The Pain Patient Experience – Every Case Is Unique

The Pain Patient Experience – Every Case Is Unique

When you talk about the top pain physicians in the United States, Dr. Sean Mackey of Stanford usually makes the list.

He is the Redlich Professor and Chief of the Division of Pain Medicine at Stanford University School of Medicine. He is Director of the Stanford Systems Neuroscience and Pain Lab and has additional appointments in the Departments of Anesthesiology, Perioperative, and Pain Medicine, Neurosciences and Neurology.

He has been consistently saying over the past several years that we need a revolution to change how we think about pain—that it’s not a one size fits all issue and each patient experience is unique.

So when he took to Twitter this week to talk about a patient they had recently treated at Stanford, we felt it was strong enough to simply include in this piece.

Here is what he said:

I’d like to share this brief story about a patient who’s currently taking opioids.

We’ve been treating a patient at Stanford who has a lower extremity injury. He came to us on high-doses of opioids through fentanyl patches. His primary care doctor wanted him weaned off. He has tried every treatment imaginable.

Our pain center is multidisciplinary, so we had a team conference to discuss his particular case. He was seen be a physician, a pain psychologist, and a physical therapist. There was a lot of debate around what to do.

The team concluded after a long conference that this patient is a functioning member of society and is doing everything that’s been asked of him. Every time he’s tried weaning down (three times), he’s had to quit work.

So, the recommendation was to not change anything.

The lesson: we cannot generalize these tools (i.e. opioids) and make broad statements across everybody. For some people, opioids will lead to major problems. On the other end of the spectrum, there are people who will benefit greatly from the use of opioids for managing pain.

Given the polarized view of opioids, we hope stories like this will continue to bring awareness to this incredibly nuanced issue. As with many issues we face, this is not black and white. I am not pro-opioid or anti-opioid. I am pro-patient.”

To follow Dr. Mackey on Twitter @DrSeanMackey

To follow National Pain Report on Twitter @NatPainReport

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Authored by: Ed Coghlan

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So happy that some rare doctors understand that for some, pain meds are necessary. Not everyone is an addict. Some people REALLY NEED HELP. I have suffered from neurofibromas since I was 12. They grow on the right femoral nerve path and are primarily on the sensory nerves. The pain is sharp and electric. Like biting on a piece of aluminum foil. I’ve had at least 15 surgeries to remove them. They grow like a string of beads along the nerves. I have walked the floor so many nights because the pain was so disturbing to sleep. Nevertheless I worked all my life sometimes multiple jobs at once. I’m 66 now and have some tumors that actually show thru my clothing. Drs are hesitant to remove them for fear of additional damage to the nerves. My primary care physician took me off ALL pain meds!! I am in so much pain now and I NEED help! My quality of life is shrouded in pain. This is no way for anyone to live. At least with the meds I could function.

First, thank you to Cindy Perlin’s suggestion in the comments above that Calmare Therapy, a drug-free pain management alternative, may very well reduce this patient’s neuropathy. I’ve been using scrambler therapy for medication-resistant chronic pain patients since 2011. The patient outcomes have literally inspired me to delay my retirement! I continue to hope and pray that our pain management partners focus on drug-free options to manage and reduce chronic nerve pain.

Debra I’m so sorry this happened to you. Bless your heart. I’ve had my current doctor for 10 years now and sometimes forget about the others before him. I love everyone and I do mean everyone. I find a way but I absolutely hated doctors. The places I left hearing no pain, no gain! Wondering if I could see to drive through the tears, wondering if I could drive with the pain to get home. I’m not one that easily gives up so I went on a journey of asking everyone I knew to pray and to ask everyone they knew to please pray also that I get a physician that truly cared, one with a heart if there was such a thing. The way I had been treated was nothing short of a horror story. A couple months later I called in to verify my appointment and was told my doctor had transferred, I could choose any physician there. I didn’t know anyone. I knew I couldn’t stand who I had. The young lady on the phone told me who she would choose if she were me. I thought, here we go again. This was an answered prayer though I was still leery and thankfully so wrong. Here was someone who was real. Someone with a heart and a soul. Someone you just knew truly cared. That was in 2009 and of course you know the rest of the story. May God bless you Debra, I pray with faith He sends you your miracle. I continue to pray with faith He send the rest of us miracles as well. 💞

dis may

By the time I started second grade, I was 6 years old, I developed an identity designed to protect me from bullying and keep me at a safe remove from peers, and everyone else. I was an artist (and I still am). Kids liked my art work. So I was the class artist. I did no homework. In first grade my grades were all 98s and 99s. But I sensed this could be a problem. I never did homework again. My parents were both alcoholics, abusive, negligent; I could not have kids to my house. The house was a mess. I played outside or at other kid’s homes.
But there are other differences. I am a redhead. I have an IQ over 163. I have perceptual differences. Both Freud and Pavlov thought there were two different species of human based upon these differences. There is knowledge of this and some science but it is wrong. I call it ‘perception of the gestalt. If anything in the overall scheme of things is off, I immediately sense it. My grandparents had a factory where I worked starting age 15. One day, eg, I walked onto the third floor and smelled smoke. No one else smelled it. I told the foreman “I smell smoke. We are going to find the fire.” We walked around the floor together until I stopped and pointed to a spot on the wall: “It’s there.” No one could see a thing. I told him to take down the wall. There was a blown fuse and smoke where I’d pointed.
People like me get sicker sooner and die younger. Genetic expression of immune function and inflammation is the opposite in abused children. I cant take OTC meds due to IBD. The red hair: very little is known about this mutation. Not only is pain experienced differently, medications metabolize differently. Its a mess. I have many chronic diseases & chronic pain. I strength train, upholster furniture, stay strong. I have dry eye, mouth & skin. I’m in pain and withdrawal every week. I feel myself dying in the cells of my body. Chronic pain’s purpose is to kill. I live to work & I cant work in pain. I wish I had this doctor.

Rosalind Rivera

We already know this! You don’t have to be a rocket scientist to figure this out! My question! How is this supposed to help us that are victims of chronic and intractable pain and those that have enacted the vicious and uncaring statues under which we!are treated by our pain management doctors
Just let his week, I was turned away by my pain management doctor because of a snafu in my insurance. The receptionist answer was that I had to pay, out of pocket, $ 150.00 if I wanted to pick up my prescription and an additional $ 800.00+ if I still wanted the Ablation which I do desperately need, done. Meanwhile, as of the first of November, the same doctor is back on my insurance. Right now, for a month, I have no doctor. By the way, I once told this doctor that nobody cared and his response was, “ I care!”

I have read articles about Sean Mackey and have watched his videos. I so wish I could be his patient. He is the only one who seems to have any logical thinking along with all his other credentials. I do agree there needs to be a revolution. If we do not all gather up and fight as a huge group then our rights will continue to be taken away. I wish we could do the Million Man and woman March to the White House. Most of us will have to use wheelchairs and have buses haul bus in. We need pictures of those who committed suicides we need banners that’s a don’t punish innocent. We need masses of people to pull together. Think about Martin Luther King because this is a civil rights issue as well.

Claudia

Thank you Ed.. This Doctor knows what he is talking about .. Less is better I guess ..i explained to my PM w new chronic pain new. Injuries how IDK ..thus ARTHRITIS kicks my ads new problems w back no one will do surgery T 11 12 L4 L5 S1 NOW already had multiple back neck surgeries ..i got back for breakfast I’d pop 3 norco .. But as he explained ..that I have to spread them out like 1 and so on 5 per day k cool so I did … And he is right .i have been on the same over 5 years DOES not matter .. Plus PT made me worse omg I quit after 2 months now my left hip but I fight I use my coping skills see a pain physiologist she is AMAZING .. Thank you Ed

Hi Terri, not all doctors are so upstanding. My former pain doctor whom I fired after he took my medication tried to make me look like a drug seeker later. He lied about a lot of things. He has no scruples. He is hiding behind Patient Relations. I have not been told what exactly was done because they did it behind my back. It was being hinted to me that he was trying to make me look like a drug seeker, trying to get me banned from the clinics, lambasted because I called his office for help during the eight days he left me without treatment, for missing an appointment because we had a two day blizzard non- stop, just to name a few.
I am not going to let him do those things to me. Have not filed with the medical board yet. I am not the only person abused by this doctor. It will soon be eight months since I have lost all treatment and I have not been notified in any way about what went on with this doctor.

Researcher:the state of PM

Why aren’t suicides being counted? Why are suicides being counted as OD’s? I read ” Sr. Citizens the new victims in opioid crisis” 7 Sr. Citizen’s OD’ed in 10 days in a small TN co. Why is the media lying about…..everything? Why aren’t CPP’s getting proper media coverage? Why are US Soldiers watching poppy fields? (See on YT, & not Geraldo’s, where they speak to poppy farmers). Then read Agenda 21. DEPOPULATION for SUSTAINABILITY. The US is leading. But how? Who would they get rid of first? Who did Hitler get rid of first? Who makes the laws? Who enforces them? (Not the CDC)
Food for thought. In the end it will all be OK. Light, love, & hope,

Researcher:the state of PM

Check out Dr. Forrest Tennant, the leading Intractable Pain Dr. In the US, who worked for the DEA, NFL & many other’s on addiction. At 81 he refused to retire ” my patients have nowhere to go”. He refused to cut their meds & publicly said so. (YT video).
1 mo later the DEA raided his home & office, he was interviewed with tears in his eyes saying ” I took a Oath. I take that Oath seriously. The suicide rate among CPP’s is rising. I don’t know what will happen to my patients”.
As a 82 yr old Dr., he couldn’t believe the US Gov was telling him he didn’t know what was best for his patients.
And he knew it wasn’t about addiction, he was a specialist in addiction & screening patients.
So why IS the Gov “cracking down on Dr.s & Pharmacist’s” as a Dr. told me last week? I know.
Why isn’t anyone reporting on it? I know. Follow the money…not this time. Follow the Gov.
Light & Love to all.

American

I wanna join Mark but hey I’m opioid free America and when you read your morning headlines you’ll see the overall morphine milligram equivalent count reduced and you can have this false sense of feeling that the opioid crisis is turning around and know that I and so many others are needlessly suffering with no quality of life chair and bed bound so that you may do so instead of realizing that it’s venturing further into one!

Thomas Kidd

I can only see my doctor(?) Once a year so they can ignore my worsening pain. This is most evil. And wicked. The Great Judge will bring them to judgment and all their excuses will be as a vapor.

Gail Honadle

My PCP doesn’t share these same thoughts, it’s 1 size fits all. NO PAIN MEDS. I’m facing Rotator Cuff surgery as soon as I get the report to take to my Ortho, and my index finger still needs fixing as it does not bend at the middle joint, the Thumb surgery cast damaged the nerves in my wrist. And that left the R. Index finger with a big bent first joint, and a frozen middle one.

18 Pounds of Fentanyl Seized in Southern California—Enough to Make 4 Million Lethal Doses https://www.theepochtimes.com/18-pounds-of-fentanyl-seized-in-southern-california-enough-to-make-4-million-lethal-doses_3123642.html

Stephen Powers

I know that doctors are so scared they will get in trouble or lose their licenses if they prescribe what is needed for pain patients. My pharmacists pulled me to side to talk to me last week. He told me the DEA had pulled my records due to pain meds, muscle relaxers. He had to write down all the many surgeries I have had and it was a lot – 5 spine surgeries, 1 major reconstructive low back fusion where surgeon told me plenty of times I will never understand how you are able to walk, I saw the X-Rays and I spoke before he did saying ole my this is bad and he said yes, he checked my reflexes in both legs 3 times and would use that small rubber hammer hitting from knee down on both legs – no reflexes at all, I mean he hit harder each time and I felt no pain. I had neck fusion in 2004 from C3 to C5 then had neck fused from C2 to T2 in 2016 but the surgeon had my MRI on 4, 2013. He had just opened 2 brand new office with neurosurgeon who does spine injections all day long, he ran me threw 2 PA’s who did not even examinee me and first thing out of their mouths where going to do 3 steroid injections and told first one no and why as my neck was pulled to left and down, it was locked, she walked out red face and never came back. PA #2 said 3 injections and told him know as I was suppose to she surgeon. He got surgeon and he checked me out and said this is not good then walked to MRI from 4,2013 and said I must operate asap. Had to get heart stress test and got 2 stents and had to wait another year. could not control right arm, left was not good plus had thin bone digging in spine, same as low back was. All that damage, nerve root two from 11, 2012 to &, 2016 when he fused neck to upper back. Talk about pain and my doc had to keep going up on pain meds. It work to get out of bed, can’t turn head and when I do more pain, low back to. Life is a struggle, have to sit in chair that keeps posture right. Riding in care makes low back hurt and the little driving I do, neck pain.

Katie Olmstead

It’s a sad day when something like this, which is simply good common sense, feels revolutionary. I am lucky that my PCP treats me, and everyone, as individuals. And my pain doc is trying everything he can think of, even if nothing helps. No one is telling me to give up my pain meds. They tell me to keep doing all I can and take meds in order to live my life as best I can.

Denise Morris

Thank you, Dr. Mackey and team.

Robert

The real difficulty today is finding a Physician willing to treat with opioid pain medication. I was finally able to locate one, but it took almost 9 months and for that, I am truly grateful. Now there seems to be yet another problem to deal with, substandard medication coming from India and China.

I have been using Oxycodone for over 12 years and have found it effective without the need to increase the dosage. I have utilized several generic brands over the years, noting the effectiveness of some over others. Recently however, I found they simply do not work. I’ve been telling my wife I feel as though they were sugar pills. Their effectiveness seemed to drop 80% + of my previous prescriptions, trying both KVK and Epic brands. I actually wanted to hire a chemist to analyze the contents to see if they still contained any Oxycodone at all! I can across these comments on Drugs.com and now find, I’M NOT THE ONLY ONE. It would seem that our government has found a new way to torture the survivors of the infamous CDC guidelines.

M W

Thank you for sharing this in hopes doctors and govt agencies will listen!

Ruby Gamero

@Patricia Bradley omg I agree with you no one in the Kaiser physicians cares. I have to be calling my self to the point I gave up and from going through severe painful episodes “paralyzation” and being late to work and dealing with works stressful negligence and not offering any accommodation I have gotten to where now I have a tare, L4, L5 now I’m on S1 which is so painful when I get my menstrual and it I stiff up. I’m so exhausted. April 28 2018 I was a passenger in a car accident and till now Kaiser has not bother to check in on me or figure out why I have missed my appointment. They just dont care if I ask for norcos cause that’s all i could take for my Lumbar degenerative disease they get mad and dont want to prescribe them I dont ask every month due to those dam norcos dont help me it last only 30 minutes and I cant take them at work. I’m so tired this has taken a tole out of my life since 2017 and It started out of no where at work and overnight it hit me hard. I have isolated my self, I dont socialize with no one no more, it has drained me enormously and I just keep to my self.

Holly

Nothing is changing…..I was just cut back AGAIN with more coming. I believe my spine is collapsing. I cannot take it much more as so many of us!!!!!

I don’ t think that any pain patient who is benefiting from opioids should be forced off of them. I also have a lot of respect for Dr. Mackey and the Stanford Pain Management Program.They have helped many patients reduce their pain and live higher quality lives. I have met Beth Darnell, their pain psychologist, heard her speak and read some of her writings, and she is terrific. At the same time, Stanford is using a limited number of tools compared to what is currently available. This patient might benefit from Calmare scrambler therapy, which has eliminated pain for many severe, chronic pain patients with peripheral neuropathy, CRPS and many other intractable pain problems (see https://www.paintreatmentdirectory.com/posts/new-nerve-pain-therapy-fast-safe-powerful-relief-3251). This patient might also benefit from neurofeedback, which helps with central sensitization (see https://www.paintreatmentdirectory.com/inspiring-stories/pat-healed-low-back-pain-from-traumatic-injury-with-neurofeedback-3192) or low level laser therapy (see https://www.paintreatmentdirectory.com/posts/can-light-heal-pain-405). This patient might also benefit from medical marijuana, which is legal in California where Stanford is located but Stanford is restricted from recommending it because they receive federal funds. Many pain patients who switch to medical marijuana report better pain relief with fewer side effects than when they were on opioids (see https://www.paintreatmentdirectory.com/posts/marijuana-vs-opioids-for-pain-420).

Yes, every pain patient should be treated as an individual. I would add that every pain patient should have affordable access to all of the therapies that might benefit them.

Patricia Hubert

Kudos for practicing medicine as it should be practiced–with the patient at the center of the team. It takes courage to do the right thing and it sounds like that’s what you did. Others should follow and not be intimidated by the “guidelines”. Thank you,
Patricia Hubert

Laurie

The US medical system is a sham; it’s crumbling around us.
I finally found a neurologist to inject Botox into my spasming muscles and, today., I find out I can’t even GET the injection for another 2 months!
I’ve also been kicked off my Clonazpam, so that means I will have a hard time sleeping. Sleep is the ONLY thing I have left to manage my pain and now, based on mere rumors, they are willynilly denying me THAT too- WITHOUT supervision. I’ve tapered myself down to 1 mg for nap and night and that’s ALL I’m asking for.
My refills expired with TWO refill still on the prescription…I think that proves I’m no junkie with these OR my Vicodin I’ve also been taking with no problems for nearly 30 years.
Still trying to find a primary too.
What the hell is happening to us/US??????
Doctors are running on rumors now, not even lousy biased studies.
AmIright?
AGGGHrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!!!!!

Dearest Marl, I’m pretty much there as well, but I sorta don’t want to give the @$$$es the satisfaction of killing me

Stacey Fields

While this article is positive and EVERY doctor should be pro-patient I have no desire to have a psychiatrist involved in my care, I believe this has been a goal from the start to make us see psychiatrist, at the last HHS meeting one woman stood up and said “There is no money in pain psychiatry so if doctors would make their patients see one of them before any surgery it would help” this said it all! This is hugely about $$$ and filling the psychiatric industries pockets! The next step will be forcing us to see one of them causing even more financial hardship for patients who are struggling many times already to pay the medical bills! Make NO mistake this IS very much about the almighty $$$! It is disgusting to me that America is doing this at all, psychiatric drugs kill more than 45,000 yearly where is the crisis for that?

Denise Bault

Pro patient! YAY! It’s about time…

Patricia Bradley

Unfortunately the Dr’s ive had to deal with don’t share these opinions..they are still treating people as one size fits all and that means no opiates. Many of us have found ourselves basically crippled. .no longer able to function and no matter the amount of evidence that we benifit from opiate treatment no one cares.

mark

I’m pain is so bad now I want to just die to end this miserable life.
I just can’t take it anymore (PERIOD)

Michael Kastner

I am so pleased to see this article and more so Dr. Mackey’s well informed statements which clearly state and prove that there is not a one cure all for pain patients. His brilliance and education give great hopes for us Sufferers.
Being not pro-opiate, and not anti-opiate certainly clearly shows that his experience with pain patients indicates each one of us need specialized care.
Indeed multi modality treatment will prove to be the best results for most, yet that the use of opioid and other medications is not only necessary but mandatory to ensure some quality of life for all.
Pain cannot be seen. Pain can truly not even be measured. Often no clear diagnosis as to the cause of pain can be found. Not yet, anyway.
It is these open minded, educated medical professionals that keep hope alive and help Sufferers to lead the best lives possible.
Politics, insurance, and law enforcement are in no way qualified to regulate treatment for any type of patient care. It is ludicrous to think so and even a travesty to see the power gained by the unqualified in dictating the medical needs of pain sufferers and other inflicted persons. It is not like anyone grows up wanting to be an opioid dependent person. There are horrible side effects and chastising by most, just because our pain cannot be “seen” and we are more often than not accused of being addicts, too lazy to work, and other unkind and untrue accusations.
If all of the moneys being spent on the “opioid crisis” were spent on addiction intervention then perhaps we would see a decline in overdose statistics.
Now that the learned Dr. Mackey has come forth I hope other medical professionals will follow in strategies to ensure helping Sufferers as opposed to those trying to dictate patient care for political gain. It is Unbelievable. It has created endless suicides and needless suffering to those needing medical help.
Thank you Dr. Mackey.

“Pro-Patient.” What a novel way to practice medicine. Those in govt positions apparently haven’t caught on to that concept yet. I guess none of them has ever BEEN a patient before. Someday perhaps. Someday.

Lynne Pendleton

Unfortunately there aren’t many Dr. Mackey’s out there, sure wish there were more like him! I only get to see my pain doctor once a year, the rest of my appointments are with many different PA’s within his office which I believe is done purposely so you can’t really ask about changing the dosage that they lowered drastically when the CDC guidelines first came out. I tried to discuss it with my doctor at my once a year appointment but he ignored me and left the room before I could press the issue.
There definitely needs to be more Dr. Mackey’s!!

Good for this team of Physicians! We have other doctors out here that feel the same way. I know mine did although I also know that was back in 2016. That summer was and still is like a never-ending nightmare. I remember I set there and just cried thinking how am I going to live life to a somewhat normal existence now?? They were all forced to do what they did. They have families and studied long and hard to get their medical degrees. They were doing what they were told by our government. We all see now it’s either do; or pay the price! Unfortunately many doctors have already paid the price and all of the chronic pain patients continue to do the same. Yet here we set years later still talking about it. Nothing we’ve done so far has made a difference…