Maureen Muck at 8:24 am

    You poor man, I feel your reaction. Earlier this year my pain doc was endicted on some spurious charges. We patients had no knowledge of the future. I was blessed to have a neurologist and pc who helped temporarily. Neither knew any pan docs taking new patients. Those two docs were also compassionate, but made sure I knew their help had to be temporary. My neurologist/pain doc is back again, with supervision and a possible trial hanging over his head.
    You are correct, John. The naysayers would not survive very well in our pain with no relief. Thank you, I appreciate your sharing your experience. Godspeed as you go forward.

  80. Diana Gordon at 8:11 am

    THANK YOU!!! You have described a large part of my “battle” with the medical profession and others who think they should be able to over ride doctors who make decisions re treatment based on their medical expertise. No one talks about patients who have lived for decades taking pain medication AND have managed to do something other than go to doctor appointments with the help of those pain medications. When my pain doctor retired five years ago, he desperately sought to find a doctor who could treat me with medication and provide other support (other things in my toolbox). Because of the limited number of doctors who prescribe pain medications, he finally expressed defeat. I have now been seeing at least two doctors for the same health care. Unfortunately, the more doctors you put into the mix, the less likely they are to coordinate my care. So I ended up playing “telephone” trying to explain what a different what doctor advised and suggested treatments. More often than not, these various experts “bad mouth” the other doctors, dismiss the idea that the treatment suggested would do any good (and more likely will cause harm). But as I lie in bed exhausted from the pain and trying to deal with the system, all I can think of is, “I’m DONE.” Not that I’m done living — I’m done being a professional patient. After 20 plus years with chronic pain, I need a doctor / a team of doctors to take responsibility for my health care. I’ve met two “hospitalist” who have strongly supported this idea. I think it’s a unicorn… I have not found anyone who will take on that role.

  81. Beth Acker at 7:49 am

    I too have arachnoiditis and have the same fear that because of the scare, that has been put on the public and government authorities, that “all opiate users are addicts”. I certainly do think there have been many abusers out there but unfortunately the innocents, the ones who honestly have and need opiates to manage severe pain, are being looked at and treated as guilty of addiction first and questions asked later. Or being denied accessibility altogether. I for one can literally only go without opiate pain meds for less than 1 day before severe intense pain takes over my lower spine so intense that I will not be able to have any activity short of torture, including being so bad sleep will not come until complete exhaustion from fighting the pain takes over. There is so much worry these days, thankfully, that veterans are committing suicide because of frustrations with healthcare including access/denial of pain meds. Not taking anything away from them, I wish the same attention to those is us who are not addicted but rely on opiates to keep us human, to keep us functioning members of our families, to keep us from suffering needlessly. I pray our society wakes up and remembers there’s two sides to every story and we need to be considered, and not as abusers.

  82. Laurie Otto at 7:01 am

    This story breaks my heart and makes ZERO sense until the end – follow the money. Very well written. I hoped it wasn’t going to end the way it did – and is everywhere.
    What strikes the real fear in me is this: money “trumps” people (sorry for the unintended pun, it’s the only word I could use to define what hurts the most).
    Many people ARE being given a final “kick your addiction” dose. But some aren’t. Many are not this fortunate and may die as “addicts” because they had an insufficient amount of pain medication on board. Then what?!
    Dying as addicts instead of people with disease is not how I was brought up. I was taught that PEOPLE matter more than – even money.
    What a lie I was taught from my first days in school.
    I hope my friend, currently in minor withdrawal from his sudden reduction in meds that went unnoticed until after he got home, doesn’t see this quite yet. Not until he sees the Dr for his CRPS/RSD prescription refills next week. At least.
    I have two or more stories to submit. But this one is more than enough right now.
    Well wishes and prayers to all who stumble upon this article and comment 🙁

  83. Dinah Gray at 6:24 am

    The exact thing happened to me John…with my dr of the last 17 years. (I have been in chronic pain from arachnoiditis for over 20 years.) Except he, nor anyone in his office, had the guts to tell me face to face. The last time I saw him was for a regularly scheduled office visit. He refilled my RX’s, ordered lab work, & told me to come back in 3 months. And they scheduled a date/time for my next office visit. One week later I got a certified letter in the mail from him & the “medical director” of the clinic where he works informing me that he would no longer be providing my medical care! I, like you, am on A LOT of medication. Why my body requires the amount that it does I don’t know. But it does. The letter then went on to state, “Your medical condition requires that you place yourself under the care of another physician without delay.” That was the 1st week of April 2015. My 2 sisters called EVERY dr in my Medicare Advantage Plan’s provider network. Out of the ones that had working phone #’s, etc, all but one said they weren’t accepting any new patients or they weren’t accepting Medicare patients. The only one who agreed to see me set me an appt for August 2015. From the day I got the letter in April I started weaning myself off of my meds. Enough strong meds at high enough doses that they would normally put one in the hospital & do a,medically supervised withdrawal program. By the time I saw the dr…I was so sick & in so much pain. I weighed 85 lbs (sometimes as low as 81) & couldn’t seem to gain any. This dr refused to put me back on my meds that had helped…& regiment that had been finely crafted & honed over the years. He referred me back to my original pain dr of over a decade. When I finally got to see him, I learned that he was no longer prescribing meds…he was only doing procedures. Anyone surprised?? To top it off, he & my neurosurgeon built & own the spine & joint hospital where all these procedures are done. And they have their radiologists trained to never use the word arachnoiditis when reading MRI test results! He wanted me to get a spinal cord stimulator. I reminded him that I had already had a SCS implant for 8 yrs (tho I only used it for about 6 months). Also told him that ANY further invasive treatment to the back was contraindicated for arachnoiditis! It took my brother (yes, a man) going to talk to him & reiterate that it is a proven fact that only medication helps me…& not procedures & surgeries (of which I’ve had dozens). My pain doc also told my brother that he no longer prescribes medicine. My brother said, “Fine…who does.” And he then told my brother another dr’s name (in a town 40 miles away) who is an internist & pain mgmt doc. He said this doc was not accepting new patients but that he would call him & ask him if he would see me. Long story short, I saw the new doc on 2-29-16 & he reinstated ALL of the meds that I have been on for so long….& yet by then, had been without for almost a year!! One REALLY ROUGH year!!
    Thank you for telling your story & contributing to NPR. If we keep talking & telling, sooner or later somebody HAS to listen!!
    Wishing all who are fighting the fight a low pain day!

  84. Tim Mason at 6:22 am

    “He was told that some of the pills wound up in the hands of someone other than the patient and for that reason he is now under investigation.”
    This is the problem. “a patient selling, giving his or her bottle with the patient name on it will get dispatched from any Pain Management facility. It is one of the TOP exit strategies. Almost as bad as testing positive for a scheduled I substance.
    Dr. Shani probably should have put this man on Fentanyl several years ago.
    He got dismissed by no fault of his own.
    Perhaps the Pain Doctor did not have the funds to increase staff enough to cross all the T’s and chose a practice which is growing due the system catching all the fakers that try and trick some doctors.
    It is a shame there is no where for John to go locally for treatment.

  85. Linda Cheek at 5:36 am

    People with chronic pain need to learn the REAL cause of drug abuse from my webinars or DVD’s so they can inform their congressmen that this attack on pain meds is wrong and won’t get us anywhere in the fight against addiction. But the government is all in these attacks because of the money. Attacks on doctors for prescribing is actually illegal, as we were exempted by the Controlled Substance Act. But illegality has become the norm with our government agencies. The people need to learn the truth and stop convicting doctors going to trial. When the gravy train is halted, the government will admit to the error of their ways. As long as there is money in what they are doing, they will keep on. My next webinar on the REAL Cause of Drug Abuse will be on Tuesday, Nov 1 at 8:00PM EST. Get the directions for joining on the homepage of my website http://www.doctorsofcourage.org.

  86. S Imperatore at 5:10 am

    I understand your pain & plight, John. I am in somewhat the same situation as your story tells. We are being manipulated and need help.

  87. Anne at 3:51 am

    My heart absolutely breaks for you. Your story is almost exactly one year behind mine. The worst time of my entire life began the week before the 4th of July in 2015. My doctor, who had ALWAYS gone above and beyond for me during the past nine years simply became too fearful to treat chronic pain patients AT ALL. I was on a high dose and knew the odds of finding a new doctor were about as good as winning the lotto in Central Alabama-we have no lottery in Alabama.

    I worked out a taper to make my meds last as long as possible, but keep me slightly functional – enough to put every bit of strength I had into finding a new doctor. Over 200 referrals later and no one would even evaluate me – a patient on a stable dose for 6 years, with no instances of aberrant behavior AND a “marked functional improvement” in my docs words. Marked is really an understatement. The difference is like a blustery winter night in Alaska and a gorgeous summer day.

    As I started tapering, I could no longer drive the hand control van I wanted so badly through seven years of riding city buses. The spasms from my dystonia were too uncontrolled. Eventually I wad so jerky I had to be strapped into what ever chair I sat in. As time went on it became clear that I wouldn’t find a new doctor before going through withdrawal at just over 500 morphine equivalents. I had no quality of life at all. I wasn’t going to do anything overt, but I wasn’t going to do anything thing to keep myself going either. I figured the combination of withdrawal from a high dose and not getting fluids or anything else to treat it would be enough.. I found someone to adopt my beloved cat Sissy who had tended to me tirelessly – well I guess she did nap a lot, but she never left my side. My poor baby girl was so upset seeing me like this that she started pulling her fur out and didn’t stop until she looked almost like a hairless cat. September 28 came. This was the day that sweet girl would would be picked up and flown by a volunteer to Minnesota. I have never felt so heartsick in all my life. I had told Sissy goodbye one last time when the volunteer realized he was missing some of her paperwork. As I was looking through my inbox, I found the email that was my saving grace. Early on, I’d had a referral sent to a well-known doctor in California who was still willing to treat high dose patients. I never REALLY expected anything to come of it. Here it was though, a letter stating this doctor would be “glad” to treat me. If I was teary before, I was bawling now. I don’t think I’ve ever felt so relieved or grateful in my entire life. Poor Sissy and the volunteer didn’t know what to make of it until I finally got myself together enough to to explain.

    My troubles weren’t over yet. It took about a month before my appointment. Physically this time was by far the hardest. I was able to stave off the worst of withdrawal by going to a methadone clinic and eventually a palliative care service was willing to help me. Even then I was down to about 35% of my original dose – it because this doctor felt it was too high, but because he was too afraid it would jeopardize his ability to care for his palliative care and hospice patients. A year later I’m thankful for the life I have and terrified of losing it.

    I’m hoping and praying some sort of solution-a pain patient lottery ticket of sorts will come your way. No one should geo through what you are being forced to go through right now. If you’d like to email me, Ed had my permission to give you my email.