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

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

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Tim Mason

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,

Tim Mason

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.

William P Isham

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

(https://www.surveymonkey.com/r/reportpainmanagement_prescribing)

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.

Thanks!

Jean Price

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.

Carla Cheshire

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.

Jean Price

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!

Christina

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..

MichaelL

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.

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

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

Chris

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.

http://drcarlhart.com/asap-yams-opiod-use-public-health/

Dr Carl Hart PhD

Columbia University

Christina

John
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…

Tim Mason

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.

JoDawn

((((((((Hug)))))))
Hang in there. Praying for you.

Debra E McDonald

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.

Carla Cheshire

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.

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.

Thanks,

John S

William Isham

I’m in New Mexico.

MichaelL

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!

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

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.

Thanks,

John S

David

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

William Isham

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.

Tim Mason

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.

William Isham

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.

Please keep me posted. My email is kathyovercast57@gmail.com

keith thomas

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.👍

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!!!!

RAE to Carla/Kathy

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!

Lee Bolin

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.

Debra E McDonald

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.

Tim Mason

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.

Carla Cheshire

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:
cheshirecat2@yahoo.com

Jack Earl

John, email me at jack@jackearl.com

"Rae"

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!!!

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

Tim Mason

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.

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

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

Laurie Otto

Touché

My letter to a candidate:

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:

http://nationalpainreport.com/opinion-people-are-dying-and-the-government-is-lying-8831530.html

http://nationalpainreport.com/15-years-with-my-pain-dr-and-my-last-appointment-became-my-final-appointment-8831814.html

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.

Carolyn Peters

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.

William Isham

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?

Andi M-Randall

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.

christine taylor

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.

Terri Lewis PhD

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?

Patricia

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….!

Dooney

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.