Fear Instead Of Trust


Hello Luvs,

Sorry I’ve been quiet for a little while. I recently went to get new hearing aids. I was so excited to get new ones after 10 + years with my old Rextons. I was awaiting new insurance after my husband retired.

I went to see the audiologist & afterwards she asked if I’d be willing to see the nurse practitioner. I agreed, & afterwards they told me that I needed a CT scan because my hearing had declined so much more on the right side. They set up an appointment with their ENT Dr., the day after we returned from visiting our daughter, son in law & grand babies. I was a bit curious as to WHY they were telling me to come the day after I got home? I would be in pain and exhausted. But it never entered my mind what I would find out next!

So, when we were in Texas, I got an email message telling me that my CT results were available in the hospital’s portal. I know there’s a disclaimer stating that “you can find out things about the gender of your baby, HIV or other illnesses, even cancer”. In other words, do not look if you don’t want to know until you’re sitting with a Doctor.

But I’ve been through a car accident, deafness, multiple chronic pain illnesses & approximately 9 surgeries just since that accident. I can handle it, right? It can’t be bad if they already put it in the portal…can it?

It’s not bad…. it’s worse than that. I’ve never been so terrified in my entire life! I don’t even know how to verbalize my fear this time. There’s no way around it. I can’t go over or under it. I am being forced to go through it. I’ve been diagnosed with a Cholesteatoma. If you see the #cholestatoma or #cholesteatomasucks on Instagram, it looks like a horror movie. I’m not kidding! It’s really terrifying and people get these horrible skull base surgeries. Facial nerves, worsening deafness and brains are involved.

I found out that I have to have my hair shaved on the right side above my ear. My mastoid bone is affected; as are the 3 bones needed for any hearing. My skull will be drilled and after a 3-4+ hour surgery and more pain on top of my full body RSD/CRPS & other high pain illnesses; it has a 50% chance of coming back!

Anyways, I’ll write another post after I process what will happen tomorrow morning 6-10-19. I’m seeing a skull base/neuro/ear surgeon at 8:30 am tomorrow/Monday morning. I’ll get my questions answered, I hope? Will he be kind and compassionate? Will he help my post-op pain?

I saw my pain Dr. this past Thursday. I also saw my GP this week. The GP was so kind and first time ever, she gave me a hug. My pain Dr has turned from Dr Jekyll to Mr. Hyde over the past year. I’ve never failed a drug test or run out of meds early! I’ve never done anything wrong, yet he’s treated me less than human now for months! Before he’d even accept me as a new patient; he ordered me to stop taking my “quick acting” pain medication. It was something I’d been taking for 13 years (*my former Dr. of 12 years had prescribed it, but then one day he just vanished. That’s when I was forced to find a new Dr.).

In July 2018; he told me he was stopping my long acting pain medication… “that day”! No tapering just stopping it! I did not cry or get upset but I asked “why”? He told me “it’s illegal now and if I help you, I won’t be able to help all of those other people “!

I got him to listen a tiny bit because I reminded him of my stroke and heart attack in the past. He decided to give me one more month. He then said in a nasty tone that he was doing that “to get me psychologically ready”! Really?? It has zero to do with my psychological status and everything to do with high impact chronic pain. Of course he “covered himself” by offering me a different, long acting medication that I cannot take because of issues with Gastroparesis & not being able to metabolize a long acting oral medication. My GI Dr wrote him a letter & told him just that! The pain doctor just said, “This is bullshit! His medical license isn’t any better than mine! If he wants you to have that pain medication, let him prescribe it”! Well, of course He’s a GI doctor and he can’t!

I had my other physicians telling me that “it was unethical for my pain Dr to taper me so quickly!” They said it should have been 10% lowered at a time! But nobody was there to save me and I had to accept it and try my best to move on & keep going. I did it myself when I was told to get off of the quick acting medication. My body physically did not feel well for awhile but I never once craved it or wanted it in my mind- not ever! Then I got off of that long acting medication and once again, I did it myself! You’d think my pain Dr would respect me just a little. But instead, he’s treated me in a demeaning, disrespectful manner ever since last year in March of 2018.

I told my pain doctor that I’m going to have to have this really scary skull surgery soon. That I’m seeing a neuro/skull base/ear surgeon. He was so cold, uncaring & horrible that I truly cannot believe he’s a physician! He told me that I shouldn’t behave like I’m “too afraid” or the surgeon may refuse to take my case! That’s insane if you ask me! What high impact chronic pain patient, headed for hair shaving, painful head surgery wouldn’t be afraid? I’m literally frozen with fear inside! But I’m strong, resilient and I’ve been a survivor through childhood abuse, horrible teen years with my kids, abusive marriages and a catastrophic car accident. Since the car accident, there have been 9 surgeries, 2 pacemakers and several metal screws and implants embedded into my body.

I can do this! Right? Can I do this? Do I have a choice? What did I do that’s so terrible in my life? I have tried my best to be a good person & to help others. I’ve been a Chemo-angel since 2005. I’ve written countless letters, made numerous videos and I’ve met with & spoken to legislators regarding this fake opioid crisis! This horrible and torturous pain crisis that’s killing innocent people everywhere.

Now comes the big question, what happens with my post-op pain care? My pain Dr told me if he was my anesthesiologist, he wouldn’t give after care post-op meds because of “risk for complications”! Gosh… I’ll bet if it was his skull being drilled, he’d be asking for some pain relief medication? He acted like I was getting a hangnail removed! Anyone else who I’ve told, says “oh my goodness, that sounds scary!”

So, my friends, here we are on the eve prior to the appointment when I’ll get all of my questions answered, I hope! What do I ask? How do I ask it? Will I be judged? Will I be too complicated and will he “run”? Will he really not help me just because I’m afraid? I’m not acting out hysterically. I’m not crying in front of the Drs. But I’m deeply scared and I’m having horror flick, bloody, stabbing nightmares! I don’t even know the surgery date as if this post. But I’m pretty sure I’ll know by the time most of you read this.

I promise to let you know when it will happen. If anything happens to me, please don’t forget me, OK? I love so many of you. I’ve seen so many of my friends in pain pass away over the past few years…it’s sad and I miss them a lot (Connie, Cyndi “Maw”, Theresa, Gwen Barbara, and Dawn Anderson most recently).

I’m not being morbid, I promise I’m just afraid. I feel less strong as I get older now. I’m 57 years old and was just looking forward to enjoying retirement with my soul-mate; my husband. He retired last June and we’ve had one thing after another come up. I’d really like to take a breath and enjoy some period of time in my life, for a change. We have 4 darling grandchildren. I just want to hug them, love them and enjoy them as much as possible. Will I ever get to do that now?

Oh…. & last but not least, I told my father about this upcoming surgery. I told him that “I wanted my mom more than ever right now” (she died in 2002). He told me that through her cancer etc., there were many times she “needed things“(he was telling me that I wasn’t there for her)! Well, I’ll just share with you all that I tried prior to my catastrophic car accident, to be there for her. I showed up at the hospital even after being told “she didn’t want me there”. I got there and I was told to leave. I was the only person allowed by the nurses, to sit with her in PRE-Op for 2 hours. We had 2 hours of alone time and it was once in my life that we got along & she wanted me around, it seemed? It was very nice, actually. But then the entire duration of the surgery, I was bullied, mocked, disrespected and literally treated like scum under a sink, by my Aunt, my 2 brothers and my dad.

Please pray for me so that I can be strong like I used to be and like I usually am. I need strength and . I’m terribly frightened tonight as my fate lies in the hands of a stranger that I will meet in 7 hours or so. I have heard & seen many horror stories of pain patients like me, being denied proper post-Op pain management. That fear is probably my biggest fear of all, or in the top 3!

Oh yes, I almost forgot to tell you what my Pain Doc said before I left his office on Thursday. He told me he was “OK with me getting the 3 days of post operative pain control from the surgeon”. He told me to “not accept the post-op meds if they just give me Tylenol with codeine, because that would be like a baby aspirin for me”!

In 2013, I had a full pectoral rebuild and new pacemaker. My cardiologist was wonderful to me! Things are so different now! Im feeling like the powers that be, the government just want persons like me to be gone and out of the way. But I’m still a human being. I want to live. I want to travel even a little. I want to be a grandmother.

I promise to write a quick post as soon as I process and know what’s happening & when the surgery will be.

Thank you in advance, for any and all prayers, positive thoughts & energy sent my way.

As I await my upcoming appointment I would love to be able to sleep. But when I’m really afraid, my GI tract takes over. It’s as though I’m on “auto pilot”. I get overwhelming stomach nausea and flu-like symptoms. THATS how fearful I am feeling. I’ve tried to control it but it’s a combination of PTSD, Dysautonomia & a highly over active “fight or flight response’.

In conclusion, I have a final request: Now is NOT the time to tell me a horror stories regarding any of your past head, skull or brain surgeries. When I recover, I promise…..then I will be glad to listen, help and share etc. Also, it’s such a shame in these days of crazy & draconian policies, that we all have fear instead of trust in the entire “system”.

Sending you love and light!

Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same

Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Are Imposters Preying On Unsuspecting Patients In Our Pain Community Again?


Hello Luvs

Once again I’m so sorry to be giving the news regarding the possibility of imposters (or at the very least, these are persons who don’t have the best interest of our pain community in their hearts) infiltrating our pain community. Last I wrote about this subject, was a month ago, inside of several groups, to warn them! It was regarding the notorious “Kate Ashworth” aka “fake RSD/CRPS guru”(see article link below). She was back again; hurting unknowing chronic pain patients! Those affected, just happened to be persons who also live with the unbearable pain of RSD/CRPS. (To find out more about RSD/CRPS, please visit: For Real Facts & Information About RSD/CRPS, follow this link to RSDSA Home Page (Reflex Sympathetic Dystrophy Syndrome Association)

*(To Read the article about the imposter,“Kate Ashworth”,who recently came back a second time & infiltrated the RSD/CRPS community; visit this link: This is the Link to the article about Kate Ashworth, an Imposter to the Chronic Pain Community) “Strangers Among Us”

On Tuesday night 3-6-29; I saw a message from a long time RSD/CRPS friend on Facebook. I saw the message very late in middle of the night and it was written by Mary Mattio, in a “closed & secret” Facebook support Group for RSD/CRPS. Posting with permission, this is what I read at approximately 11:30 pm:

I’ll show you everything that was written underneath. But first I want to say “thank you” to Mary Mattio for posting about this to the Facebook group, . When digging deeper, I’d like to say “thank you” also to Tracey Tipton-Morales & Marisa Gravett for their “detective work”, involvement and postings. But we need to all give a special thanks to Sarah Lesley, for being the first to figure out all of this mess which I’m going to try to explain. So thank you to everyone who’s been involved in getting the word out, sharing, reporting and blocking these alleged fakes.(I have to say “alleged” but I believe it is true, with my whole heart!)

This was the full post shared from Sarah Lesley & Marisa Gravett:

⚠️ ATTENTION CHRONIC PAIN COMMUNITY⚠️

* Shared from Sarah Lesley & Marisa Gravett *

Okay CRPS Community: If you are in the group “RSD/CRPS and Neuropathic Pain Syndrome” beware… This was brought to my attention this morning. One of the admins actually works for a treatment center that focuses on getting pain patients to stop talking about their pain, basically making it seem like it’s all in our heads. I just saw a YouTube video shared in a post on that page this morning of him doing a presentation about his research and recovery centers and how it focuses on getting pain patients to stop focusing on their pain and to be able to return to be active members of society again. Basically making it sound like we don’t really need medical care, treatment etc…

I am infuriated at some of the things that I have seen and found out. We believe that many of the admins are either fake or using fake names and or involved in depth with Dr. Rand and his treatment centers as one of his treatment centers is referred to as the Bay Area and the last name of many of the admins is Bay…

Think of this as a conspiracy theory if you wish but I have just seen with my own eyes a YouTube video by Dr. Rand speaking about these treatment centers and it is very clear that this group and possibly other groups that we may all be involved in with similar admins, maybe using the information that we give against us as research, or to turn it in to help with their research or so-called research.

It is clear that this group is not created to help others. Many of the members I am sure do their best to help many people in this group to share information to ask questions and I do not blame or think any of the members are involved except for the ones that are listed as admins.

If you are in this group you are advised to check it out for yourself and if you feel the same way to delete the posts that you have in that page as well as get out of it. Also I would advise all of us to take a better look at who the admins are in many of our groups if we do not know or have never checked it out. We need to do all we can to look out for ourselves and our fellow CRPS Warriors and if there is any chance that this group is not on the up-and-up or could be using our information for any purpose other than to help each other live a life with this horrendous evil monster of a disease, I want no part of it and I do not want any of you to as well.

I was originally going to tag everybody in the post within the group that I’m friends with but there are so many of you I ran out of room on a piece of paper writing your names. I’ll be tagging as many as it will allow. Please if you are a CRPS Warrior check out this group check out the information for yourself and be careful out there.

I urge you all to please report all the fake profiles & all the groups that the fake profiles created & are Admins of, it’s the only way we can get them shut down. This post is now public, please feel free to share. Marisa Gravett has additional information on this as well.

Look up Jerrod Rand on YouTube if you want to see for yourself. Be careful out their Warriors. We are finding way too many wolves in sheeps clothing within our community.

** BELOW ARE SCREENSHOTS OF THE ADMINS & A FEW OF THE GROUPS & PAGES THAT ARE LINKED TO THEM **

**BEFORE I REPORTED & BLOCKED THIS “JERROLD RAND” facebook account (whether someone is using his name, or it is truly this person; we don’t know yet?)- I FOUND THIS POST VERY INTERESTING & TELLING OF PROBLEMS ON/WITH THAT PAGE:

I wanted to add that we all need to be vigilant, but we cannot allow ourselves to overreact or get too upset over this. Though it is very upsetting, our main goal is to stay calm and get the “word out” to the RSD/CRPS & Pain Communities. If everyone who reads this can go and report each of these groups and the 5 accounts that appear to be for the sole purpose of “pushing” these 30 or so “support groups” on unknowing people in pain! If we all can do that, Facebook will be able to shut them down!

Please understand that I’m in no way condemning those who have joined these groups. It’s not their fault. It’s the admins (whoever they truly are??) of those groups who are to blame. They are violating our community and others. Once again, people had recently been asked to send in photos of their Rsd/CRPS affected limbs. People, please don’t send your photos to anyone who asks. If you’re friends with someone who you know & feel comfortable with; and you want to share a photo; go for it! But please, just a bit of advice from my heart: “please don’t send your personal medical photos to anyone who requests them from you”. Also, PLEASE don’t take any medical advice from anyone online. They could be impersonating anyone! Only take therapeutic, medical advice from your own personal medical professionals. The ones who know you and your personal mecical history.

Any questions, please don’t hesitate to ask: Sarah Lesley, Mary Mattio, Marisa Gravett, Tracey Tipton-Morales or you can ask me & I’ll do my best to get the right answers for you.

Please share this public blog post everywhere that you can. We need to look out form& take care of each other! Thank you for your time!

Lastly, here’s a link to a video by Jerrold Rand who seems to be the ringleader:

1: “Dr” J. Rand on Opiate use” at his Youtube channel called “Bay Recovery”

2: “Dr” J. Rand talks about Methadone on his Youtube channel

3: THIS ONE MAY UPSET YOU- if you’re fighting for your life-saving pain medication right now (just forewarning you): “Dr.” J. Rand’s patient talking about chronic pain etc. (On Youtube)

I hope that you will all just take this information and do what’s in your heart. I cannot honestly write here, that I know anything “for sure” about this quack! I’m writing an opinion piece (because we are all allowed to have our own personal feelings and opinions). But my opinion is that this guy and his 30+ Facebook groups, fake admins (possibly?) and several fake accounts, are frauds! I’m just sayin’—–check the one photo screenshot above especially!! The one that shows that his license was revoked in 2012!! Then look at the News story underneath that one! About him self-prescribing sleeping pills etc! Also, it appears from that News piece, that he somehow may have been responsible for a women’s death??

Sorry for the bad news! But I love you all with my whole heart & soul. I feel an inner tug at my heart to protect you in any way possible.

AMA Guidelines


Hello Luvs,

I wanted to make sure that you all have heard about the new AMA Resolutions, regarding the CDC Guidelines for opioid prescribing? The guidelines that have been taken as the “word and the law” by many pain management physicians and others.

Those CDC Guidelines are and were supposed to be voluntary and just be what they’re called, “Guidelines”. Doctors, pharmacists and government officials have been turning them into “law”. Many people in the chronic pain community have been negatively affected, including me!

I wanted to post a copy of just the AMA resolutions that pertain to us; the chronic pain community. Below I will have that available for you to print. You should take it with you to each Dr appointment & especially your pain physician. But first let me give you the link to the full AMA Resolutions here: The AMA Resolutions for Chronic Pain Patients

*(The above link is working again)

***Also, I’ve posted just the AMA Resolutions pertaining to the chronic pain patients: Please be sure to print out and take to each of your physicians & especially your pain Physician:

Sending Hope, Light & Peace!

Suzanne

Letter To Brandeis University


 The letter below was written by Richard “Red” Lawhern & signed by many Physicians, Pharmacists, Nurses and pain patients/Advocates (Including Me). It was sent approximately October 2017. Here’s a full article from the Pain News Network about it: https://www.painnewsnetwork.org/stories/2017/10/3/patient-advocates-call-on-brandeis-to-fire-kolodny and below is the letter in full, and which I signed:(my name is in bold print just here to share with you)….sadly, it didn’t do anything, but seemed to give Kolodny more resolve. We need to keep fighting this! We cannot give up. I’ve lost my LA/ER pain meds now and I’m not stopping the fight until my last breath. Here’s the letter in full:

To:  Ronald D. Liebowitz, President, Brandeis University [president@brandeis.edu]

       Nancy Winship, Chief Philanthropic Adviser to the President, Brandeis University 

winship@brandeis.edu  

       Constance Horgan, Founding Director, Brandeis University Institute for Behavioral Health,  [horgan@brandeis.edu]

        David Weil, Dean, The Heller School of Social Policy and Manageme  [davweil@brandeis.edu]

       Mark Allen Surchin, President, Brandeis Alumni Association msurchin@goodmans.ca

    To the Administration of Brandeis University,

I write as corresponding secretary of the Opioid Policy Correspondents List.  We are a group of medical professionals, healthcare writers, social media group moderators, knowledgeable chronic pain patients and family members.  This group of volunteers receives no funding from any source.

We call upon the Opioid Research Collaborative and Brandeis University to immediately reevaluate your relationship with Dr. Andrew Kolodny, MD and to consider termination of his relationship with Brandeis.  The basis of our request is as follows:

   1.  Many of us are patients dealing with medical disorders thatcause levels of intractable pain among the most severe known to medical practice.  Others are physicians and nurses who have treated such disorders, most of which are incurable at the present state of medical knowledge.  Several of us have published work on this area of public policy and are highly conversant with the practice standards issues involved.

   2.  For millions of Americans, prescription opioid analgesic medications are a central element of patient pain management plans.  Without compassionate care employing these analgesics, many tens (perhaps hundreds) of thousands of patients will lapse into agony and disability.  Some will very likely die. We have each been witness already to multiple unnecessary deaths reported in social media and in articles by medical professionals. 

   3.  Chronic pain patients are increasingly being denied access to these essential life supports — in large measure due to the actions and advocacy of Dr. Andrew Kolodny and like-minded others. 

   4.  Because of genetic polymorphism, many pain patients are “hyper metabolizers” or “poor metabolizers” of one or more opioid medications.  Opioids are broken down in their livers at much faster or slower rates than in average patients.  To manage their pain, many require much higher doses than the 90 Morphine Milligram Equivalent Daily Dose (MMEDD) threshold of risk that is asserted in the March 2016 CDC opioid prescription guidelines.  No provision is made in the guidelines for hundreds of thousands of such people.  Based on his published work, Dr. Kolodny seems to ignore that such people even exist, despite the well established body of science thatdetails their conditions.

   5.  Dr. Kolodny has been prominent in a National campaign to deny chronic pain patients even minimal management of their pain.  His actions are directed toward forcing draconian restrictions or outright withdrawal of this class of medications from medical practice. He calls for forced tapering of patients formerly prescribed opioids. Policy positions for which he advocates are leading to the deaths of hundreds of chronic pain patients by suicide or pain-related heart failure and medical collapse — also incontestable facts that Kolodny has publicly denied.

   6.  Dr. Kolodny was a central figure in panels that wrote the 2016 CDC opioid guidelines.  The resulting document is widely understood by medical professionals to be profoundly flawed and actively dangerous.  The guidelines incorporate gross errors, anti-opioid bias, cherry-picking of published findings to support a political agenda, and omission of pertinent research thatcontradicts guideline recommendations.  As a consequence of these distortions and of a related US DEA witch hunt against pain doctors, large numbers of physicians are leaving pain management and hundreds of thousands of patients are being deserted and abused across America.

   7.  Dr. Kolodny may also have failed to acknowledge financial and professional conflicts of interest incompatible with the work he was hired to perform at Brandeis. He helped to found and runPhysicians for Responsible Opioid Prescribing (PROP), an anti-opioid lobbying group.  This organization has several times petitioned the FDA to restrict opioids (many aspects of PROP petitions have been outright rejected as unfounded).   He has also been Chief Medical Officer for Phoenix House, a chain of addiction treatment centers which has been challenged over deaths among those they have treated and released without follow-up or community support.   He has represented the interests of insurance industry groups that seek to deny coverage to chronic pain patients because of associated expenses. None of these affiliations is compatible with balanced or science-based positions on opioid policy.

   8. Some who have described Dr. Kolodny in public press have characterized him as “controversial”.  This designation is entirely too kind.  Among people in pain, he is one of the most polarizing and hated figures in medicine.  His public statements are widely rejected by those whom they directly affect.

   9.  Although Dr. Kolodny has a work history in public health and addiction psychiatry, he is neither qualified nor Board Certified in pain management — a closely related field that has been profoundly and negatively impacted by his assertions concerning public policy.  From his published articles and interviews, it is clear to many readers that he knows or cares little about chronic pain patients and their treatment.  A lot of what he thinks he knows about addiction is unsupported or contradicted by medical evidence and by the lived experience of many thousands of patients.    

  10.  In our view and those of many people whom he has harmed, Dr. Kolodny makes no positive contribution to the work or reputation of Brandeis or its research centers.  To the contrary, we believe it is ethically and morally imperative that he be dismissed immediately from the University, before his presence further damages both your reputation and your financial endowments.  We urge you to engage staff in a due-diligence review of his published positions and advocacy, to verify the concerns we have offered above.  

You surely cannot align yourselves with someone who has made the following kinds of public statements:

“We lack evidence that opioids help chronic pain. Evidence is mounting that tapering improves pain and function.”   [From a Tweet by Dr. Kolodny addressing his statements in a CNN article at http://www.cnn.com/2017/07/17/health/chronic-pain-opioid-tapering-study/index.html ]

“When we talk about opioid pain medications, drugs like hydrocodone and oxycodone, we’re talking about drugs that are made from opium the same way that heroin is made from opium.  The effect that hydrocodone and oxycodone produce in the brain are indistinguishable from the effects that are produced by heroin.  [When] We talk about opioid pain medicines we are essentially talking about heroin pills…”  Summer 2017 issue of Heller Magazine

“Prescribing opioids for chronic pain is pennywise and pound foolish….” …”overprescribing of opioids is associated with sharp increases in the prevalence of opioid addiction, a chronic disease that is expensive to treat and strains the economy in many other ways. Some of these costs were nicely outlined in a recent New York Times article called “The Soaring Cost of the Opioid Economy.” 

“We’re just talking about the economic costs but we also have to consider human costs. By prescribing opioids to chronic pain patients, a treatment that’s unlikely to work and may even worsen pain, the medical community is undertreating pain and failing in its responsibility to ease suffering. And if the pain patient becomes opioid addicted, they’ll be left with a devastating chronic disease that may kill them. Of course, there’s also the collateral suffering experienced by friends and family members, especially when an opioid addicted individual dies from an overdose.” https://www.centerforhealthjournalism.org/2013/10/24/qa-andrew-kolodny-busting-pain-medicine-myths-0

 

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses.  Where exactly is this done in a risky way?” wrote Andrew Kolodny, MD, Executive Director of Physicians for Responsible Opioid Prescribing (PROP).  “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion. Where is this happening?”   

https://www.painnewsnetwork.org/stories/2017/7/20/prop-founder-calls-for-forced-opioid-tapering

 

 

 

Among many published articles that contradict positions advocated by Dr. Kolodny are the following:

Neat, Plausible, and Generally Wrong: A Response to the CDC Recommendations for Chronic Opioid Use, by Stephen A. Martin, MD, EdM;  Ruth A. Potee, MD, DABAM; and  Andrew Lazris, MD.  https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

Opioid Abuse in Chronic Pain — Misconceptions and Mitigation Strategies, Nora D. Volkow, MD, and A. Thomas McLellan, Ph.D.  N Engl J Med 2016; 374:1253-1263, March 31, 2016.

The MEDD myth: the impact of pseudoscience on pain research and prescribing-guideline development  Jeffrey Fudin, Jacqueline Pratt Cleary, and Michael E Schatman,  J Pain Res. 2016; 9: 153–156. Reprint at Medscape:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809343/

An Opioid Quality Metric Based on Dose Alone? 80 Professionals Respond to NCQA  Stefan Kertesz, MD, MSc. Medium, March 22, 2017. https://medium.com/@StefanKertesz/an-opioid-quality-metric-based-on-dose-alone-80-professionals-respond-to-ncqa-6f9fbaa2338

Pain Wars, Suzanne Stewart, Opinion, National Pain Report, September 20, 2017,  http://nationalpainreport.com/the-pain-wars-8834381.html

Let’s Stop the Hysterical Rhetoric about the Opioid Crisis, Jeffrey A Singer, MD, Cato Institute, August 31, 2017. https://www.cato.org/publications/commentary/lets-stop-hysterical-rhetoric-about-opioid-crisis

Even the most basic due diligence will find many more substantive contradictions to Dr. Kolodny’s public statements. 

This issue is not going to go away.  Brandeis needs to act promptly and decisively to preserve your academic reputation,lest you provide a forum for biased science or fraud.  We look forward to your confirmation that action is underway to separate Dr. Kolodny from your institution.  

Note:  you may also receive amplifying letters from others among our membership.  

All of the following have authorized their do-signatures here:

 

Richard A. Lawhern, Ph.D., Healthcare author and 20-year patient advocate
Corresponding Secretary, Opioid Policy Correspondents List

 

Dr. Forest Tennant, Editor Emeritus “Practical Pain Management”

 

Dr. Aimee Chagnon, MD

 

Dr. Steven R. Henson, MD

 

Dr. Mark Ibsen, MD

 

Steven Ariens, P.D., R.Ph. Owner/Operator “Pharmacist Steve Blog”

 

Thomas N. Dikel, Ph.D., Developmental Psychopathologist; Pediatric Neuropsychologist; Adult and Child Clinical Forensic Psychologist.

 

Jon Aumann, certified in Community Based Participatory Research and as Biomedical Research Investigator

 

Kristie Walters, RN, medically retired as a chronic pain patient

 

Jennifer Barnhouse, LPN, medically retired as a chronic pain patient

 

Julianna Hodgman, RN, Chronic Pain Patient

Michelle Wagner Talley MSRC, LPC, BCPC

 

Patricia Davidson, medically retired EMT, 12 year chronic pain patient

 

Duane Pool, Former Registered Nurse, Technical Writer, Social Media Consultant

 

Kristen Ogden, Co-founder Families for Intractable Pain Relief

 

Louis Ogden, chronic pain patient and advocate

 

Sherry Sherman, CRNP, MSN, BSN, CPC, CCS, CCA, CPPM, US Pain Ambassador,            NAPW 2014 Woman of the Year 

Tammi Hale, surviving spouse of a pain patient suicide

 

Angelika Byczkowski, chronic pain patient, advocate, writer, and blogger

 

Donna Corley, Co-director ASAP – Arachnoiditis Society for Awareness and Prevention  

 

Denise R. Molohon, LTCP, CLTC, chronic pain patient, patient advocate: ASAP, Arachnoiditis Society for Awareness & Prevention

 

Susan J Elliott, chronic pain patient

 

Duff Lambros, chronic pain patient stable on opioids over 20-years of treatment 

 

Suzanne Stewart, chronic pain patient, patient health advocate, CRPS Mentor, blogger & freelance writer (>30 articles in National Pain Report).

Mark J. Zobrowski, chronic pain patient and advocate

 

Spencer Dunstan: chronic pain patient and advocate

 

Sandie Hamilton, Community Care Coordinator, Hope Outreach Ministries

 

Timothy E. Mason, BA Chemistry, Research Chemist

 

Kevin Mooney, chronic pain patient

 

Michelle Ziemba, Writer and Editor, Chronic Pain Patient: Trigeminal Neuralgia (13.5 years),

 

Robert W. Schubring, BA, U.S. Co-Founder, GivePainAVoice

 

Gary Snook, chronic pain patient

 

Shirley Wallace, chronic pain patient

 

Sally Balsamo, chronic pain patient

 

Nancy Calahan, chronic fibromyalgia patient, prescribed Tramadol

 

Caryn Abrams, chronic pain patient

 

Sandy Hamilton, chronic pain patient

Lisa Hess, chronic pain patient

 

Steven Rock, chronic pain patient

 

Tootie Welker, MHS Rehabilitation Counseling

 

Randie Parker, chronic pain patient (diagnosed hyper-metabolizer)

Robert D. Rose, Moderator “Veterans and Americans for Equality in Healthcare” 

Lana Kirby, chronic pain advocate and activist 

Greg Downey, medically retired machinist and chronic pain patient

Shirley Wallace, chronic pain patient

Anne Fuqua, BSN, pain patient / patient advocate

Roberta Glick, chronic pain patient, social worker, advocate

Heidi Schlossberg, chronic pain patient

Christine Falk, chronic pain patient (fibromyalgia, sarcoidosis, rheumatoid arthritis, failed back surgery)

Audrey Liebl, owner of “Fibrom-L”, former EMT/firefighter, chronic pain patient and advocate since 1998

Christine Smith, B.A. Social Welfare, M.A. Rehabilitation Counseling, CVE, retired. disabled. chronic pain patient 

Kathy Kempken, chronic pain patient 14 years (trigeminal neuropathic craniofacial pain syndrome).  Fifteen years professional experience in safety, health and environmental affairs for The Boeing Company

 

Kimberly Miller, Director of Advocacy, KentuckianaFibromyalgia Support Group 

 

Stacey Milligan, chronic intractable pain patient 

Mary A Rooney, LCSW, chronic pain patient.

Theresa Boehm, chronic pain advocate

Rose Bigham, disabled chronic pain patient 

Elana Trefzer, chronic pain patient

Kena Gottier, RN, CMT-US Group Administrator, Chronic Pain Patient

Calvin Kramer, chronic pain patient

Richard L Martin,BSPharm, chronic pain advocate

David Becker, chronic pain advocate

Cathy Kean, chronic pain patient, writer, advocate

 

 

Some “Gifts” From The CDC


Hello Luvs,

In writing to Sandra Cashman, MS, Executive Secretary to Office of Chief of Staff at the CDC, I inquired about the CDC guidelines. I wrote about the way that pain patients are being harmed. Telling them how many people including me, are being force tapered. I asked if the “Fentanyl patch” was truly illegal now; for anyone without non malignant cancer pain (as my pain Dr recently told me. He also told me that “I’m educated and should be able to find this info to corroborate what he’s telling me”)!

Below is the response that I received back from her, along with all of the “educational” materials that they sent to me. You may or may not be able to use any or some of this info that I’ve posted. But if it can help you in any way, feel free to copy & paste anything that may be helpful to you. ***PLEASE NOTE THAT THESE ARE NOT THE LAW. THESE ARE JUST THE GUIDELINES AND BROCHURES SENT FROM THE CDC (which may be or most likely is bias)…

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Another File along with the full CDC Guidelines are here for you:

1). https://www.dropbox.com/s/xqqcpgtd659ti23/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20CDC%20%20%20Guideline%20for%20Prescribing%20Opioids%20for%20Pain%20Management%202016.pdf?dl=0

2). https://www.dropbox.com/s/799ks1z3eam8ikr/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20%20%20Fentanyl.pdf?dl=0