The following is a string of letters sent by Larry Gordon and his family in order to lobby stakeholders on the difficulties of his wife Wendy Morgan and Oregon’s chronic pain patients. These letters were compiled by Tarbell contributor Art Levine.

Here’s a letter Larry Gordon sent to a local newspaper on January 30, 2019. Gordon said he never heard back:

 

My name is Larry Gordon and I was at the Don't Punish Pain rally in Salem yesterday. I talked with Anna Reed your photographer and explained the need for the press to hear the chronic patients side of the opioid epidemic story. The untold stories of suffering, torture and deaths of innocent people. She gave me her card and recommended I email you. Here is our story:

My wife Wendy and I have been married 41 years. We're both life long Oregonians and live in Turner. In 1989 we were just like most Americans. We were healthy, athletic, we both had good jobs, a large social circle of family and friends. We had recently  bought our 1st home, started a family with 2 beautiful children. Wendy was room mom, team mom, member of the board at the local pool and our future looked very bright.

   Things changed radically later that year, I could speak for hours about the horrors, the pain and tears as our world fell to pieces. The bottom line, the next 3 years were an endless barrage of MRI's, spinal taps, medications, Dr. appointments, 2 botched neck surgeries, a diagnosis of multiple sclerosis and the discovery of a large spinal cord lesion at the base of her brain. She was in constant unrelenting pain that only got worse over time. By 2000 her symptoms were so debilitating she could no longer work, by 2002 she was completely disabled and put on SSDI, this really added to her depression. A once strong proud wife and mother was reduced to a fragile painful shell of her former self. Unable to lift more than 10 lbs, walk for any distance or do any of the many daily activities mothers usually do for their family. We struggled for the next 2 years and her condition deteriorated and the pain intensified. We were seeing a pain and rehab specialist. We tried everything they could think of, nerve blocks, yoga therapy, pool therapy, steroids, injections, acupuncture, meditation and every kind of anti depressant and pain killer they could think of, but nothing worked. Eventually her pain specialist tried methadone in 2004. It worked, it didn't eliminate her pain, but made it manageable. Her primary care doctor took over prescribing the methadone and for the 1st time in years we were not seeing pain specialists. For the next 12 years she was stabilized, functional, and had some quality of life. She was the ultimate compliant patient which is well documented, had no history of abuse, she simply did exactly as her doctors told her.

       Fast forward to 2016, CDC guidelines and the opioid epidemic. Her primary care doctor of decades, the one who knew her situation intimately, told her it was now against clinic policy for him to prescribe any opioids. He told her he didn't  think he should be her doctor. We were stunned as he explained, even though, in his medical opinion opioid taper would cause potential harm and he was totally against it, he felt he had no choice in the matter. We asked to be referred back to the pain specialist who originally prescribed the methadone. They wouldn't even give her an appointment, stating in a letter "We are unable to help you with the problem for which your were referred".  Her primary care doctor all but abandoned her and refused to write any more prescriptions, he gave no option but to go see an anesthesiologist he had chosen. The anesthesiologist re-diagnosed her during our 1st visit with chronic back pain and fibromyalgia  (something she has never had), his recommended treatment: opioid taper. There was no discussion of her medical history, her MS, her spinal cord injury, the botched surgeries or pain level. No discussion about benefit or effectiveness of her current pain regimen.  When she tried to ask questions about her options and tried to explain her fears and anxieties, she was cut short and told she didn't get a say in the matter and her opinion was irrelevant because she's not the expert. He said "the CDC has made it clear what a doctor can and can't do. He then force tapered against her will off all methadone.

   After struggling through withdrawal, the pain returned, constant, unending, 24-7. She was in very serious emotional and physical distress. We explained this to the doctor at every appointment but it fell on deaf ears, he saw she was physically diminished but didn't want to hear about it. She didn't sleep for over 14 months, she lost 40% of her body weight, lost most of her muscle tone due to inactivity trying not to move to avoid the pain. All clear symptoms of undertreated pain. Her MS was more active now than it had been in the last 20 years, and she was losing her ability to walk. She spent her days laying on the floor or sitting in a chair for short periods of time. She was constantly in tears, totally depressed, emotional, with zero quality of life, no one to turn to for help and no hope for the future. There were no more visits to see the grandchildren or to have lunch with them at school, no more going to their games or recitals. No more family BBQ's or vacations, holidays were now nightmares we had to somehow find a way to get through. We searched for months for another doctor, going through almost a dozen, all said they were accepting new patients, but all refused to accept any chronic pain patients.

  The patient is not the only one who suffers under these horrible conditions. This has devastated my whole family, its hard to watch your wife being slowly tortured this way and being  totally helpless, unable to do anything for her or find anyone to help, just watch her laying on the floor, unable to sit for more than 20 minutes, day after day after day and all night long, it was surreal. How can this happen in America? Our children and grand children were horrified at her physical condition and couldn't believe doctors refuse to help with something so obviously wrong.

  June of 2018 we had finally exhausted any hope that things would get better. We had written letters and made phone calls to every politician and organization we could think of, always the same result, sorry there's nothing we can do, you can't fight the government. Wendy was done, suicide was now our only realistic option. I agreed and we discussed doing it together. And in a strange way it was wonderful feeling, a moment of pure clarity, a relief we had both longed for the past year and half. I think its safe to say most people have never gotten to that point and there's no way to describe it, you have to be there.

  Imagine taking your children aside one at a time and explaining to them as I did that their mother is going to take her own life and it could be very soon, the constant pain is just too much for her. I told them to prepare themselves and figure out how they wanted to tell our grandchildren. It was incredibly hard, but I truly thought it was for the best.

  We were extremely lucky and thanks to members of the Oregon Pain Action Group we found a doctor in Portland just days before she planned suicide.

  We are the collateral damage of the CDC's effort to control the opioid epidemic. Hundreds of untold stories of innocent, hurt and broken people, being tortured and committing suicide. We are desperately begging for help, but there is no one that can help us and our cries go unheard. The press is our only hope. You wouldn't think this could happen in America, doctors abandoning their most needy patients for fear of government retribution. It's clearly wrong, inhumane, unethical and immoral and many doctors, nurses, specialists, and psychologists all agree, but their voices aren't being heard over the powerful roar of government and media coverage of the opioid epidemic. If our part of the story were to be told, all of America would be outraged. Remember in 1989 we were just like most Americans, healthy, with family and friends and the future looked bright. Severe chronic intractable pain happens, it can happen in an instant, it's not by choice. You or your loved ones could be the next severe intractable chronic pain patient, is this how you would want them to be treated?

Thanks for reading, I have documentation for every thing I have said here and much more. The story doesn't end here, its actually just beginning. Feel free to contact me, I'm available whenever its convenient.

 

Thank You,

Larry Gordon

 

Here is a complaint on December 19, 2018  to the Oregon Medical Board about the doctor who force tapered her against her will:

 

Wendy has been 100% disabled and on SSDI since 1999 due to severe intractable chronic pain from 2 failed cervical fusion surgeries in her neck and Multiple Sclerosis. I have been with her to virtually all her medical visits since the 1990's. She saw a pain specialist (Dr H.) who put her on methadone for pain in 2004. Shortly after, Dr. H. passed her methadone prescription on to her primary care doctor (Dr C.) who continued to prescribe until November 2016.

  Dr. C. [name redacted], who knew her situation intimately, and was opposed to tapering her off methadone (exhibit #1), now told her it was now against clinic policy for him to prescribe any opioids. He referred her to the original methadone prescriber, Dr H., who refused to see her. (exhibit # 2). Dr C. then referred her to Dr Ch., not the doctor of her choice, but he told her, if she didn't see him she would have to go (cold turkey) as he would no longer prescribe any pain medications.

  She started seeing Dr  Ch. in 12-14- 2016. She filled out several pain questionnaires. In our first brief meeting, he re-diagnosed her with chronic low back pain, something she did not have (we don't know where he came up with chronic low back pain). (exhibits #3,4). There was no discussion about how well she had been functioning the past 13 years or what her daily activities included or the benefits verses the risks of methadone. There was no discussion about Dr C.'s medical opinion, or the fact that she was and always had been the ultimate compliant patient, no red flags, no history of drug abuse, alcohol use or any complications with methadone (exhibit #1). The only discussion was that complete taper was inevitable due to CDC guidelines.

  2-2-2017 was our next appointment. Dr Ch. asked if we had seen Dr C. again. We told him yes and Dr C. was no longer willing to discuss Wendy's pain issues, he didn't want to be her doctor and he would not prescribe any pain medication. Dr C. went on to explain how much more intense the government reaction was to the opioid epidemic.  He stated there were many other pain medications available once she was methadone free and he pushed hard for her to get on buprenorphine.

  4-26-2017 our next appointment. By this point Wendy had suffered the intense withdrawal symptoms and now her chronic pain had intensified. Dr C. had abandoned her and although we tried to find a new primary care physician, and we tried several (over 10), none were accepting chronic pain patients. Our visit with Dr Ch. took a bit of a turn that day. He once more gave a new diagnosis, fibromyalgia, again something she had never had. He said he was able to make this diagnosis by the questionnaire we filled out before each appointment. He pushed hard for buprenorphine, said it works great, but many patients on opioids don't like it because they don't get the euphoria they seek from their opioids. Wendy explained she gets no euphoric feeling from methadone, she's not seeking euphoria, just seeking pain relief. Dr Ch. explained all mammals get a euphoric feeling from opioids, just because she doesn't think she's feeling euphoric, but still wants it, only confirms that she is an addict. "When we use buprenorphine, we use it in the context of opioid use disorder, so we make the diagnosis, NOT OF PAIN, but  of opioid use disorder......because of your craving for opioids". We walked out stunned, her 20 year diagnosis of a severe intractable chronic pain by many many doctors and specialists over the years was wiped out by one uninformed anesthesiologist. She was now being treated as a drug addict. Wendy was completely tapered off methadone and given 25mg a day of oxycodone for her pain, less than half of what the CDC allowed. Why would you take a patient from 1105 MED to 25mg when you knew they were suffering?

  After suffering for months, the intense pain had returned, constant, unending, 24-7. She was in serious mental and physical distress. She hadn't slept more than a couple hrs a night for several months now, she'd lost 40% of her body weight, lost most of her muscle tone due to inactivity trying not to move to avoid pain. Her MS, that had been controlled was more active now than it had been in the last 20 years and she was losing her ability to walk. Unable to do any daily activities, no more visiting with our children or grandchildren, she spent her days laying on the floor or sitting in a chair for short periods of time trying not to move. She was deeply depressed, emotional, with zero quality of life, and no hope for the future. At our 9-21-17 appointment Dr Ch.'s boss/mentor (as he described him) was there to observe. We explained how dire her situation had become and that this course of treatment was not working. Her physical appearance had diminished and it was obvious to both doctors that she was in serious distress. They upped her oxycodone to 40mg a day. (exhibit #5). It did nothing.

  By our 3-21-18 appointment, nothing had changed, things had only gotten worse. She hadn't slept for close to a year now. Each and every day was just another long torture session. We broke down and asked if we could try buprenorphine to see if it would help. We were told you cannot try it unless you submit to the diagnosis of opioid use disorder. Wendy did not have OUD, by any standards, including Dr Ch.'s own handout. This was outrageous, nothing for pain unless she accepted the OUD diagnosis. We explained her concerns about this, after reading dozens of horror stories of chronic pain patients who broke down or unwittingly agreed to this mis-diagnosis just to get pain relief. Only to find buprenorphine didn't work for their pain or they had side effects. Now they were labeled as drug addicts and drug seekers and unable to go back to the medications that worked. Dr Ch. told her she was not an expert and all these storied were fabricated. She was never asked or offered any other pain medication. Her choice was submit to OUD and buprenorphine or suffer. When she said no to the OUD diagnosis, he laughed and said "she's not ready yet, it's there if you want it." He was not concerned with her suffering or physical condition.

  On 5-8-18 we went to urgent care, Wendy was having chest pains. We saw Dr C. again, he was concerned about her chest pains and did an EKG. He was shocked at her physical appearance and her emotional state, he hadn't seen her at all in the last year and a half. He asked if Dr Ch.was managing her pain. Last time he saw her she was healthy, functioning and doing well.

     5-21-18 was our last appointment with Dr Ch. (exhibit #6,#7) At this point we had given up any hope of finding help. I had written letters to the CDC, FDA, every politician and every pain community, this was happening everywhere and there was no relief to be found. Wendy's condition had deteriorated so much, the unending pain, day after day after day. This had gone on for so long that we finally realized there was no reason to live anymore and suicide was now our only topic of conversation. We told the children to prepare for it. (Emphasis added.) I was still stunned that Dr Ch. would not prescribe adequate pain medication, especially in her condition unless she agreed to the mis-diagnosis of OUD. So I asked him straight up are you saying she has OUD? He said "that's kinda her call, addiction happens to people on high dose opioids for extended time. In my clinic, buprenorphine is used to treat addiction." And he walked out of the room. We begged his nurse to listen and told her people in our situation were committing suicide and we were there. Her comment was "ya, people were killing themselves before this too." 

  My complaint is simple, how can a doctor, morally or ethically take an unfortunate intractable severe chronic pain patient who had good function, her MS controlled and some quality of life. The ultimate compliant patient with no red flags, no drug or alcohol abuse who only did exactly as her doctors said. Tell them they're a drug addict, take away their pain medication of  decades, watch them be completely destroyed physically and emotionally to the point of zero function, zero quality of life, a lump of skin and bones twitching in the corner. So completely ruined that suicide sounded so refreshing and such a relief that their willing to say good-bye to their family, their children and grand children. How can someone with such authority be so uncaring and unwilling to listen! Use their patients pain to extort an incorrect diagnosis to fit his narrative. This man is an arrogant monster and needs to be reined in before innocent people die!

Some how one of my letters found it's way to a chronic pain patient who called into a midnight radio talk show in Canada. Wendy and I were contacted and  hooked up to a nurse practitioner in Portland Or. We saw this NP just days before suicide, she was appalled at what we had been through and put Wendy back on medication . We are recovering slowly, but there appears to be permanent damage.  

  I have lots of documentation to corroborate everything I have said here. Please look into this, what's going on in Dr Coelho's office is simply inhumane mistreatment, unethical and inexcusable.

 

 

I certify that the above information is true to the best of my knowledge.

 

 

Signature of Complainant _________________________________ Date _______________

Editor's note: The Oregon Medical Board wrote back to Larry on February 27, 2019 and asserted that there was "insufficient evidence to carry the complaint forward."

 

Here is a letter written by Larry's 36-year-old son in February 2019 to thank Wendy’s new physician ( who put her back on methadone) in Portland, OR.

 

I’m writing you today in regards to my Mother Wendy, a patient of yours. I want to personally thank you for stepping up and taking on a patient that everyone else was afraid to deal with given all the new rules and regulations dealing with prescription pain medication.

 

My mother is an amazing person, she is as tough as nails, yet the most compassionate, loving, caring individual you will ever meet. She has gone way out of her way to help others on more occasions than  I can count. She is the rock of the family, the glue that holds us all together, the one that I look up to and inspire to be like. She has never hurt anyone in the 37 years I have known her. Yet it seems in the toughest of times of her life there was nobody with the power to help her that was willing to do so. Doctors turned their backs and treated her like a problem instead of a person. She had Done nothing to deserve this kind of treatment.

 

When Wendy was on her pain medication as prescribed by her doctor after the MS diagnosis she was fully functional. Her health was not as a person without a chronic disease would be but she was happy, active and around for activities and events. Her spirit was uplifting and the people around her that didn't know the extent of the MS was not aware of her pain and suffering, as her meds helped her function with her strong physical and mental capabilities she seemed "normal" to outsiders. It was obvious the medication and her toughness gave her a real shot at a fully functional quality of life.

 

Then came the days of the "crisis" with Opioids and everyone that had treated her in the past simply abandoned her. Doctors with high credentials from pristine universities saw Wendy and came to her MS diagnosis. Their treatment plan going forward had worked for many years. She was living a life of a normal wife, mother and Grandmother given her unimaginable disease that nobody deserves in life. Once the medication was cut off, her primary care doctor left, her pain specialist requiring her to admit abuse, and nobody to turn to she went into hiding. She spoke of Suicide, terrible pain, depression, activity from her MS that was increasing, weight loss and extreme stress. She quit coming around to family events. She stopped seeing her Grandchildren. I would go weeks even months without seeing her. It was extremely frustrating for me, I cant fathom the misery my mother was going through. It upset me to no end. That's why I'm writing you today.

 

Once my mother found you to take her on as a patient of yours things drastically changed for the better. I attribute this to you allowing her to get back onto the proper medication that worked for her for so long before she was so cold heartedly dropped by the others that took an oath to help people. My mother is again happy, smiling, coming to events and seeing her grandchildren again. She never deserved to be treated like a junkie. This "crisis" is effecting a broad range of people. Wendy and all other pain patients are getting lumped in with addicts and criminals. This is wrong, any doctor can see that, it's just amazing to me they don't defend the ones that need the most help. You a unique person that is willing to do the right thing no matter the cost, very similar to my mother. Her progression back from where she was is black and white. She is so much better with her Methadone than without it. Thank you for doing the right thing and helping the ones that need it most. My family is very lucky to have found you. Your greatly appreciated by many in the Gordon family. Myself included. Thank you for giving me my Mom back

Mike Gordon

 

And one more from our 32-year-old daughter to Wendy’s new physician in November 2018:

 

                I wanted to write a letter to voice my appreciation for getting my mother back on the necessary medication to make her life worth living. I almost called you to thank you when I noticed the changes in my mothers’ health in the weeks following when you started seeing her as a patient.

I have cried endlessly, prayed diligently, and watched my mother’s quality of life suffer drastically when she was taken off the methadone she was prescribed for over 20 years. I could notice a slight difference in her appearance and attitude right after her previous Dr. started tapering her off in Jan 17’. After a few months, I felt like I was talking to a Ghost, just an outline figure of where my mom used to be. She could no longer hide the fact that she was in constant pain. She was not sleeping she also lost nearly 1/3 of her body weight. I was literally watching my mother vanish in front of my eyes and there was nothing I could do to help, I was hopeless. She was obviously not going to be able to hang on much longer in the condition she was in.  She couldn’t sleep, couldn’t eat, it was the worst I’ve ever seen her… To watch my mother suffer so much and know she wanted to give up on her own life, is something I would never want to experience again. I couldn’t imagine how she felt, but I am so thankful she’s still was able to get through this horrible time in her life.

 I felt selfish for asking her to go out to dinner or my children’s sporting events. It was evident how much her quality of life had dwindled and was continuing downhill quickly as she was vanishing in front of our eyes, not only physically, but emotionally, mentally, spiritually. I could tell she was ready to give up and let go of life. I knew she fought to hang on simply for family. We’d go visit and she couldn’t sit, couldn’t stand, and would be laying on a pad on the ground not able to move much. It was extremely apparent she couldn’t take the pain of living as she was. She couldn’t hide the fact that she really wasn’t okay anymore from us... And my mom has always been good at hiding her pain, she never complains. Never allowing anyone in to feel sorry for her, or even know she has a disease that’s wreaking havoc on her internally. My mom is my hero. She deserves the world. I write to Thank you Dr. Carolyn. Thank you for giving my mom some quality of life back. It didn’t take long to notice that my mother was starting to become “human” again instead of the walking dead she’d become. She started to maintain weight. She was no longer talking about wanting to die or be put out of her misery. My mom let me know she was able to sleep again for a few hours at a time because she wasn’t in extreme pain. This was the first time she’d slept in quite some time. My children play sports and she’s been able to attend some of their games recently. She is in no way shape or form 100%. But she is able to live and interact with family and our attend events every now and then. She’s able to live a life worth living.

My children and I are forever grateful for you coming into my mother’s life. Having my mom back and able to go to lunch with us and having her present at my children’s games is wonderful. It means everything to my children to have their Grandma able to make memories with them and support them in their dreams and aspirations. We all love her so much and it is so nice having her be able to partake in events with the family again. It is a night and day difference since her since starting back up on methadone. I thank you from the bottom of my heart for finding my mother, fighting for what is right, and helping her when no one else gave a damn. I cannot imagine the daily pain, but I can tell you since you’ve come in as her Dr. and started treating her like a human should be treated, focusing on HER symptoms, that little twinkle in her eyes is back. She is no longer the walking dead going through the motions of life. She is able to live, and in turn enriching her grandchildren’s lives, my life, and everyone else she meets along the way… 

My mom doesn’t deserve to have MS, but in life we get the cards we are dealt, however bad they may suck. She has inspired me, and others, and continues to inspire. You came into her life and saved her just in the knick of time I believe. Prior to you helping her, I prayed for the strength to not be selfish nightly. I prayed for someone, anyone or anything who could make her life worth living again to help. I prayed that if no one was coming to help her that I had enough strength and understanding to not be selfish and tell her that if she’d rather die we understand.  That was a hard concept for me to swallow, when you’ve come to the realization that you know your own mother was suffering for so long and in so much pain and there was nothing that could be done to ease her pain that you could say “We will miss you dearly, but don’t hang on just for us.” My mother wasn’t who I’d known anymore. She was a ghost in her body that was rapidly shrinking, apparent to everyone in her presences she was ready to end her life. I truly believe you saved all of us from dealing with that pain. You brought my mother back to life again and in turn enriched all of our lives. 

 

Thank you from the bottom of my heart.

 

Aimee