CB Departments Archives

Published: 1 November 2024

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:

How do you define a Chiari Malformation?
What do you believe causes a Chiari malformation?
- Are all Chiari malformations from a small posterior fossa?
- Do I have a small posterior fossa? If yes, how big is it? If size is unknown, was my posterior fossa measured? If not, why not? How did you come to the conclusion that I have a small posterior fossa?
- How common do you believe Acquired Chiari malformations to be?
Do you always recommend decompression surgery for all of your patients with herniated cerebellar tonsils? Why/why not?
In an average month, how many Chiari decompressions do you perform? How many tethered cord releases? How many craniocervical fusions? What percentage of your practice is spent treating patients with these connective tissue related conditions?
Looking at my brain scan, is any part of my “brainstem” herniated (below the posterior fossa)? If so, does that make me a Chiari 1.5?

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?
  - If yes, are you aware of the risks of developing a CSF Leak from a lumbar puncture?
- 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, Grabb-Oakes, and Harris Measurements?
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.

Published: 1 May 2024

Written by Michelle Cole

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Categories: Expressive Writings, Faith Through The Fire, Faith-based, Mental Health Resources, Testimonials, WorthTheFight

Some names have no meaning and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category. Despite the more popular acronym, WTF! stands for Worth The Fight!

The origins of our name began with someone that I love to the moon and back, who was struggling with depression. This person was cutting themselves and trying to mask their pain with drugs and alcohol, and attempted suicide before I realized what was going on with them.

Life isn’t easy for a Chiari family. From the moment that I was told that my head and neck pain wasn’t just pain, but something wrong with my brain, everything in our family changed. Everything became centered on me.

“Don’t stress mom out.” “Let mom rest.” “Can’t you see how much pain she’s in?”

Surgery came just weeks after diagnosis for me. It was in hopes that I could become the wife and mother that I once was, the wife and mother that my family so desperately needed me to be. Two years after decompression, I had a revision to fix a pseudomeningocele (leak) with an SP shunt (Subgaleo-peritoneal). It was about a month after this second brain surgery that I realized that there was much more going on in my house than I’d ever dreamed.

It was just after 2 am when there was a bone-chilling pounding on our front door. It was the kind of pounding that would awaken even the heaviest of sleepers – the kind of pounding that you’d never forget. My husband and I rushed to the front room, greeted by siren lights and multiple people shining flashlights into our windows. It was a firetruck, an ambulance, and the police. We opened the door and one of the officers informed us that they had reason to believe that our daughter had attempted suicide. Words could never express the feelings that I had as I ran desperately to her room unsure about what I’d find when I opened the door. She was alive, but incoherent and unaware of her surroundings. The officer intervened to assess her condition, asking if she was able to get up and come out of her room to talk. The one officer talked to her and another two pulled us aside to talk to us, as the paramedics stood by. Everything was surreal. How could I concentrate on hearing and answering questions when I didn’t even know if our daughter was going to live or die? The officer explained that she had called a friend after taking pills with wine or champagne. The friend told his mom and together they called the police while he continued talking with her. She had initially told this friend that she was in a park across town, so the police had been scouring the park looking for an overdosed teenage girl, and when they couldn’t find her, they pinged her cell phone which led them to our home just in the nick of time. My emotions raced. How could this be when she had come to our room earlier that night, looking tired, telling us how much she loved us, and that she was going to bed? (We should have known that something was wrong, but again, I had been so lost in my own world that I couldn’t see all that my children were going through at the time.) After assessing our daughter, the attempt was deemed “credible and in immediate need of emergency care,” and she was transported by ambulance to the county hospital emergency room.

My husband and I followed in our car. At the hospital, we were informed that she had taken multiple doses of my husband’s blood pressure medications and multiple doses of my opioids. The doctors said that the first concern was her heart, “if” she survived through the night. The next concern would be liver toxicity since the opioids all contained Tylenol. And that if she survived and made it through those steps and deemed stable, she would be held on a 5150 (Involuntary Psychiatric Hold). While we prayed at her side her blood pressure dropped down to the lower 50s/20s. We called for the doctor and they told us that there was nothing more they could do (it was too late to try to pump her stomach), she would either survive the night or wouldn’t. They told us to try to keep her awake, so we walked laps around the ER every single time her blood pressure dropped in an attempt to keep her awake. I don’t know how I held up my head that night, I was running on pure adrenaline at the thought of losing my only daughter. She survived the night and while we still had to wait for the toxicity reports on the liver tests, they allowed us to walk with her over to the Psychiatric Department of the hospital.

After a twenty-four-hour evaluation, our daughter was moved to a San Francisco hospital for a week-long intensive therapy program. We couldn’t visit her for the first few days. We were limited to scheduled phone conversations. At first, she just wanted us to go get her. It’s incredibly hard as a parent to be in a position where you legally cannot just take your child home. But we knew she needed help beyond what we could offer, and eventually, she realized that she needed that too.

Over the week, she worked on herself and we worked on creating a safer environment for her to come home to (they actually have a checklist when something like this happens involving a teen). I won’t go into all the details of how we tried to safeguard our home and family after realizing that Chiari hadn’t simply set out to steal just from me physically, but its attack extended to our entire family in every way. But there was a website that I happened by that really caught my attention.

I happened upon a story “To Write Love On Her Arms” by Jamie Tworkowski. It’s a story of a group of friends learning how to fiercely love a friend struggling with depression, addiction, self-injury, and suicide. They would write the word “LOVE” on her arms; the same arms that she had been carving the words, “FUCK UP” on. They figured that if she went to cut her arms again, she’d be reminded how greatly loved she really was.

Chronic pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids) can take a toll on us and how we think, how we see our future and the value that we see us having in this world. As we see ourselves become increasingly dependent on our family members, we see the burden that it places on them, and it hurts. We know that they say that we’re ‘not a burden,’ but we see it. When we hear those that we love, deny that a burden exists, we know they’re just saying that because they love us. “It’s nothing,” they tell us. IT’S NOT NOTHING! IT’S EVERYTHING! BECAUSE THEY MEAN EVERYTHING TO US! Perhaps it would be healthier to say that ‘we’re worth the burden,’ instead. No mother can deny that having a newborn baby is a burden of love. It’s absolutely exhausting, but we know that despite the burden, no matter how hard it gets, that little baby in our weary arms is absolutely worth the work! (Just like my daughter and all that she went through, there’s nothing that I wouldn’t have given to see her through it. She was worth it!” And as I continued with my fight, I realized that I was too and if we were going to fight to win this battle, we had to have very real conversations about my fight. My family had to be allowed [encouraged even] to admit that they get exhausted without fear of hurting me or offending me. It enabled us as a family to put the blame on my conditions so that it was Chiari that has robbed us, not me. It had robbed all of us, and we weren’t going to play games and put it on anything or anyone else. We were going to fight back as a family. So if anyone has a problem with our name or our acronym, I’m perfectly okay with letting that be THEIR PROBLEM.

If you have a family member struggling with EDS/Chiari/Comorbids, whatever, you’re going to have to strengthen one another. WE HAVE TO STOP DENYING THE MAGNITUDE OF THE FIGHT, acknowledge it (every part of it), and fight back as a family, where every single person in that family KNOWS (beyond a shadow of a doubt) that they’re WORTHY! That even if we as a family must go to the ends of the earth together, it’s worth it, because each of us is WORTH THE FIGHT! And if someone forgets, write it on their arm to remind them!

This article is dedicated to my daughter, MyKaella, who taught me what it means to live knowing that we’re WTF! I’m so proud of the woman you’ve become and the woman that you helped me to become!

Published: 28 March 2019

Written by Cheryl Isanogle

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Categories: Health & Fitness Resources, Recipes

INGREDIENTS:

Blueberry Balsamic Vinaigrette:

- ½ cup fresh blueberries
- ¼ cup aged balsamic vinegar
- 2 teaspoons honey
- ¼ cup avocado oil or light olive oil
- ¼ tsp sea salt
- ¼ tsp ground black pepper
- ¼ teaspoon onion powder
- ½ tablespoon whole grain Dijon mustard

Walnut-Crusted Chicken:

- 2 cups walnuts
- ½ tsp onion powder
- ½ tsp garlic powder
- ½ tsp sea salt
- ½ tsp ground black pepper
- 2 eggs, whisked with 1 T water
- 2 large boneless, skinless chicken breasts
- 2 TBSP olive, coconut or avocado oil

Salad:

- 2 cups kale, washed, ribs removed, and roughly chopped
- 4 cups 50/50 Spinach/Spring Mix salad greens
- 8 radishes, thinly sliced
- ½ cucumber, sliced into half moons
- ¼ red onion, thinly sliced
- ½ cup fresh blueberries
- 1 medium carrot, shaved with a vegetable peeler or grated with a cheese grater
- 1 medium avocado, sliced

DIRECTIONS:

In a blender, combine all dressing ingredients. Blend on high speed about 20 seconds, or until dressing is smooth and emulsified. Taste dressing and add more honey if it is too tart. The sweetness may vary depending upon the ripeness of your blueberries and the quality of your balsamic vinegar. Set aside at room temperature.

Place walnuts in a food processor and pulse until walnuts are ground, resembling course breadcrumbs. Avoid the temptation to leave the food processor on high, as this can result in a nut butter. Mix ground walnuts, onion and garlic powders, salt and pepper in a medium bowl or pie plate. In a separate medium bowl or pie plate, whisk together eggs and water.

Cut each chicken breast in half by thickness by laying the breast on a cutting board and pressing down on it with the palm of one hand. Using a chef’s knife in your other hand, hold the blade parallel to the cutting board and slice through the thickness of the breast, using a sawing motion. Repeat with the other chicken breast. You should now have four fairly thin chicken cutlets. Pat them dry with a paper towel.

Heat your chosen cooking oil on medium heat in a large, nonstick skillet. If your skillet is not large enough to accommodate all four cutlets, use half the oil at a time and work in two batches. Dip each cutlet in the egg wash, then the walnut mixture, pressing the walnuts onto the chicken. Place chicken in heated pan and cook approximately 3-4 minutes on each side, until walnut coating is deep golden brown and chicken is cooked through. Remove to a CLEAN cutting board to rest. Allow to rest and cool for five minutes, then cut into ½-inch slices.

While chicken is resting, assemble your salad, by combining all the ingredients except avocado in a large bowl. Divide the salad into four bowls and top each bowl with a sliced walnut-crusted chicken cutlet and ¼ of the sliced avocado. Drizzle prepared vinaigrette over chicken and salad and serve immediately. Leftover dressing can be stored in the refrigerator, but will be best if you let it return to room temperature before serving.

Published: 23 October 2018

Written by Michelle Cole

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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>

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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Published: 28 May 2018

Written by Mary Cremer

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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>.

Published: 26 January 2018

Written by Director of Health & Fitness Resources

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Categories: CB Departments, Health & Fitness Resources

After years of having our symptoms dismissed, having our pleas for help and understanding seemingly fall on deaf ears by our doctors (and many times our friends and family as well), it can be a relief to finally have a name for what has gone so horribly wrong with us. The relief is short-lived however, as we begin to realize the full scope of all that is really wrong with us. Although surgery can be extremely successful for some, many of us are left with some degree of symptoms or complications to deal with. For those of us who also have a connective tissue disorder, such as Ehlers-Danlos Syndrome (EDS), the issues with our tissues can seem endless. The thought of “getting healthier” can seem like a daunting task. We do not have control over every aspect of our health, or every aspect of our fight, but we are not powerless! We do have control over some lifestyle choices, that can help improve our day-to-day lives.

MAINTAIN A POSITIVE ATTITUDE:
The single most important item within our control is our attitude! We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive attitude. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.

CHOOSING FOODS WITH YOU IN MIND:
With connective tissue disorders, and the myriad of effects they can have on our bodies, eating healthfully can feel like walking through a minefield. Mast cell issues can cause sudden or intermittent allergic reactions to a wide variety of foods. Dysautonomia can require us to consume large amounts of salt (and still may end in nausea and vomiting). We are more prone to gastroparesis, gastric dumping, Irritable Bowel Syndrome (IBS), and other gastrointestinal problems that limit our food choices. Despite all these challenges, most of us can make food choices with optimum health in mind. Many EDS experts recommend eating whole, nutritionally dense foods, and taking supplements to help mitigate the vitamin and mineral deficiencies many of us are prone to, due to malabsorption. If inflammation is an issue, we can avoid dairy, sugars, refined flour, fried foods, and replace them with foods that are known to reduce inflammation, such as: salmon, blueberries, beets, broccoli, spinach, and foods cooked in turmeric, ginger, garlic, and olive oil. Most importantly, we can educate ourselves on our various conditions and what the experts on those conditions recommend, discuss this information with our own doctors and develop an individualized plan for ourselves, and apply this knowledge to our everyday life. Knowledge is key with conditions such as ours! While eating well is not going to shrink our cerebellar tonsils or cause our bodies to make collagen differently, it can help improve energy levels, and reduce pain and other symptoms.

MOVING IS ESSENTIAL TO MOBILITY:
Despite the pain and the fear, we can choose to move every day and strengthen our bodies as much as possible. Deconditioning is a real issue for many of us who have had such debilitating pain and other symptoms, that even after a successful decompression surgery, we may find ourselves unable to function normally again. And while we may never be 100% again, we usually can gradually improve our strength and endurance through a good physical therapy and exercise program. Experts agree that strong muscles help reduce many of subluxations and soft tissue injuries that are common to us. It isn’t always easy to find the motivation to get up and take a walk or to do those exercises your physical therapist assigns, but we must remind ourselves that we are worth the effort, and that even the very slightest bit of progress, is still progress. As the adage goes, “A journey of a thousand miles begins with one step.”

We encourage you to fight for better medical care, for more research, for doctors and loved ones to listen to you. But with that also comes a responsibility to do everything you can to take the best care of yourself possible. To follow your doctor’s recommendations (once you find a good one), to eat well, and to stay as active as you possibly can. But you don’t have to go this alone! If no other positive thing comes out of being diagnosed with Chiari or any of its comorbidities, we do promise you this; the Chiari community is full of amazing, inspiring, loving, encouraging people who will stand in your corner and cheer you on through all your challenges, even if no one else will. And we here at Chiari Bridges will be there along the way with tips and advice on living your best life possible with Chiari and all its ugly friends. Remember, pain is inevitable, but suffering is optional!

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Published: 19 January 2018

Written by Director of Mental Health Resources

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Categories: Mental Health Resources

Depression is more than simply “feeling sad.” It is a deep dark tunnel of despair that seems to have no end. It manifests as a cohort of symptoms, seeking to wreak havoc in every facet of your life. The activities that you once found enjoyable seem to take more energy than it promises to be worth. Your energy levels plummet, often resembling that of a slug crawling through peanut butter. Insomnia, restlessness, changes in appetite, and memory loss are often present. Mood swings that change without permission, rational and irrational guilt, endless chronic pain, and suppressed emotions (“I’m fine, really.”), create an enormous obstacle that seems impossible to overcome. The chronic illness, loss of identity, and indifferent medical community make treatment challenging. The depression Chiarians feel can be overwhelming and isolating.

Chronic pain is something Chiarians face on a daily basis. Disabling pain that reduces your quality of life can make once simple tasks difficult to accomplish. Things like taking a shower or cooking become incredibly challenging. Fatigue can set in quickly, that even when we have plans that we’re excited about, just getting ready for them can be enough to put us back in bed. All of this can give us an altered self-perception of feeling useless, which enhances the depression. Chronic pain is both a physical and psychological condition, thus making treatment complex and difficult. Pain can cause depression and depression causes pain; it’s a vicious cycle.^[1]

Beyond the pain aspect, damage to one’s cerebellum is known to have cognitive consequences as well, and that includes emotions. While much of the research is based on the cognitive effects of decompression surgery,^[^2] many Chiarians have reported a noticeable cognitive decline years before surgery. In some cases, they complained of cognitive issues even before their Chiari diagnosis. One study pinpoints a “reciprocal connection between the cerebellum and hypothalamus” that govern “intellect, emotion, autonomic function, and sensorimotor control.” Another article on Secondary ADHD (Attention Deficit and Hyperactivity Disorder) speaks of the cerebellum and its known connection to ADHD, and even though the cerebellum is almost exclusively thought of in terms of its motor control, “it is the most consistently implicated and also the most robustly abnormal structure in the pathophysiology of ADHD.”^[3] The article attributes it to the fact that, the cerebellum is “second in size to only the cerebral cortex, contains more neurons than the rest of the brain combined, and is massively connected to the cerebral cortex.” Among Chiarians, we have long-known that we all suffer from memory issues (both long and short term), anomic aphasia (repeated trouble remembering words), and various other cognitive struggles, and it’s important to remember that all of our thoughts, including those that are depressive in nature, stem from our brains (even our cerebellum).

Adjusting to the new normal is always a challenge, not only for us, but the ones we love as well. The loss of our former selves and our careers is very hard. Maybe you were a full-time parent or provider, caring for your family and you find yourself the one being cared for by loved ones. You find yourself depending on family and friends to do for you things that you once did for yourself, making you feel like a burden on those you love most. You may experience a sense of helplessness when trying to get friends and family to understand what you are going through. There will be friends and family who cannot or will not try to understand. They will think you are lazy or seeking attention. We must mourn the loss of old selves, careers, sometimes family and friends, as others must mourn their loss of your former self, and learn to embrace the new you in your new normal.

The struggle to have the medical community work with us, rather than against us, feels like an impossible feat. The worst thing that happens to us when dealing with doctors is being told that everything is in our head (which at least isn’t 100% wrong, but not in the way they mean it). In their ignorance, our doctors often dismiss our symptoms as mere depression, being a hypochondriac, or a drug seeker. They tell you that losing weight will alleviate your problems. That may be true for some things, but no amount of weight loss is going to put your brain back into your skull and it’s hard to focus on exercise when every single step makes you feel like your neck is literally breaking. Instead of admitting that they have limited knowledge on Chiari, they attempt to make you feel stupid, inferior, and a bother to them. It’s so frustrating when those who are have taken an oath to help you and are charging you for that help, are not willing to learn about your condition. You become the educator, teaching those who are interested and willing to learn. You become your own best advocate!

There is hope. There is a light in the tunnel. The depression may not go away completely, but it can be managed. There are things you can do to help alleviate the symptoms. Joining a support group (in person or online) to connect to those who experience the same things you do can be a tremendous source of support. Encourage family and friends to join support groups to get a better understanding of your condition and to join groups for caregivers so that they have somewhere they can connect with people that are going through the same fears and frustrations that they’re going through (because the Chiari isn’t just affecting you). Get to know others that are fighting your fight, learn from them, stand with them, and maybe even volunteer to help others new in their fight!

There will be times when your body rails against you, making it difficult to get out of the house. But try to stay as active as you can with something! Try to continue with your favorite hobbies: reading, writing, crocheting and coloring books. Keep your memory working by utilizing crossword puzzles, Sudoku, puzzles (the box kind) and card games like Solitaire. The most important thing is keep talking with people: call a friend or make new ones if you need to. Find a therapist that you like. Share about what you’re going through and show concern for what others are going through. You are worth the fight!

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References:

¹ “Depression and Chronic Pain.” Self Help Center, <www.selfhelpcenter.org/pdf-publications/Depression%20and%20Chronic%20Pain.pdf>.

² Allen, Philip A., et al. “Task-Specific and General Cognitive Effects in Chiari Malformation Type I.” PLoS ONE, Public Library of Science, 15 Apr. 2014, <www.ncbi.nlm.nih.gov/pmc/articles/PMC3988081/>.

³ Eme, Robert, and Erin Sheffer. “The Cerebellum and Attention Deficit Hyperactivity Disorder A Case Study of a Cerebellar Chiari 1 Malformation.” The Practitioner Scholar: Journal of Counseling and Professional Psychology, 2012, <www.thepractitionerscholar.com/article/view/10503/7232>.

Published: 19 January 2018

Written by Director of Patient Advocacy Resources

1 Comment

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.

Published: 1 January 2018

Written by CBAdmin

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Categories: General Information, Mental Health Resources