My Story:  Pain Clinics are Money Mills

My Story: Pain Clinics are Money Mills

I had a doctor friend tell me that when she was in medical school the loser students chose the field of pain. It was seen as a money-making arena, rarely successful for its patients. Ambitious doctors chose other fields, where they could actually be effective.

A friend was just dumped from her pain clinic for remaining steady on her treatment plan for many years. She has a neck injury, two children and runs her own full-time practice. She found a med that works for her, and has been taking it at a low dose without incident.

Malia Cole

Malia Cole

Dream patient, right? Evidently, no. She doesn’t need expensive, experimental procedures. She isn’t making her pain clinic any real money and they need to make space for patients who need their services (i.e. desperate and have some insurance cash to spend). She is now struggling to find a clinic that will take her. Her life will be turned inside-out if she cannot get the medication she needs.

Pain clinics are failing our community. I’m sure you have heard at least one story about the pill mills, and they certainly exist. But the demonizing story you are likely to hear is too simple and has made things impossible for those of us trying to get real treatment. Many general practitioners no longer prescribe pain medications, they don’t like the liability. So if you have a chronic pain disease, you are sent into the pain clinic system.

Let’s use my experience as an example: I have a condition called Sphincter of Oddi (SOD3). One of my digestive valves is misfiring — closing when it shouldn’t — causing my entire system to back up. It hurts like hell, all day, every day.

I see the top GI specialist in the country and he does not have a cure for me right now. My pain, and its cause, is very different from that of fibromyalgia, RA or a back injury — it is called binary pain. It is rare, but not unheard of. I have been with my pain clinic for almost 2 years now and I still have to explain what SOD is at every appointment.

Without knowing anything about my disease, my pain clinic had a list of recommended treatments for me at my very first appointment: take gabapentin, do physical therapy twice a week in their clinic, and undergo steroid block injections.

I have discovered that this is what they recommend to everyone who comes to them, no matter their diagnosis. I don’t pretend to know why, but I suspect those injections make them a pretty penny. I did each of these things, the injections three times. When the third round made my pain worse, the doctor commented that he hadn’t thought that treatment would work for me!

Along with the expensive treatments, I get a lecture each visit about the horrors of using opioid pain medications. They simply must get me off of the one medication that actually works; the one thing that has kept me out of my bed and enjoying my girls for the last 7 years.

I have told them again and again, that unless they can find something that actually works, I will continue with the medication. However, if the war on drugs is successful at limiting the use if these medications for patients in good standing, it won’t be an option for me much longer.

I rarely see my actual doctor (he is one of the top 25 pain docs in the country), the clinic uses nurse practitioners and assistants to run the day-to-day appointments. I have yet to have an appointment where the nurse has actually read my chart before meeting with me. Every time I have a procedure with my doctor, I have to tell him who I am, and describe my condition and past treatments, while lying face down on the surgical table. They must see thousands of patients a year within their 8 clinic system.

It is a money-making mill, and it is my only hope. Most pain clinics are much like this. If you switch, or doctor shop, too often they decide you are a med seeker and you can no longer get in anywhere. They have us by the balls and they know it, no customer service required.

This is all to say that something has got to change.

Contrary to the guilty-until-proven-guilty way we are treated by our pain doctors, we did not choose to have chronic pain disease and we deserve the same kind, thoughtful treatment given to those with other conditions, like diabetes or heart disease.

Every patient should get an individualized treatment plan based on their actual diagnosis. Doctors should spent time with their patients, actually getting to know them and their potential for drug abuse. The end game should be bringing comfort to people who desperately need it, not filling pockets with cash.

It is time to submit editorials, write to our representatives and advocate for ourselves, or continue to accept things as they are, in quiet desperation.

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Malia Cole lives in Minneapolis, Minnesota with her family. She has a blog on motherhood and chronic pain called Labor Pain.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

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

Authored by: Malia Cole

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After six surgeries ,two non- unions,broken screws in my ankle,my MD got into trouble because his assistant got spun out on Vicodin . He was calling in scripts100with 5 refills ( idiot). So now I’m in left field with no glove. With documented information,it’s all but impossible to get an aspirin! Injections,no problem. Everyone,write to your Dept of Health,in your state,tell him what’s going on. My new MD did suggest that and I did it. Feels great ( probably wont do any good). But you have to try.going slow is different,but change is constant! Adapt,overcome. On low dose of meds( actually works) but never wanted to even try!

Anita C. Spero

To:Anthony Davais
Hello,
I’m in almost your same shoes. But with it I have many severe allergies to sensitives to medications. Over 19 years I have been trialed on so many. The Doctor I found some years ago after giving up knew this. He said “let’s not try any new meds on you till you are financially secure”. I had a cabinet FULL of medication I could not take, but which I paid for.
With that I’ve had injections, physical therapy, MENTAL therapy, copper bracelets, magnets, water therapy, many gimmicks I did out of disparate need for relief.
I have seen several doctors very recently that have no intention on helping me ween off. Even with a heart condition. Once I run out I’m on my own. They will only give me treatments like injections (which just don’t work on me).
I have written what has happened to my life in the last month. I am trying to add it on here. But I have lost almost everything. I can’t make money so my kids will receive no more college. I promised them if they paid for some and their own car I would be paying this month. I still can’t bring myself to tell them they can’t go back. There is more and I have super withdrawal to look forward to very soon.
I do hope someone listens to you. Not just hears you, be listens.
Anita

Anita C. Spero

So I had to see another pain doctor yesterday (this is being forced on me). I went. He SEEMED nice. Explaining that he understood it would take a little while for me to get the funds together to start his TREATMENTS. First being an MRI..
Still not sure why I need one. I called EVERYBODY. I could not find anything I could manage. But I thought”O.k, I’m o.k. I have little time to find one. He said he will give me the medication I take till I can get the funds together”. Just as I was thinking this that Doctor called and said “Did you make your MRI appointment? I said not yet. I am finding it hard to find one. Explaining we don’t qualify for help. We make to much…lol. His voice changed and he got very edgy. He said “WELL, I don’t know if medication is the answer. You probably need other things (I think he meant all kinds of treatments). You should probably go to Cook county. They will do the MRI for 5.00. But I won’t help you with medication till you get it done”. It felt like a bribe in a way. I explained that I am looking hard but need some time. An MRI is not……
He just said “O.k Anita bye-bye, get it done or I won’t help you” and just hung up.

John Quintner, Physician in Pain Medicine

@ Debbie C. It would be inappropriate for me to give you specific advice on your treatment.

However, a major concern with escalating opioid doses and worsening pain is whether the patient has developed opioid-induced hyperalgesia. If so, a dose reduction is called for.

There are highly competent pain specialists in your country, where Pain Medicine has recently been recognized as a distinct speciality. I suggest contacting the ANZ Faculty of Pain Medicine to obtain a list of Fellows who might be able to assist you.

Deb C

@John Qunitner
Thanks John, I have vsiceral pain and proved it wasnt imprinted with the intepleural catheter I had.

1 Is it your view also that pain pumps implanted are nto wise due to complications, and only to be used if at end of life. That’s now what they say here.

2 How do you trial a SCS? How is it placed on the body? I did also read forums where people have had lots of problems with lead migration and infection. what is the percentage there? any idea?

3 I have never seen a pain specialist from downunder participate in an open forum. I am stunned, and pleasantly suprise 🙂

4 What would you consider to be a high dose of fentanyl and oxynorm, when you say escalating dose?

5 Do you have much contact with pain.specialists this side of the tasman?

6 It also appears that opioids are out of flavour of the month here, and that some specialists are very anti it even of they work.

7 Whats your view on ketamine, in teh treatment of pain. I for one for visceral pain have found it excellent, especially used with Fentanyl.

I have been going to 1 pain clinic for 4 yrs now and they closed and I have no where that will help me . I have never had a dirty urine ,signed all paperwork to do what they ask and never never once been dishonest.Now they are saying I’m over medicated. I need my medication just to get going to have some things seem and feel normal. I’m just gonna let them decrease me and I don’t give a rats ass anymore. How dare they play dr’s then play devil……very sad when you are labeled .Like I asked to be raped at 8 ,beaten with a baseball bat across my back at 18, and also hit on the head with a hammer,fibro, new hip,bad knees borderline personalaity etc etc etc .. I’m so tired of being a # and now I’m considered a drug addict and no-one wants to take a new patient who needs medicine not a fix.Thank you for this site.God Bless you all and pray for us all.

Thanks so much for all of these thoughtful responses. I actually trial-ed a spinal stimulator for a week. My pain Doc had little faith that it would work, but required a trial before he would trial a pain pump. The process was difficult and it was not helpful in any way for my kind of pain.

tracy jones

I have RSD for 12 years I had trouble diagnosing my condition for about 8 months then I did get some help but after 4 years my RSD began to spread quickly and to my organs as well after 2 pain clinics more like you described I found a amazing doctor who does care who is not in it for the money as he was a anesthiesiologist who went into pain medicine after a relative of his was living in chronic pain and could not find a doctor to help him so I do have a doctor who will do anything he can to help you and if he is not sure will send you to a doctor who can I have to say that without him I may not be here today as when my RSD spread to my organs my PC would just say must be your RSD well my RSD may of caused this organ to have problems but you should cared enough to send me to a specialist but my PC would just blow me off it is my pain doctor who cared enough to get me help not only myself but my mother as well so remember there are amazing pain doctors there may not be many we also need to make it a priority in medical school to learn some of the real pain diseases out there I know there are many but they should have to at least learn the top 50 or 100 to be able to also know how to treat a person with chronic pain we are not drug abusers we are people who live in pain so bad that we would never wish this on another person but most doctors and nurses treat us horribly I cannot tell you the times I have been so badly because of my pain I was even denied being seen by a neurologist because I am a pain patient even though I needed one because one of my diseases I have now because of my RSD causes seizures so I understand the frustration and I do understand not getting help not from just my RSD but the other diseases it has caused no one wants to believe something else is wrong take my appendix for 7 months I was hurting in my stomach and some down my side went to G.I. doctor who said well really think must just be your RSD I do not think you are having stomach issues well guess what I ended up in hospital with my appendix and when they did surgery my intestines were so infected and swollen hey had to cut me open because they could not see my appendix to remove it then I was in the hospital for 5 days and was on 3 different bags of antibiotic the whole time one of the nurses said I have never seen them give this much antibiotic to someone for there appendix so you see my… Read more »

John Quintner, Physician in Pain Medicine

@ Doc For The People. I share your concerns, having seen a number of people in whom implanted spinal cord stimulators have not helped them at all or have not stood the test of time. However, in specific cases such as those patients experiencing intractable abdominal visceral pain in whom escalating doses of opiate medications are no longer providing relief, a trial of spinal cord stimulation is worthy of consideration. I agree that information on risks versus benefits should be provided to the patient prior to ensure that consent obtained can be truly informed.

Doc ForthePeople

@ John Quintner John, I have concerns about the long term safety of implanted spinal cord stimulators. Specifically, what happens to this foreign object left in the spinal canal for years and years. We know that cardiac stimulators have significant problems with growth of epithelial tissue around leads, migration of leads with perforation of vessels, etc….The spinal canal might be less forgiving of such processes if and when they occur in people. I have asked numerous pain specialists and device company representatives, but I am always met with a blank stare.

The risk of these adverse events may be worth it for the benefit of years of pain relieve, but it seems patients may not be given the full picture for a truly informed consent.

Your thoughts?

Doc Forthe People

John Quintner, Rheumatologist

@ Deb C. The answer to your first question is NO. However, there is enough evidence in the pain medicine literature to support a trial of spinal cord stimulation in patients with intractable abdominal (visceral) pain. The procedure does have an appreciable complication rate (e.g. Infection, migration of leads).

Deb C

@ john Quintner.

John, I was interested in your comments. I too have a rare condition except its not labelled but similiar to SOD with and CP.A few years back pain pumps were all the rage, and I thought that the theory was great less emds less side effects into the body. Now I hear they are no longer flavour of the month and SCS as you identified are. I assume here in NZ that its similiar insurance paying. I am interested in your thoughts on the long term damage of these.? I have considered it after, many surgeries, with many complications eg bilateral throrascipic splnachnicectomy, GB removal , 20 plus ERCPS, EUS, Laparotomy, 3 jtubes and the list goes on. The best results I ever got were from a a hepatciojejunostomy, I am no longer living in a hospital on machines eg pain pumps and feeding tubes, and I got remarkably better until I got a bile leak after a PTC a litre and half was there for 6 days. SO then multiple PTC’s and revision heapticojejunostomy. I also got a no pain repsonse from an interpleural catheter using marcain and another local. injected every 8 hours. I had for 6 weeks, but as you know they arent permanent. On placement of the repeat i got a pleural effusion.

I now am a lot better then before the hepaticojejunostomy, but I didint pass teh 2 year mark with no probelms eg I have increased pain and so either have a stone or another stricture.

They are happy to give me fentanyl and oxynorm in large doses,but are very quick to not get in touch with my wonderful former pain director, who I know was one in a million.

When you have rare conditions, and I know mine and my surgical hsitory is, new doctors want you to prove every diagnosis again, along with pain doctors who treat you the same way. It is very stressful.

Do you knwo of any new treatsments for Pancreatic, biliary motility disorders? What do you think of the SCS, and new pain drugs being developed?

thanks

Carrie Blair

I will be sending my story to the email provided. I WAS a Registered Nurse until I was assaulted by a patient. I started off conservatively however it has been 4 years now and I’ve had 3 back surgeries on my lumbar spine at L5-S1. During that time they have found I now have moderate to severe stenosis at T9-T12 and 3 tumors. I have one tumor where I had my ovary removed, one on my hip, and lastly one that is on, in, around my lung and connected to my chest wall. I live in horrible pain and along with that comes the anxiety stemming from living with the pain. I see a “pain specialist” however he does not know anything about my case after 4 years and will not even attempt to get my pain under control. I’ve tried going to the ER, however I’ve since given up trying there due to the treatment they provide. All I want is to be able to take a shower without help. To have my pain below a 9 out of 10, but I’m treated as if I’m a drug seeker. I’m appalled that I used to be apart of this system. We wouldn’t let an animal suffer, but it’s alright for a chronic pain patient to live in agony.

Peter Emond

Malia,

I could so relate to your article. I care-give for a friend who has SOD3 also, among other issues. On of the other issues introduced us to the world of “pain management.” What a sad situation that office was. Just like you mention in your article, the doctor decried opiods, while not offering a better alternative. He even tried to convince my friend to have Radio Frequency Ablasion, which had he gone through with would have limited his options for the surgical procedure that eventually improved his pain condition significantly. After about 3 visits, we realized how there was no real benefit in seeing this doctor and decided to join on-line support groups and seek other patients who had found successful treatment. The on-line support groups were so much more helpful.

On a personal note about SOD, have you read any of Dr. Peter Melamed’s writings on the topic? My friend is consulting with him and starting to get relief with some of his treatments. Feel free to email me for more info.

John Quintner, Physician in Pain Medicine

@ Malia. Here are some suggestions in random order that I know will not please some of my medical colleagues:

1. That funding agencies cease to fund treatment modalities shown to be of dubious or of no proven benefit. High on my list are “trigger point” injections, facet (zygapophyseal) joint injections (of corticosteroid preparations), epidural injections for spinal pain, and lumbar spinal fusion for spinal pain.

2. In the absence of clinical suspicion of serious spinal disease (i.e. infection or malignancy) CT scans and MRI performed for chronic low back pain NOT be funded. The onus be placed on the clinician to justify the performance of such investigations.

3. That truly inter-disciplinary rehabilitation programs for people in chronic pain DO attract appropriate funding. Currently in Western Australia, insurers much prefer to fund invasive treatment modalities (including implanted spinal cord stimulators) for patients in chronic spinal pain whilst not encouraging such rehabilitation programs. In fact, compensation insurers do not fund any inter-disciplinary rehabilitation at all. They prefer to fund a piece-meal approach whereby each therapist works in his or her own silo.

4. That funding bodies promote consumer education programs that promote non-drug treatment modalities along with the strong message being given that drugs (including opioids) and invasive interventions ALONE are not the answer.

Well, I hope this post will at least encourage people in pain to speak up and be heard.

Thanks to everyone who has shared their experiences here. I am heartbroken to read about so many unbearable stories. I wonder if our Doctors know that we cry hopelessly in our cars in their parking lots? Would it make a difference?

I agree that change needs to begin in accreditation and legislation. I hope that pain patients can be seen as viable, powerful community members and not just seekers. Speaking-up can be scary, but we simply have to.

Many warm wishes and hope for the future.

Anthony Davais

I feel your pain. In 2007 I was diagnosed with Fibromyalgia after a second bout with viral menengitis. My life has changed drastically since. After almost a year of Doctor appointments I finally found some relief with a daily regimen of MS Contin and Norco. Both strong pain killers. My Doctor decided to close her practice and go to work for Providence. I later heard she did it because the DEA is coming down hard on Physicians that are prescribing Narcotics and she was in fear of losing her license. So this left me without a Doctor. I searched and found one, my first appointment I was told that he cannot prescribe me pain meds. But he could refer me to a pain clinic. I went to the pain clinic and was told all they could do is slowly ween me off the Narcotics. I was in shock and worried. I went back to my new Primary Care Doctor and asked him again if there was anything he could do for me, he told me that he put my file in front of a committee and they approved the request to prescribe me Narcotics for the purpose of weening me off of them completely. I am now being forced off of my pain meds, the only thing in my life that actually gave me some relief for a somewhat quality life. I have learned that this is the trend and soon Narcotic pain medications will not be available. I also heard that Walgreens is no longer filling Narcotice prescriptions. I am now so worried about my pain level rising as they ween me off the pain meds. Has anyone else had an experience like this?

dave

Its unfortunate that medicine remains too focused on their own needs and not on their mission to serve the public good. Even after the American pain society and American academy of pain medicine were under investigation for promoting opioids they continue to be wed to pharmacological approaches to pai care- and make little use of the thousands of treatments for pain. And if you disagress with them they may claim since your not a doctor youre not entitled to an opinion about medicine. The public needs to call for a revolution in medicine and pain care- theres too much moral and mental laziness in medicine and pain care. As I live in the only district in the Nation where all my legislators have signed on to legislation to improve pain care I can say I know about walking the walk when it comes to pain care.

Doc ForthePeople

Excellent article, Malia. I have talked to several former patients who say they are simply suffering since I retired because they cannot find a doctor to treat their chronic pain, especially if it arises from a work injury. Many have been offered injections but have refused. Many have had them in the past without benefit, but for chronic pain patients the shot mills seem to ignore the first basics of the patient evaluation: history of the present illness and past medical history.

There is another parallel driving force behind the growth of the shot mills that is not seen by the general public: the force of regulatory factors from federal and state agencies. First the DEA has targeted doctors based on quantity of pills prescribed, without regard to who the patients are. Any doctor who has a large number of opioid dependent patients, even if they have legitimate needs and have been on stable doses for years, is subject to investigation. Second, at least in my state the state medical board holds the injectionists in highest esteem. It seems to me that not a single injectionist has been sanctioned for ignoring patient history and coercing pain patients into further unnecessary and ineffective shots.

So the bottom line is that the shot jocks not only get lots of money for doing shots, they get the added bonus of being effectively immune from regulatory oversight. That is a huge factor for doctors who have literally become afraid to prescribe opioids even if they are the most appropriate medications.

John has commented about pain certification in his area. I have talked to other docs and younger residents in training. <Many report that the only reason they want the certification is to get automatic approval to get insurance reimbursement for doing the injections. So at least in the US, for newer injectionists, Pain Specialty Certification does not seem to include a compassionate and scientific approach to the person suffering chronic pain. It is however, a free ticket to enhanced financial rewards for doing more injections, necessary or not, effective or not.

denise smith

I too go to a pain clinic. It is my 3rd one to go to as my PM will NOT help me…now he does others in his practice (i have a neighbor who uses him and he gives her too much i think she wears 3 fentynol patches at a time suppose to be one and she takes 4 percocet 10mg each day. plus neurotin zanaflex, flexeril and there is one more but i dont remember it) no i have been to 3 clinics and this is the reasons why. The first one i left because he was giving me oooooo medicine, i was taking oxycotin and hydrocotin, neurotin, zanaflex *at nite to sleep* i felt like i had to much I just would get so drugged up i was afraid to drive my children at the time who were 2 and 5., now they are 11 and 14 and I left the last one becase the dr actually accused me of selling my meds !!! said i wasnt sick. ai had been seeing him for over 5yrs he had me on oxy 80 mg, fentynol so now im at the last clinic in our town, they treat me like a child and watch me like a criminal. I have never failed a UA, and I started chropractice. I have had so many steriod shots, many ablations, i have a spinal implant, i have had one hip replaced and knew on same leg operated on and will need that replaced along with the left hip and knee replaced. All are very expenisive. I have been run through the mill. what IS a person suppose to DO???

Brooke

Unfortunately, this story is so very true. I also suffer from SOD pain. I had surgery to “permanently” correct the problem. A few months after I was still experiencing pancreatic pain. If you don’t know what pancreatic pain feels like, imagine the worst throbbing toothache, but in your gut. I sought help from a pain management center. The D.O. refused to prescribe me pain medication but tried to push a nerve stimulator on me. I would have to have another operation–this time on my spine and wires inserted. I said absolutely not. I just came off the heels of a major abdominal surgery, a bacterial sepsis infection, and a month long hospital stay. As a result of that infection, I have something called fluoroquinolone toxicity–a reaction to the antibiotic Levaquin that has left me with chronic nerve and tendon pain. I suffered through the pancreatic pain, thinking everyday about driving off a bridge. The pain was THAT bad. With time, the pancreatic pain has improved, thanks to the surgery I had. However, the nerve and tendon pain is unbearable. I am severely depressed and can barely sleep at night. I went to a different pain doctor who said I needed to take double the Neurontin I was on. I told him that still didn’t help with my tendon pain. He said he couldn’t help me. Really? You actually call yourself a pain management doctor? So, I tried to seek help from my primary care doctor. The only solution he will even consider is trying me on Cymbalta. I am already on another anti-depressant, Remeron, and there is a major risk of serotonin syndrome. I can barely lift my 2 year old son out of his crib or do simple tasks. You literally have to be dying to get pain medication in the U.S. I hope these pain management doctors go out of business! I know of several people on Facebook chronic pain support groups who have committed suicide because they couldn’t get pain medication.

John Quintner, Physician in Pain Medicine

@ Malia. My heart sank when I read of your experience. Your personal opinion that “pain clinics are failing our community” needs to be taken very seriously.

In Australia and New Zealand, Pain Medicine is now a fully accredited medical speciality that can pride itself on the high academic standards of training it provides for its Fellows.

But there is still much to do to ensure that, in your words, “every patient should get an individualized treatment plan based on their actual diagnosis. Doctors should spend time with their patients, actually getting to know them and their potential for drug abuse.” The “one size fits all” approach has never worked!

It sounds to me that pain management in North America is on a “runaway train” that is getting very close to a derailment of major proportions. The question is how to stop this train and allow everyone who is on board to get off and think seriously about its ultimate destination.