Advocacy Resources

The Important Questions to Ask Your Neurosurgeon [Revised]

Published: 16 September 2023
Written by CBAdmin
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Categories: Acquired Chiari Malformation, Advocacy Resources, Atlantoaxial Instability, Comorbidities, Craniocervical Instability, Ehlers-Danlos Syndromes, Empty Sella Syndrome, General Information, Heritable Disorders of Connective Tissue, Hydrocephalus, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Intracranial Hypotension, Tethered Cord Syndrome

Most Chiarians go to see a surgeon with an expectation of them being knowledgeable in their field. However, while they might be a neurosurgeon, their knowledge of Chiari and its comorbid/pathological conditions might not rank high in their practice. Make the most of your initial appointment by interviewing them and what they really know about Chiari Malformations. Be cautious of inflated success rates. Chiari decompression in general offers a just over a 50% success rate (which means it has a nearly 50% failure rate). Surgeons that claim a 100% (or near 100% success rate) are usually not basing their success on how their patients feel afterward, it is based on if they were successful with the aspects of the surgery:
         Removal of the occipital bone ✓
          Opening the dura and adding the patch/graft ✓
          Laminectomy ✓
          Cauterization/resection of cerebellar tonsils ✓

WE DESERVE BETTER THAN THAT!

HERE IS A LIST OF CHIARI QUESTIONS WE RECOMMEND ASKING AT YOUR FIRST NEUROSURGERY APPOINTMENT:

General Questions:

Intracranial Hypotension (low pressure) Questions:
*Article to help you understand CSF Leaks & Intracranial Hypotension prior to your appointment.
If you have SYMPTOMS OF LOW INTRACRANIAL PRESSURE and/or suspect a cerebrospinal fluid leak, we recommend asking the following questions:

  • S.E.E.P.S.
    • Looking at my brain scan, do you see any Subdural fluid collections?
    • Looking at my brain scan, do you see an Enhancement of pachymeninges?
    • Looking at my brain scan, do you see an Engorgement of my venous structures? Should we do an MRV to make sure?
    • Looking at my brain scan, does my Pituitary appear to be enlarged?
    • Looking at my brain scan, does my brain appear to be Sagging?
  • Looking at my corpus callosum:
    • Does there appear to be a depression?
    • Is there an inferior pointing of the splenium?

If he/she answers affirmatively to any of the above S.E.E.P.S. questions, ask: 

  • What should be done to find/repair a potential leak?
  • Are you aware that it is common for CSF Leaks to not show up on MRI?
  • Are you willing to do a CT Myelogram and/or a digital subtraction myelogram, if I develop symptoms of a leak and none can be found on MRI?
  • Are you aware that it can often take multiple epidural blood patches to try and seal a leak, and sometimes when a blood patch fails to work, a surgical dural repair might be necessary?

Intracranial Hypertension (high pressure) Questions:
*Article to help you understand Intracranial Hypertension prior to your appointment.
If you have SYMPTOMS OF HIGH INTRACRANIAL PRESSURE, we recommend asking the following questions:

  • Looking at my brain scan, do I have cerebrospinal fluid in my sella turcica (Empty Sella Syndrome)?
  • Looking at my brain scan, do you see any evidence of my optic nerves are swollen (papilledema)?
    • If so, should I be referred to a neuro-ophthalmologist?
  • Looking at my brain scan, do my lateral ventricles appear small or flattened?
    • If so, do I need to have my pressures checked?
    • What are the symptoms of a CSF Leak, should one develop?
      • What is your plan of action if I should develop these leak symptoms?
      • Are you aware that it is common for CSF Leaks to not show up on MRI?
      • Are you willing to do a CT Myelogram if I develop symptoms of a leak, and none can be found on MRI?
    • Should a leak be found, are you aware that it can often take multiple epidural blood patches to try and seal a leak?

Tethered Cord Questions: 
*Article to help you understand Tethered Cord: Sorry, Coming Soon.
If you have SYMPTOMS OF TETHERED CORD, we recommend asking the following questions:

  • Looking at my brain/cervical scan, does my brainstem appear to be elongated?
  • Looking at my cervical scan, does my spinal cord appear to be stretched?
  • Looking at my lumbar scan, does my conus reach my mid/low L2?
  • Looking at my thoracic and lumbar scan, does my spinal cord appear to be pulling to the back, or one particular side?
    • If so, should we do a prone MRI to see if it has actually adhered to that side?
  • Looking at my lumbar scan, do I appear to have fatty tissue inside the epidermis?
    • If the answer to any of these questions is affirmative, do you suspect that I have a tethered spinal cord?
    • If so, should we plan for a Tethered Cord Release before or soon after decompression surgery, so the likelihood of a failed decompression is reduced?
    • If I have urological issues, can I get a referral for urodynamic testing to rule out any other potential causes of my urological issues?

Craniocervical Instability (CCI) & Atlantoaxial Instability (AAI):
*Article to help you understand CCI & AAI prior to your appointment.
If you have SYMPTOMS OF CRANIOCERVICAL INSTABILITY or SYMPTOMS OF ATLANTOAXIAL INSTABILITY, we recommend asking the following questions:

  • Looking at my brain/cervical scans, what are the measurements of my clivoaxial angle and Grabb-Oakes?
  • Do these measurements meet the diagnostic criteria for Craniocervical Instability?
  • Looking at my flexion and extension imaging, how many millimeters of translation are there between flexion and extension?
  • Does Chamberlain’s Line cross my odontoid? If so, does it cross at a level that would indicate Basilar Invagination?
  • Looking at my rotational imaging, what is the percentage of uncovering of the right and left articular facets on rotation?
  • Do the percentages from my rotational imaging meet the diagnosis criteria for Atlantoaxial Instability?

IF A DIAGNOSIS CRITERIA IS MET IN ANY OF THE ABOVE, WE STRONGLY RECOMMEND THAT YOU WAIT ON DECOMPRESSION AND PURSUE THE TREATMENT OF SAID CONDITION(S) AND THAT OF EHLERS-DANLOS SYNDROME, AS EACH OF THESE CONDITIONS CAN BE PATHOLOGICAL TO AN ACQUIRED CHIARI AND EACH IS A STRONG INDICATOR THAT A CONNECTIVE TISSUE PROBLEM EXISTS. 

*The questions in this article will periodically change as we are able to expand our recommended questions.

*Original version released September 2018, revised 2023.

Palliative Care: An Essential for EDS & Chiari Families

Published: 23 October 2018
Written by Michelle Cole
No comments
Categories: Advocacy Resources, Chiari Action Network (C.A.N.), General Information

When I was first diagnosed with Chiari Malformation, I believed everything that my neurosurgeon told me. I was originally diagnosed with a Chiari 1 Malformation. I was told that it was congenital and due to my mother either using drugs or not getting proper prenatal care, which was crushing to hear, but not all that unlikely since I was born in the early 1970s. Little did I know, that these assumptions weren’t based on my findings, but on what textbooks have said since before the advent of the MRI in the early 1980s. Sadly, the percentage of Chiari patients that are given these same faulty assumptions remains near 100%. It didn’t take much time after my decompression surgery for me to realize, that it wasn’t quite as easy or cut-and-dry as it had been made out to be. When you have a connective tissue disorder, that is the root cause behind your Chiari diagnosis, the risk of postoperative complications is high, especially when pathological conditions went undiagnosed and untreated when the decompression was done. The difficulties of having a genetic mutation that can cause problems throughout your entire body, can make a patient seem like a hypochondriac, and that is exactly what most doctors think when they have a subpar understanding of Ehlers-Danlos Syndromes. When something goes wrong structurally, it can cause a cascading effect that manifests throughout the body. We go into the Chiari fight understanding that something is wrong with our brain and neck, but when it crosses over to problems with the autonomic nervous system (for instance), we don’t realize that the continued compression on our brainstem is why our hearts are now beating so fast, why we are now so short of breath, or why we are having fainting spells. We find ourselves wishing for someone, or a panel of experts to help us navigate through it all. While it is still far from the panel that we really need, Palliative Care can offer help with some essentials.

What is Palliative Care?

Palliative Care (pronounced “pal-lee-uh-tiv” care) is a subspecialty of medical care, where an interdisciplinary team of professionals (both medical and social) are committed to helping provide “relief from symptoms and stress” for patients with serious, life-altering illnesses, and their families. [1] Palliative Care is “supportive care,” by professionals committed to you as a patient with a serious illness! Your Palliative Care Team generally consists of a Palliative Doctor, a nurse, pharmacist, social worker, nutritionist, and a chaplain [2] (all as needed). Together, they will seek to:

  • Ease symptoms and/or help control pain to relieve suffering
  • Help improve your quality of life
  • Help coordinate with your care team
  • Assist with stress, fears, anxiety, and/or depression in the patient, caregiver, and/or family
  • Help you create a plan for end-of-life care (directives)

 

Benefits to Palliative Care:

  • Both Chiari Malformations and Ehlers-Danlos Syndromes are relatively complex. Both conditions can spur a vast array of symptoms. One of the objectives of your Palliative Team is to help you find a way to alleviate symptoms and/or help you with coping mechanisms through them.
  • Because Palliative Care is designed for patients with “serious” medical conditions, being accepted as Palliative Care patient, means that they recognize the seriousness of our condition. For those of us that have spent years/decades with our symptoms being dismissed, this alone is no small thing.
  • The CDC Guideline for Prescribing Opioids, as well as many of the state laws regarding the same, have exemptions for palliative patients (along with cancer and end-of-life patients). Doctors can still decide to discontinue prescriptions, taper your prescriptions, or require an “opioid contract,” but it will be 100% by their choice, and not due to CDC Guidelines and laws. Although, you may have to tell them that. [4]

 

Misconceptions Surrounding Palliative Care:

  • While it is outlined in the U.S. Department of Heath & Human Services (NIH) under the “National Institute on Aging” (NIA), there is NO AGE CRITERIA to qualify as a Palliative Care patient. [1]
  • While Palliative Care is frequently listed beside Hospice Care and/or End-of-Life Care, there is no national requirement for a patient to be in an end-of-life situation (or even an expected early demise). [1] Hospice care falls under palliative care, but palliative care expands beyond the scope of just hospice. Palliative care may begin at any stage of a serious illness. [2]
  • You can continue treatments (even curative treatments) with your personal doctor/specialist, while receiving palliative care. There is no “incurable condition” requirement for a serious condition under palliative care. [2][3] In fact, a patient can qualify and receive Palliative Care whether their illness is curable, chronic or life-threatening. [2]
  • You do not need to wait until your condition reaches a certain level of severity, you can start with Palliative Care at any stage of your illness. In fact, Palliative Care works best when it begins as early as possible in the illness, as some symptoms may be avoidable or more manageable if addressed early.
  • Palliative Care does not replace or override your pain management doctor, or any of our doctors for that matter. Instead, we give them permission to discuss our case with our medical professionals, so they can help coordinate our care, especially in regard to our pain/suffering and quality of life care.
  • Your Palliative Care Team will not consist of the medical specialists that we specifically need, but they can help navigate you to the type of doctor you may need and discuss these recommendations with your doctors.

 

Problems Surrounding Palliative Care:

  • Primary Care Doctors (who are supposed to be offering referrals to Palliative Care for their patients with serious medical conditions) often fail to fully understand the spectrum of Palliative Care. Because of their faulty understanding, most of us are never offered Palliative Care, and when we request it, we are often told that it is equivalent to hospice care or set aside for hospice patients, and therefore they believe that we do not qualify. THEY ARE WRONG!
  • Our medical professionals often fail to recognize just how “serious” of a condition and life-altering Chiari and EDS really are (on us as patients and on our families).
  • Not all insurance companies cover Palliative Care. Because some insurance companies fail to see the seriousness of our conditions, qualifying may be difficult. Private insurance and HMOs are more likely to offer Palliative Care. Different states have different policies regarding the level of Palliative Care (if any) they offer. [2] If cost concerns are an issue, the social worker on your Palliative Team can assist you in ways that might help you qualify. [3]

 

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References:

1. “What Are Palliative Care and Hospice Care?” U.S. Department of Health and Human Services, National Institute on Aging, 17 May, 2017. <https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care>

2. “Frequently Asked Questions About Hospice and Palliative Care.” American Academy of Hospice and Palliative Medicine. <http://palliativedoctors.org/faq>

3. “Handout for Patients and Families.” Center to Advance Palliative Care. <https://getpalliativecare.org/handouts-for-patients-and-families/>

4. “CDC Guideline for Prescribing Opioids for Chronic Pain.” Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Unintentional Injury Prevention. 29 Aug, 2017 <https://www.cdc.gov/drugoverdose/prescribing/guideline.html>

How Much Are You Worth?

Published: 15 October 2018
Written by Mary Cremer
2 Comments
Categories: Advocacy Resources, Chiari Action Network (C.A.N.)

When a person suffers from a chronic condition, we sometimes equate our value to how we feel. Chiari, Ehlers-Danlos, CSF Leaks, Chronic Fatigue Syndrome, etc. all cause pain. Sometimes we tend to carry that pain along with us as baggage. If we carry our self-value as related to pain, we are more likely to let healthcare professionals bully us and eventually, all this baggage compromises the relationships that matter most to us. Well, it’s time to look deep inside ourselves and find our inner strength.

Take a step back and pretend for a moment that a loved one had the conditions you have. Imagine knowing all the struggles they have fought. Imagine them hoping for a diagnosis so that they could have a name to fight. Imagine them enduring countless appointments and procedures. Imagine them in pain and struggling to go to important events, so they are not letting people down. Imagine them doing hours and hours of research to find help. Now, stop for a moment and ask yourself a question. Would you call that person strong or weak? Really stop and think about it. They aren’t famous and probably not wealthy. I know what I would call them. I would call them the epitome of strength! I hope you would consider a loved one like that to be a super strong person too. Wouldn’t you have respect for them? Wouldn’t you wonder how they kept functioning and be in amazement of their abilities? Now stop again. This person we imagined as a loved one is now back to being YOU!!!

That’s right! YOU, with these chronic conditions, feeling as battered and bruised as you do, are like Superman or Superwoman. You have done more while enduring pain, than most people do that are completely healthy!

Now, how do you value your life? You should value your life as a beautiful person that finds strength deep down inside. You should find joy in small things and accept love that is given to us as someone that is deserving of such love. Let them love you and cherish the special moments you have in life. Value your health and fight for what you feel is the right treatment. Don’t be afraid to ask questions of your medical professionals and fight to get back and keep whatever quality of life that you can, because you matter! But we must learn to fight right! Not with fists or harsh words, but by articulating the extent of our pain at every level allotted to us!

When your doctor provides substandard care, he subjects himself/herself to a formal complaint. Misdiagnosis or delayed diagnosis that leads to incorrect treatment, delayed treatment, or no treatment at all, can cause you harm and is complaint worthy. Overprescribing, underprescribing, and failure to prescribe adequate treatment for your condition(s) are also grounds for a formal complaint.

 

Preparing to make your complaint(s):

• Calmly articulate your condition(s) and how difficult treatment has been on you and your family thus far.

• Explain the treatment options you have been presented with, the options you have tried and why they should not be considered efficient treatment for you, and why you feel that the option being declined to you is the best course of treatment for you personally.

• Directly ask the recipient at each level for help and express your desire to resolve the issue at their level.

 

Preparing to send your complaint:

• Write the department and/or division head and request a meeting with him/her about it.

• Write the members services of the hospital or medical group that you are a part of and request an internal review.

• If the internal review failed to bring about the action that you need, request an external review.

• File a complaint with the state medical board that the doctor is in. Be sure to provide all supporting evidence that you have. They will enter your complaint into database and review your case to determine if disciplinary action should be taken against your doctor. Even if the state medical board doesn’t agree with you, it will go on record and might be reviewed again when/if additional patients make similar complaints about that doctor.

• Contact your state legislators asking for their help. While they usually wont respond to you directly, they have state aides that are armed with lists of resources to help. If state laws are a reason behind the lack of treatment you are getting, let them know how these laws are having a negative impact on the quality of care that you are receiving in their state.

• Contact your federal legislators asking for help at a national level. You might feel intimidated, like they are not going to care about what is happening with a sick constituent, but the truth is that you are not the only patient experiencing these problems, and their ability to hear from multiple patients with similar problems can raise red flags. Federal legislators are officials paid to represent your state at a federal level. If federal laws are a reason behind the lack of treatment you are getting, let them know how these laws are having a negative impact on the quality of care that you are receiving.

• Write letters to all government agencies, such as the Centers for Disease Control (CDC), Federal Drug Administration (FDA), etc. They might not do anything specifically about your doctor, but they are responsible (at least in part) for many of the rules and regulations governing aspects of our care. Let them know how you’re doing under the policies their responsible for. 

• Write the United States Attorney General and the President of the United States and let them hear directly from you on how these laws, rules and regulations are affecting your health care.

The bottom line is, everything has been accomplished for Chiarians, has been done by us working together. They might not care about one letter, but how about tens of thousands? Let’s unite and fight for our rights to proper medical care, including proper pain relief, while we can!

You can do this! Together we C.A.N. do this!

 

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US Government Officials Endorse Inhumane Torture of Chronic Pain Patients

Published: 28 May 2018
Written by Mary Cremer
No comments
Categories: Advocacy Resources, Chiari Action Network (C.A.N.)

TORTURE EXISTS IN 2018 IN THE US AND IT IS SPREADING GLOBALLY. IT’S HAPPENING IN MEDICAL FACILITIES. IT’S HAPPENING TO CHRONIC PAIN PATIENTS (CPP), PEOPLE WHO ARE RECOVERING FROM SURGERY AND TRAUMATIC INJURY AND PEOPLE WITH PAINFUL, INCURABLE DISEASES. THE GENERAL ASSEMBLY OF THE UNITED NATIONS HAS GONE ON RECORD STATING THAT, “UNTREATED PAIN IS TANTAMOUNT TO TORTURE OR CRUEL, INHUMAN OR DEGRADING TREATMENT OR PUNISHMENT.” [1] BY DENYING PAIN CONTROL TO PATIENTS WITH ACUTE OR CHRONIC PAIN, WE ARE LOSING A BASIC HUMAN RIGHTS ISSUE.

Now is the time for us ALL to UNITE and take ACTION!

“Opioid Crisis” is a new buzz term being overused by national news and government officials to evoke a negative feeling about a drug that was created for helping people. The definition of “crisis” by Merriam-Webster dictionary is partially defined as “an unstable or crucial time or state of affairs in which a decisive change is impending; especially: one with the distinct possibility of a highly undesirable outcome.”

There is much ignorance from our government officials. One example is from the US Attorney General, Jeff Sessions. In a visit to Tampa in February, Sessions remarked, “I am operating on the assumption that this country prescribes too many opioids. People need to take an aspirin sometimes and tough it out a little.”[2] This statement underlies the lack of understanding of chronic pain and its detrimental effects among the government officials who have been tasked with solving this opioid crisis.

President Trump made this comment on March 19, 2018 and was quoted in an article by NPR: “Whether you are a dealer or doctor or trafficker or a manufacturer, if you break the law and illegally peddle these deadly poisons, we will find you, we will arrest you, and we will hold you accountable.”[3] While he is attacking the problem in multiple ways, he still seems to want to go after the legal prescription side in this battle.

Sixteen senators (now 15, since Al Franken resigned) had approached the DEA and requested and received a 20% cut in production in legal opioids in 2018 after cuts in 2017, and they want more cuts in 2019. Less production of legal meds creates big problems. And the DEA and Sessions have responded to this request, proposing a new rule that would allow the DEA to reduce the amount of opioids that drug companies can manufacture and sell, if it believes that a company’s opioids are being diverted for misuse.[4] Meanwhile, hospitals are already experiencing a shortage of many injectable opioids used for surgical anesthesia and for the treatment of post-surgical, traumatic and disease-produced severe pain.[5]

There have been a lot of statistics used to sway opinions in this fight. A group of anti-prescription opioid zealots known as PROP (Physicians for Responsible Opioid Prescribing) have made claims about prescription opioids that most patients and doctors alike would disagree with. Members of PROP, including Andrew Kolodny, MD, an addiction specialist who serves as PROP’s executive director, have been very influential in the media and with government bodies alike. They were very involved with the formation of the 2016 CDC Opioid Prescribing Guidelines. In a 2015 Q&A for the Kolmac Outpatient Recovery Center, Kolodny said, “Many Americans are truly convinced that opioids are helping them. They can’t get out of bed without them.”[6] And in an interview with The Fix in 2016, Kolodny was quoted as saying “Heroin users will use some of the exact same language pain patients use to explain how opioids help them. They wake up and feel agonizing pain, and they take their opioid and their pain becomes bearable.”[7] While PROP and its members are busy trying to convince the public and the US government that opioids are almost never appropriate for chronic pain and that patients who use long-term prescribed opioid therapy are tantamount to addicts, the science seems to disagree. In a recent white paper published by the Alliance for the Treatment of Intractable Pain, a review of the applicable research laid out the case for opioid prescriptions for chronic pain being both effective and posing a very low risk for addiction.[8]

In addition, the Centers for Disease Control (CDC) continued to count all deaths with legal or illegal opioids in a body, as an opioid death and using these statistics as an impetus to develop their 2016 guidelines, as well as listing them on their website to be cited by the media and other government officials who were tasked with developing policies to curb the overdose crisis. Using these statistics, it is no wonder that government officials came away with a belief that prescribing fueled the overdose crisis. However, in an article in April 2018 in a publication of the American Public Health Association, four CDC officials quietly admitted that the CDC statistics were miscalculated, and over-inflated by about double.[9] So far, the CDC itself has not officially admitted that the numbers are wrong, and continue to stand by their 2016 prescribing guidelines.

The PDMP (Prescription Drug Monitoring Program) was an answer government officials put in place to ensure that legal drug users were brought into compliance with the new standards being enforced on doctors and pharmacies. The legal prescription opioid users that still have access to pain medication sign contracts, subject themselves to random drug testing and agree to use one pharmacy. Well, the reduction in production of opioids in 2018 has caused many pharmacies to have a drug shortage. Many pharmacists are also reticent to fill opioid prescriptions out of fear of the DEA, or worry about fueling the opioid crisis because of the false media narrative. Pain patients drive to the doctor’s office to pick up their paper prescription, take it to their pharmacy and wait. If that pharmacy is out of your medication, you now go to another pharmacy and this trend continues in hopes of a refill. Then we need to call our doctor’s office back and let them know we filled our prescription at another location. This is a lot on people with chronic pain.

There is also a negative stigma attached to having to take pain meds. Many chronic pain patients take prescription opioids to continue meaningful work. This could be a huge problem because they are afraid to speak out, afraid of losing their job, or at least bringing suspicion upon themselves from employers. Many patients are afraid that if those around them know they take pain medication, they will be seen as addicts. But it is time to brush off the stigma and the fear and to stand up for our rights to access proper and effective medical treatment. If we don’t, we may lose access permanently and keeping our jobs, social lives, and other important activities and relationships will not be possible due to disability from pain.

Doctors that want to be doctors are now caught up wasting time in government “guidelines” or laws and pressure from insurance companies that do not want to cover pain control prescribed by our doctors. Many doctors who have continued to prescribe despite the current hostile regulatory environment have been threatened, raided, and even arrested by the DEA.[10] Our doctors are having to choose between upholding the Hippocratic Oath and keeping their ability to practice medicine and earn a livelihood altogether.

On April 3, 2018, the Centers for Medicare and Medicaid Services adopted a new policy governing opioid prescriptions for Medicare patients. While they backed down from a proposed “hard limit” where opioid prescriptions above 90 mg MME would be rejected at the pharmacy and could only be overridden by the insurer, they did end up passing a 200mg MME hard limit, and a “soft edit” at the 90 mg MME mark. This requires pharmacists to speak with the prescribing physician about the appropriateness of the dose for all prescriptions above 90MME. The pharmacist must then document this conversation and may fill the prescription at their discretion. The new rule also limits all new opioid prescriptions to 7 days, meaning Medicare will no longer pay for new opioid prescriptions that last more than 7 days, regardless of the circumstances. Many Chiari and EDS patients undergoing major surgery such as decompression or fusion, will no longer be able to receive more than a week of post-surgical pain medication without returning to their doctors for a new prescription. And patients who develop severe chronic pain in the future may not be able to get appropriate treatment for their pain. The only thing that kept CMS’ original proposal of a hard limit at 90mg MME was a severe backlash resulting in hundreds of strongly worded comments on their public docket from patients and physicians alike.[11] It is proof that our voices do matter and that we can make a difference when we speak out.

Despite some backlash from the chronic pain and medical communities, the government pushes forward with their agenda. Some states have lost their right to proper pain control and many are being threatened. It is time for those patients who have been sitting on the sidelines waiting for someone else to fight this battle for them, to rise and make some noise. It’s time for ALL of us to unite to make changes for ourselves and the future Pain Patients and our children. Imagine our children, inheriting these conditions from us and suffering the same or worse pain as we do, and having zero access to effective pain treatment because we allowed our government to take away one of our most effective treatment options!

What we all need to do is contact our elected officials. It easy to type up your email regarding your story and what pain meds mean to you or loved ones. You can look up your elected officials email address and copy and paste your email and send to many people. The elected official I spoke with said they have not heard from Chronic Pain Patients. Please take time and do this. You can send out emails laying down from your bed. You can also follow our CALL TO ACTION posts, which will inform you of key legislation and administrative actions and how you can act to make sure that our voices are heard.

My voice is one, but if many are sent in, they might listen. There is strength in numbers and together, we CAN make a difference! Please help.

 

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References:

1 Tennant, Forest. “Editor’s Memo October 2017: United Nations Says Untreated Pain Is ‘Inhumane and Cruel.’” Practical Pain Management, PracticalPainManagement, <www.practicalpainmanagement.com/treatments/pharmacological/opioids/united-nations-says-untreated-pain-inhumane-cruel>.

2Slattery, Denis. “AG Sessions Says Patients Should Take Aspirin or Suffer through Pain to Prevent Opioid Addiction – NY Daily News.” Nydailynews.com, New York Daily News, 8 Feb. 2018, <www.nydailynews.com/news/national/sessions-patients-aspirin-fight-opioid-crisis-article-1.3808114>.

3Horsley, Scott. “President Trump Vows To ‘Liberate’ U.S. From Opioid Crisis.” NPR, NPR, 19 Mar. 2018, <www.npr.org/2018/03/19/594999711/president-trump-vows-to-liberate-u-s-from-opioid-crisis>.

4Anson, Pat. “Sessions Wants More Cuts in Opioid Production.” Pain News Network, 17 Apr. 2018, <www.painnewsnetwork.org/stories/2018/4/17/sessions-wants-more-cuts-in-opioid-production>.

5 Bartolone, Pauline. “The Other Opioid Crisis: Hospitals Are Running Short of Powerful Painkillers.” Los Angeles Times, Los Angeles Times, 16 Mar. 2018, <www.latimes.com/business/la-fi-opioid-painkiller-hospitals-20180316-story.html#nws=mcnewsletter>.

6 Kolodner, George. “Q&A: Dr. Andrew Kolodney, Chief Medical Officer, Phoenix House.”Kolmac Outpatient Recovery Centers, 14 Dec. 2015, <www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/>.

7Siegel, Zachary. “Pain Patients Fear the Future Amid Opioid Crisis.” The Fix, 27 Nov. 2018, <www.thefix.com/pain-patients-fear-future-amid-opioid-crisis>.

8Lawhern, Richard A. “Prescription Opioids and Chronic Pain.” The Alliance for the Treatment of Intractable Pain, Mar. 2018, <www.atipusa.org/2018/04/02/atip-white-paper-on-prescription-opioids-and-chronic-pain/>.

9Seth, Puja, et al. “Quantifying the Epidemic of Prescription Opioid Overdose Deaths.”American Journal of Public Health, 7 Mar. 2018, <www.ajph.aphapublications.org/doi/10.2105/AJPH.2017.304265>.

10Bernstein, Lenny. “DEA’s Opioid Crackdown Brings Arrests of Prescribers, Pharmacists.” The Washington Post, WP Company, 2 Apr. 2018, <www.washingtonpost.com/national/health-science/deas-opioid-crackdown-brings-arrests-of-prescribers-pharmacists/2018/04/02/64ded32a-368f-11e8-8fd2-49fe3c675a89_story.html?noredirect=on&utm_term=.ef5781020422>.

11Roubein, Rachel. “CMS Tweaks Opioid Proposal after Backlash.” TheHill, The Hill, 3 Apr. 2018, <www.thehill.com/policy/healthcare/381493-cms-tweaks-opioid-proposal-after-sparking-backlash>.

 

You The Advocate: Getting Started With Self Advocacy

Published: 19 January 2018
Written by Director of Patient Advocacy Resources
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Categories: Advocacy Resources

Self-advocacy starts with believing that you are worthy of love, respect, dignity, and autonomy. This belief will animate everything you do and will affect how others will believe, perceive, and respond to you. It will affect the degree to which others will be able to help you, including your medical team and support systems. Other people can only help us to the degree that we value ourselves and are willing to invest in our own personal well-being. Your self-image and appreciation will affect how well you are able to speak up for yourself and your rights as a well-deserving person and patient.  You deserve the time to express your concerns and ask questions, with an expectation of being listened to, supported, and respected without prejudice. And you have a right to be given all of your information regarding your health, so you can make informed decisions regarding your health and livelihood. Unfortunately, we don’t always get that from our medical professionals or the government agencies that we spend a lifetime paying into for such provisions, so we must be ready to fight for it!

 

EMPOWER YOURSELF THROUGH EDUCATION

Learn and understand your diagnosis. Researching and educating yourself is the single most important tool available to you in self-advocacy. Most of the information available is going to be found online in various articles, websites, videos, and within online support groups. Finding accurate, up-to-date, and reputable sources is paramount. Here at Chiari Bridges, we try to reference the studies and peer-reviewed articles behind our information, so you know the official sources that the information came from and will be better able to justify your requests and concerns to your doctors. Regardless of your source, be prepared to find a lot of conflicting information. These contradictions mainly exist because Chiari and its co-morbid conditions are being researched like never before, so it’s an exciting time, but that fails to give much comfort to those having to fight with their doctors on the existence of every symptom they face.

Know your rights as a patient and your doctor’s legal responsibilities. Rights and responsibilities are often governed by state and federal laws and are outlined and included in the paperwork given to you from medical practices, health care systems, hospitals, and facilities. Your providers will likely require you to sign that you agree to and understand them. In doing so, these are legally binding for both parties. Thus, you will want to make sure you understand them fully before signing them and make sure you get a copy for your own records (if they don’t give them to you, don’t be afraid to ask for a copy).

Learn and understand your health insurance. Know what your policy does and does not cover. Become familiar with which doctors, medical services, and facilities are covered. Find out about copays, deductibles, out-of-pocket costs, and other relevant information. Find out if your policy includes out-of-network benefits and associated costs; including out-of-state benefits. If no out of network/or state benefits exist, find out if exceptions can be made. Almost all insurance plans do have some form of exceptions and/or appeals process for this very purpose. There are commonly two stages of appeal, an internal review (your appeal is reviewed in-house) and an external review (where you are specifically asking for a review made by an outside organization that has not been a part of your provision of care and has no conflict of interest).

Learn about Advance Directives, Living Wills, Durable Healthcare Power of Attorneys, etc. You will want to familiarize yourself with all of these and decide what, if any, is right for you.

 

EMPOWER YOURSELF BY DEVELOPING SKILLS AND ACCESSING TOOLS

Communication Skills and Tools. Learning to know when and how to communicate your needs and desires to others is important, especially when you have a limited amount of time with your doctor. Brevity, clarity, relevancy, problem solving, negotiating and preparation are key skills and tools. It might be beneficial to sit down beforehand and write the specific points that you want to address, and what your ultimate goal is in the appointment. Maintaining a respectful dialogue is always of utmost importance. Keeping your emotions under control is crucial.  Otherwise, your doctor might take you less seriously or assume your symptoms stem from psychological causes.

Medical Records. As a patient, it is important to always obtain a copy of your medical records and review them for accuracy. It was once thought amongst medical professionals that a patient’s medical records were solely for doctors to communicate amongst themselves. Some medical professionals still hold to this antiquated ideology and become obviously disgruntled that you have chosen to exercise your patient right to not only obtaining your medical records but also, demanding they are 100% accurate. What is listed in those medical records will be used to treat you. It is important they are accurate and are corrected if they are not.

Keep copies of all imaging and radiology reports. Images are not kept forever, nor are other medical records. Sometimes doctors do not tell you some of the things found in your imaging/reports and other tests because they deem them “incidental” or irrelevant. Sometimes, doctors miss what is obviously clear altogether. Many Chiarians go through years of misdiagnosis before properly being diagnosed. Often, a look back through your medical records will show patterns and assist in the discovery, diagnoses, and treatment.

Patient Portals. With the advent of portals being used in many practices and facilities, patients have easier, free access to many of their medical records now. The same rules apply to the information retained in the portals in regard to how long they are kept there. Any conversations you might have with your provider through the portals should be saved as well.

Organization and Preparation. Every person has their own way of “organizing.” This extends to your medical records keeping as well as preparation for appointments. There are some free online resources to help you with this organization. Some like to make a “chart” for their medical records by creating a binder with tabs. Some use digital charts/record-keeping tools for online free or for purchase. Many apps for phones exist to help as well. However you decide to organize is up to you, but is an invaluable tool available to arm and equip yourself in self-advocacy.

Self-Care and Coping Skills. We often underestimate the necessity of self-care; as well as the power of developing positive, healthy coping skills and techniques. Self-care is pretty standard for all: getting proper nutrition, rest, appropriate and safe exercise, taking meds faithfully, taking time for recreation and refreshment, and tending to the beauty that is your body, mind, and spirit. Everyone has ways they “cope” in life in general and within the framework of chronic illness. It’s important to find the ones that work for you.

 

EMPOWER YOURSELF BY FINDING THE RIGHT DOCTOR(S)

Self-Education. Self-education precedes the ability to find a good doctor. If you are not aware and knowledgeable about your diagnoses and disorders, you will not recognize whether a doctor is the right one for you. Educate yourself on your conditions and on what your potential doctor has published on your conditions: What are their credentials, experience, affiliations, number of cases they have treated, and specialties and sub-specialties? Look for any official publications and scientific journals or other research that your provider may have written. Additional information can be found online through state records and other sources regarding your physician.

Ask family, friends, and other medical professionals. Find others who have PERSONAL FIRST-HAND doctor/patient experience with the potential provider. Keep in mind a doctor can be a great fit for one patient but not for another. You can also ask for the opinion of your present doctors or other medical professionals.

Getting 2nd Opinions and When to Find Another Doctor. It is never wrong, always wise, and completely within your rights as a patient to seek a second opinion (or more). If you are facing a potential surgery or procedure that could be risky and/or permanent, it is prudent to get multiple opinions. It is your right to ask for and change doctors at any time or facility. You do not need to give any reason nor explain yourself, though you will likely be asked to do so. Be careful not to burn bridges or become “blacklisted.” Always find a new doctor before leaving the old one.

 

EMPOWER YOURSELF BY DEVELOPING YOUR SUPPORT SYSTEM AND GETTING HELP. Being a self-advocate does not mean “going it alone.” Developing and surrounding yourself with a support system is vitally important and many consider it to be “their lifeline” to keep going.

Local or online support groups. Finding the right local or online group can be just as important as finding the right doctor and educating yourself. Remember, there is a lot of accurate and inaccurate info out there (even amongst our medical professionals). A support group is only as good the respect they have for you in your fight. If they respect the Chiari fight, it will be evident in the way they treat one another and in the accuracy of the information they espouse and share. Online groups each tend to have a different set of rules that members are expected to follow: some allow and encourage advice and recommendations amongst their members, and some do not allow it at all. Not every group will be the right fit for each Chiarian, but you can expect any good group to be kind, supportive, respectful, accurate in the information disseminated, gentle correction of inaccurate information shared respect of your autonomy, choices, and a zero-tolerance for bullying.

Workplace Support. There are laws that protect you and that can even provide assistance and support within the workplace that you should familiarize yourself with. The Family and Medical Leave Act of 1993 (FMLA) is a federal law in the United States requiring employers to provide employees with up to 12 weeks of job-protected, unpaid leave for qualified medical and family reasons annually; but you must file it as FMLA leave to get the protection.

School Support. There are programs and opportunities within schools that you should also familiarize and protect yourself with if your Chiarian is in school. In the United States, the US Department of Education has worked hard to incorporate federal laws to help reduce discrimination and increase structured programs to help ensure the success of students with disabilities. As a result, most schools, including colleges, have programs where students with disabilities can get special allowances for recording devices, note takers, removal of time limits on tests, etc. These programs are usually subsidized at a state level and have different names depending on your state, but a school counselor should be able to point you in the right direction. These protections may be limited in privately funded colleges and universities that do not receive any public funds.

Support and Assistance Programs. There are hosts of programs, assistance, and support to be found in nearly every local area (through county trustees, charitable organizations, and churches), as well as state and federal programs. Just are few examples of help available are assistance with mortgage, rent, utilities, food, clothing, medical bills, medical insurance, free or reduced-cost prescriptions, holiday assistance, back-to-school, free or reduced-cost dental clinics, pro-bono legal help, cash assistance programs, etc.

Professional Advocate Support. While self-advocacy is important, you might find that you are needing more help than you can accomplish alone. Managing your health can be confusing and overwhelming. Sometimes it can be hard to get your voice heard by the healthcare professionals around you. The healthcare system itself is very complicated. If you are having difficulty finding your way through the complex maze of healthcare, you might want to consider seeking the help of a professional advocate. There are hospital advocates, non-profit patient advocates, for-profit (employer-based) advocates, and independent advocates for you to turn to.

Family and Friends Support. Chronic illness can take a huge toll on relationships. We all want and need the love and support of our family and friends. Not everyone has this support, making it all the more painful. No two families or friendships are alike. If you find a lack of support amongst your friends and family members, seek to restore it and in the meantime, find another means of support as Chiari is not something you want to fight alone. Support groups are a good alternative means to help find the support you need.

Counseling Support. Sometimes we all find ourselves struggling to cope. Maybe we lack support or want to protect our relationships by not always talking about our problems to friends and family, yet need an outlet. Finding a therapist can be one of the best things we can do for ourselves. Doing so doesn’t mean you’re crazy or weak. It is a sign of strength and indicates that you value and respect yourself in every facet of your life; which brings us back to the reason we learn to self-advocate in the first place. Believe you are worth it – all of your body, mind, and spirit! If you ever find yourself in a life-threatening crisis, don’t be ashamed to contact a crisis hotline.

When to get a lawyer. If you believe you are the victim of abuse, harm, malpractice, or neglect, you may need to seek the counsel of a malpractice attorney. If you suspect your workforce rights have been are in danger of being violated, you may want to contact an employment lawyer. If you find yourself no longer able to work, seek a Disability lawyer. Elder lawyers can often be helpful too and are not just for the elderly. If any of your rights have been violated, it may be time to seek counsel.

Self-advocacy will empower you to know and speak up for yourself, make your own decisions, learn and exercise your rights and responsibilities, learn about your condition(s), and how to get accurate up-to-date information in order to make decisions concerning your care, treatment, and overall well-being. It will help you find the right doctors, support systems, options, resources, and get other help available to you. As you journey along in self-advocacy, you will grow both as a patient and a person. You will also discover many additional ways that self-advocacy benefits and empowers you, and in turn, you’ll be able to help pass those benefits on to others as well.

 

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