Battle lines being drawn in Montana ?

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March 20, 2015

Honorable Senator Jon Tester, DC Office
Honorable Senator Steve Daines, DC Office
Honorable Representative Ryan Zinke, DC Office
Honorable Governor Steve Bullock, Helena Capitol

Montana Board of Medical Examiners
301 South Park
Helena, MT 59602

Dear Honorable Senators Jon Tester, Steve Daines and Rep. Ryan Zinke, Honorable Governor Bullock; Respected Montana Board Members,
We are writing this letter on behalf of Dr. Mark Ibsen of Helena and patients suffering various acute and chronic pain conditions throughout Montana. We believe regulators are targeting the wrong physician (Ibsen). We want to bring you the harmed patient perspective as the model for treating chronic and intractable pain is FAILING THE CONSUMER and we desperately need your help.
We fear that you may not be aware of what is happening on the front lines. Unfortunately, the Montana State Medical Board is indirectly forcing consumers into the hands of interventional pain management, which we believe is a significant factor behind patient harm and need for opioid consumption. We will try to explain why.
First, back pain is a leading cause of disability and epidural steroid injections (ESIs) are pushed on back pain patients ESPECIALLY IN MONTANA. There is NO steroid approved by the FDA for epidural use and the most commonly used drug, Pfizer’s Depo-medrol, is now banned for epidural use in Australia and New Zealand: http://www.medsafe.govt.nz/profs/datasheet/d/Depomedrolinj.pdf
Kenalog, another commonly used drug, has a “Not For” (epidural use) on the datasheet.
There are 100 million Americans who suffer chronic pain, which meets the definition of a pandemic. Approximately 9 million injections are given annually in the U.S. (FDA Hearing, Nov. 24, 2014). At best, epidural steroid injections provide temporary relief. At worst, they cause a lifetime of pain and suffering and need for opioid therapy. Arachnoiditis is clearly listed on drug datasheets as a potential complication. Imagine what this costs insurance companies and federal /state disability retirement funds for temporary benefit (on the front end) plus permanent disabilities (on the back end).
We testified on the dangers of corticosteroids used to treat back pain at FDA headquarters in Silver Spring MD on Nov. 24, 2014. The Missoulian and Ravalli Republic reported our stories:
http://missoulian.com/lifestyles/hometowns/ravalli-county-residents-take-epidural-warning-to-fda/article_b45c9d85-c265-5f16-a6b2-31adeb21f053.html
The true risk of exposure is not thoroughly explained to patients. Terri presented a brief overview of risk, but it was difficult to present a comprehensive risk assessment at the FDA hearing as speakers were limited to 5 minutes: http://www.arachnoiditiscanada.com/fda-hearing-november-24.html
Rates of dural puncture vary depending on technique, experience, prior surgery, etc.
Gary testified about the abuse that he sustained as physicians in Missoula did not diagnose his intractable pain condition, arachnoiditis, caused by misplaced steroids in his spine. After he was harmed, his physician wanted to send him for MORE epidural steroid injections! Prior to medical injury, he was in excellent health and rarely took an aspirin for pain. Now he suffers intractable pain and cannot achieve adequate pain control in Montana because of the current attitudes towards prescribing.
Recent actions of federal agencies (DEA and FDA) are resulting in a shortage of opioids for legitimate pain patients; patients are denied access to pain control then coerced to undergo dangerous spinal procedures. Spinal surgeons in Missoula are pushing injections as a pre-requisite for spinal surgery. Epstein MD observed alarming rates of punctate CSF fistulas during lumbar surgery for stenosis/instability (18.2%) in her recent commentary on unnecessary ESIs (Surg Neurol Int. 2014).
Many other complications were discussed at the FDA hearing, including interarterial injection, spinal cord infarction, paraplegia, quadriplegia, cortical blindness, and stroke. These serious complications are not being tracked: http://www.propublica.org/article/were-still-not-tracking-patient-harm
Second, patients are not informed about the true risk of many complications, and bodies are piling up in social media forums. One Arachnoiditis support group is now approaching 1000 members. Patients are typically given the run-around and labeled as drug addicts after they are harmed by physicians. Most arachnoiditis sufferers have to leave the State of Montana in order to achieve an accurate diagnosis. We are aware of other undiagnosed cases in Montana. Thanks to social media forums, patients are now training themselves to read their own MRIs (swollen or clumped nerve roots and scar tissue in the spinal cord on MRI axial images).
To add insult to injury, patients are misdiagnosed with Failed Back Surgery “Syndrome”, Post-Laminectomy “Syndrome”, and Fibromyalgia (to name a few) when in fact they suffer arachnoiditis.
We would be willing to assist with an educational awareness campaign as there is a serious problem with misdiagnosing in Montana. The most insidious problem associated with adhesive arachnoiditis is obstruction and alteration of cerebrospinal fluid flow because of SCAR TISSUE in the intrathecal space and the resulting “centralization” of pain, which most interventional pain doctors do not understand. It is critical that physicians learn how to differentiate central pain from peripheral extremity pain.
Dr. Forest Tennant provides guidance as uncontrolled pain can lead to serious health problems including cardiac arrest and stroke: http://www.thblack.com/links/RSD/Tennant-PainSigns-6p.pdf
Third, suicide is a problem for untreated chronic pain patients in Montana. Arachnoiditis survivors suffer suicide-level pain, and many take their lives to escape it. Our fellow arachnoiditis sufferer committed suicide after he could no longer endure the pain, following a brutal medical “assault” during which his pain physician injected several simultaneous steroid injections. His sister testified at the FDA hearing about the loss of her brother, and his tortuous life following the injections up until his death.
We lost yet another arachnoiditis friend to suicide as he suffered intractable pain, bowel and sexual dysfunction: http://www.thenationaltriallawyers.org/2014/03/2-88m-med-mal-man-suicide-pain/
We watch in horror as patients are coerced to undergo epidural steroid injections (over prescribing) because regulatory agencies are not addressing the underlying problems — driven by profit motives to do procedures, combined with the war on opioids. Unfortunately, the Montana Board’s attitudes towards opioids are now (indirectly) resulting in more patient harm. Patients are left with interventional pain practices, primarily ESIs and spinal implants. Patients are also coerced to undergo invasive “diagnostic” steroid injections prior to spinal surgery.
We suggest you take the time to watch videos produced by harmed patients as many rely on
high powered opiates to function. Their stories are all too familiar to us — denial of harm — then difficulty achieving an honest diagnosis:
https://www.youtube.com/watch?v=Of06usrj-tA
http://artforarachnoiditis.org/category/creative-non-fiction/survivors-stories/
http://www.cklaurence.com/epidurals.html
Some physicians in Missoula deny that Arachnoiditis even exists. We find this ironic now that the federal government (FDA) and Pfizer acknowledge it. It is grossly misdiagnosed in Montana. Patients who suffer are subjected to more abuse and denial of appropriate medications to treat pain. Clinical descriptions and case reports were presented in Practical Pain Management and Neurology Now:
http://www.practicalpainmanagement.com/pain/spine/arachnoiditis-part-1-clinical-description
http://www.practicalpainmanagement.com/pain/spine/arachnoiditis-part-2-case-reports
http://journals.lww.com/neurologynow/Fulltext/2014/10050/Agony_and_Arachnoiditis__Named_after_its.12.aspx
Montana is ground zero on this national debate. Many pain patients are misdiagnosed then accused of being addicts. The shortage of opioids – and the targeting of physicians who prescribe – is resulting in a national and state health care crisis, and Montana is in the midst of this national debate. Addicts will always find an available drug, but legitimate pain patients are thrown under the bus and left to suffer:
http://nationalpainreport.com/montana-becomes-ground-zero-in-the-opioid-debate-8825459.html
http://nationalpainreport.com/a-new-approach-to-prescribing-narcotics-8825780.html
Our request to the Montana Board of Medical Examiners
First, we ask that you dismiss any negative action(s) against Dr. Mark Ibsen because he is not the source of the problem in Montana. We think you need to be aware that Dr. Ibsen is not our physician, but it is a small world now, thanks to social media. Chronic pain patients are all in this together.
Second, we ask the Montana Board of Medical Examiners to investigate the alarming trend to coerce pain patients to undergo invasive procedures before physicians will prescribe medications. Interventional pain physicians are harming patients then abandoning them when they do not submit to more profitable invasive spinal procedures. We previously brought this to the attention of the Board as it is a serious public health issue.
Physicians must provide true informed consent to their patients. This includes sharing details regarding the April 2013 FDA warning: http://www.fda.gov/Drugs/DrugSafety/ucm394280.htm . It is also important that patients understand that all steroids are being used “off-label” when administered by the epidural route. After all, we have all been warned about the addictive nature of opioids.
It is critical that patients understand the potential risk of arachnoiditis (listed on Depo-medrol and Kenalog datasheets) before they submit to an ESI. If the Board had taken this action years ago, things would have turned out differently for us. Arachnoiditis is the suicide disease that often results in patients considering their exit as they lose everything to hellish pain; especially in the current climate as many no longer have access to appropriate doses of opioids necessary to control pain.
We are grateful to Dr. Ibsen for bringing this problem (access to pain control) from out behind the White Wall of Silence. We fear that if you sanction Dr. Ibsen, then more pain patients will either be abandoned or forced into harmful procedures. We have a front line perspective and hope you will listen to Montana patients as you address the source of the Big Pain problems in the Big Sky country.

Sincerely,
/s/ Terri Anderson
Terri Anderson
Injured Worker and Patient Advocate
Arachnoiditis Society for Awareness and Prevention A.S.A.P.
Hamilton, Montana

/s/Gary Snook
Gary Snook
Arachnoiditis Survivor and Patient Advocate
Arachnoiditis Society for Awareness and Prevention A.S.A.P.
Lolo, Montana

/s/ Terry Conyers
Terry Conyers
Arachnoiditis Survivor (Undiagnosed)
Hamilton, Montana

One Response

  1. Thank you for your excellent letter. I hope it is circulated to every congressman from every state and our federal government. There is already considerable research that reducing the number of opioid prescriptions had led to an equal INCREASE in heroin overdoses. People in intractable pain will do almost anything for relief.

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