All posts by sheilalynnkart

About sheilalynnkart

Creative Wellness Program Facilitator, Empowered Sustain-able Artist of Affordable Art, Spinal Arachnoiditis Survivor, Empowering Fellow Survivors via participation in the arts. Keeping the arts accessible to all members of our rural community. My prints and commissioned projects are sold locally and at Studio Visits are available by appointment. Public and Exclusive Activity for Patrons can be found here:

How to trust your doctor

Seated figure facing away from the viewer. Black & white illustration
How to trust your doctor after a medical injury

Originally published in January 2016, this is a post from the archives of the Art For Arachnoiditis Project .

The resource links included were active at that time and have been updated to the best of my ability. Use what resonates for you. Leave the rest.

How to trust your doctor (a.k.a. “Any Medical Practitioner”) after a medical injury.

January 26, 2016 ~Sheila L. Kalkbrenner  The Art For Arachnoditis Project at SheilaLynnK Art Studio, An experienced patient. NOT a physician. Be Sure to seek Professional Advice from a Trusted Practitioner prior to making any adjustments to your treatment plan.

After nine years of fighting to recover (read as “survive and start over”) from the medical injury (Spinal Adhesive Arachnoiditis in the Lumbar and Thoracic Spine) which occurred during a “Routine” right knee arthroscopy to treat a work-related knee injury (a torn meniscus); I find myself in an alarming state of déjà vu.

 I need to create a new word for that. You know, a situation which looks remarkably like another situation that you survived but still strikes fear in your heart…a Word for THAT.

After two months of dealing with debilitating pain and swelling in my OTHER knee, (with no known recent prior injury or incident) it has come to my attention that I must have a “routine arthroscopy” to correct the torn meniscus they found in there – along with a few other problems.  The onset of symptoms was much different this time and began with posterior knee pain and swelling…symptoms of the torn meniscus started weeks later after trying to walk on it with the posterior knee issues. 

In MY head, nothing about any of this is Routine! Likely, nothing about anything requiring medical care will ever really feel “routine” to me again. But, I did get my Disaster Mind under control so that I could approach the situation in a rational manner.

For most people this would be considered an elective procedure. However, as the current knee symptoms are impairing my ability to cope with the abundant demands of Living With Arachnoiditis, it would not seem that I have much choice but to seek some kind of corrective measures if I am to maintain (and improve) the quality of life I have worked so hard to achieve since THAT permanent medical injury occurred.

So, HOW do I move forward in the face of this playground for my Disaster Mind? (I can’t take credit for that term…I got it from Heatherash Amara.)

  1. Redefine the term “Trust”~ This word has long since ceased to mean that I believe everything the doctor says or have absolute faith in his/her knowledge. Although I do, somehow, still believe that most practitioners really DO have good intentions, I recognize the limitations of their knowledge and the parameters* that restrict them under the current demands of the usually, Insurance-Imposed treatment structures and protocols here. And, unfortunately, there ARE doctors out there who are mostly worried about the bottom line and NOT the patient. Beware of those. No sense in keeping the bad apples around. 9 Signs You Should Fire Your Doctor     
  2. Ask The Questions ~ Any questions you have…big or small…this is your chance to really KNOW and be involved in your own treatment and care.
  3. Expect treatment ABOVE that of the accepted “Average Standard of Care” ~ You deserve it. If WE change OUR expectations…the “average standard” will no longer be accepted. (i.e. Did you know a general practitioner is seldom, if ever, expected to look at your entire imaging study? Often the focus is only on the specific item questioned by your referring physician and the individual slides related to that. On average, the rest of the slides are ignored…even if they might reveal an associated injury or condition of More concern. Nobody knows because Nobody looked. On the other side of that, your treating general practitioner relies mostly on the radiology report (not the actual imaging study or slides) to determine your treatment plan. Some do look at the slides but ONLY zoom in on the items identified by the radiologist. On average, it inherently becomes a circle of validation instead of being a thorough evaluation.) It IS okay to ask your doctor to personally review the images in question …if he/she admits they do not know how to READ those images, ask them to consult with or be referred to somebody who IS.  
  4. Sacrifice Convenience for Quality ~ I know going into it that asking questions may get me Fired as a patient. We are a society of people enslaved to convenience to save time, money, effort and simply be more efficient. But, this can lead to the opposite outcome. Going with the flow isn’t always the best way to go…especially when it comes to Medical Care. One obvious example: I have become increasingly aware of the way you can sit in the waiting room for hours but, there is seldom enough time included in the appointment to actually read the forms we are supposed to sign in the exam room before we even talk to the doctor. Most patients simply accept this and sign anyway. Yikes!  Rarely is there Ever any indication that anyone actually READ the form(s) we hurriedly completed.  Another more specific example:  The first referral for treatment is close to home but after you ask The Questions, the Specialist gets nervous and wants to send you to a “Special-er Specialist” two hours (or more) away. Know that if your doctor refers you farther away and you do NOT have means to get there, many forms of insurance WILL VERY LIKELY cover medical transport. Oh! And back to the questions. Don’t forget to ask WHY, this specialist is special-er than the one you just saw. What is it that makes him/her More qualified than the one you already have. I don’t say these things lightly. I am well acquainted with the frustration of switching doctors, of WAITING and of Jumping through the Hoops and the weeks and weeks of untreated symptoms while all that admin junk gets figured out…and while trying to actually FIND somebody who IS qualified AND willing to be the Real Deal Doctor. Having just gotten patient-fired this morning; knowing what I do, I still wept a little at the delay, frustration, and complications which will inevitably ensue.
  5. Know the meaning of Informed Consent ~ Being informed means that you know the risks and understand exactly what is happening (i.e. whether your medications, procedures, and/or relevant equipment are being prescribed within FDA guidelines or being used off-label and WHY.) Although it is by no means a comprehensive list of what COULD go wrong; the FDA Adverse Events Reporting System MAY help red flag anything warranting additional attention.
  6. Know your Patients’ Bill of Rights ~ print it out and read it while you are in the waiting room. 
  7. Balance your Panic with Wisdom ~ A holistic approach to Wellness provides me with sort of a system of checks and balances which includes Modern Medical care but does not rely on it exclusively. Although I am attentive to the atmosphere in the physician’s office and the way that I am treated; I recognize that Invasive Procedures Warrant more in-depth attention and concern than an annual check-up. I work to know myself so that I know the difference between “Disaster Mind” and a rational, intuitive alert to a need for BETTER care and/or more information. Unless I am bleeding or on fire, I do NOT make any medical decision under duress. (i.e They call and want me to decide something while the spaghetti is boiling over and the dog just ran out the front door. My appointment was delayed by the other patients asking questions during their appointments and after waiting for hours to see the doctor my bus is going to be here any minute but they want a decision before I leave. You get the idea.) Unless it is an URGENT-TRULY-LIFE-NOW-DEATH-IN-A-MINUTE emergency, you can ALWAYS call them back after you have had time to think about things and process your questions. It’s not like they can fix the problems/pain right this instant anyway. There is time to think, to find out and consider my options BEFORE I decide.
  8. NEVER, EVER SETTLE FOR SUBSTANDARD TREATMENT BECAUSE YOU “DON’T WANT TO INCONVENIENCE ANYONE ELSE.”  ~   I am realistic. I know there are no guarantees in life. Anyone who knows me knows I am NOT a Diva. I understand the humanity of the people providing the care. I am usually a very patient patient.  But, I have learned the hard way to speak up. Being polite is no excuse to permit inadequate or questionable treatment. You may be on the gurney rolling towards the O.R. and realize you have another question…Guess What! YOU can stop everything to get those answers. If necessary YOU can even re-schedule the whole damned thing!  YOU are the decider.
  9. OWN YOUR WELLNESS ~ I have to live with the decisions I make, the procedures I permit (or not), and the outcome of the care I receive. It is MY job to make sure to-the-best-of-my-ability that it is the RIGHT care for me.
  10. TRUST YOURSELF ~ I know that I know my body better than anyone else. If am being told something that doesn’t mesh with that knowledge; I trust that there are answers elsewhere that make more sense or seem much more applicable and I seek them out. I expect my knowledgeable doctor(s) to be willing to explore those options with me.

Life shrinks or expands in proportion to one’s courage.”— Anaïs Nin

So, in the midst of weighing the pros and cons of completely avoiding ANY corrective measures for this knee -because there simply are no guarantees; I am confronting my trust issues head-on, making sure I have explored all options available, griping about the need to do so, and trying to be responsible for my own outcomes. FEAR is a powerful thing. After coming up empty in my search for tips on how to trust that everything will be okay and how to have faith in that after a medical injury I am writing about my discoveries to Re-assure myself and to give Other people Something to Find when they do the Same search.   I hope this list is useful to you.

~Wishing all of you a low pain day. –slk

Other Related References:

HIPAA: Health Insurance Portability and Accountability Act

If your doctors’ office doesn’t know, your local Community Action Agency and/or Department of Social Services should be able to advise you about how to obtain Medical Transport.

~ A note about being “Patient-Fired” …it’s not about a routine referral. It happens when a doctor says, “We don’t have the staff to handle your case.” Or “I am not sure we have the time that is needed to adequately review your history/needs/specialized care.” Or the secretary says, “The Doctor has reviewed your questions and case history and feels Dr. X,Y,Z would be better at assisting you. So, you don’t need to worry about the pre-op schedule we gave you. You’ll get a new one from them.”

For a patient who is Never belligerent, in the midst of pain and other symptoms and stressing over the logistics of just getting there in the first place; these types of statements can Feel like being punished for speaking up and following through on important concerns. The “Whatever-Dude” norm that pervades through our land makes me want to just go along to get along. BUT “Disaster Mind” stomps on His head. Out of the rubble of the battle between Disaster Mind and Whatever Dude walks, “Ain’t-Nothin’-But-A-Thang Girl”. It’s her rational, intuitive, wisdom-ess voice that I need to hear.

It says, “Now you know he/she wasn’t the right person to handle this situation With you and you can find the person who is.”

Sometimes she throws in a random aside like, “Suck it up buttercup. This too shall pass” but, mostly it’s just a compassionate middle-of-the-road perspective that helps me get on with my day….One hour, one minute, one second at a time…depending on how much I can handle all at once on THAT particular day.

Be real with yourself. Being Patient-Fired often means that wasn’t the right path to be on.

The Art of Managing Inflammation




Every case of arachnoiditis is different. What works for me may not work for you. On a very basic level, inflammation is at the root of arachnoiditis symptoms. Life with arachnoiditis is an ongoing evaluation of risks vs. benefits. Because there are so few resources it requires attention to our own bodies and how they respond to certain circumstances. It has been fifteen years since the initial injury that brought arachnoiditis into my life. Over this time, I have paid very close attention to what triggers inflammation for me. As I am not a candidate for invasive procedures and chemical interventions and pharmaceuticals create more problems than benefits, this attentiveness has been the best method for me to have an independently manageable life. 

Arachnoiditis pain and neurological dysfunction made me feel like I was being attacked by gravity and the rest of the external world. Every. Day. This spinal cord injury and its systemic consequences depleted my body and made me vulnerable to environmental things and socio-cultural habits that most people I knew never had to worry about.

I cannot refer you to ONE specific resource as research for my personal needs has been quite extensive via many assorted nutrition and wellness practices, holistic methods, medical guidance, and random keyword-based online searches when I fall down that rabbit hole. The life changes I have made have included a lot of trial and error with cumulative beneficial outcomes that evolved over time. So, I have to warn that attempts to change everything all at once is setting yourself up for disappointment, failure, or added medical complications. Slow changes and adjustments have always worked best for me.

Read it again: Slow changes and adjustments have always worked best for me.

Keeping a list and a journal of changes and outcomes was also an informative daily practice.


After the Cleveland Clinic diagnosed me with consequential CRPS in my left leg, I happened to find a video that talked about controlling the inflammation of CRPS via an anti-inflammatory menu. After approximately six months following that plan with successful outcomes for my leg, I also began to notice that I was able to be vertical for a longer amount of time before the usual onset of low CSF symptoms. To me, this indicated that the inflammation in the subarachnoid space must be subsiding a bit, too. I don’t know if that conclusion is factually, medically, or scientifically true. I just know that in my own body the outcome was a good one.

There are a plethora of online suggestions for anti-inflammatory menus and diets. In my experience, these are personal choices specific to my own body, I had to make the effort to pay attention to how my body reacted to certain foods. It’s a useful starting point but any general menu/diet “plan” can only serve as guidance for a place to begin. In the end, my body was the one with all the answers. As with delayed repercussions of physical exertion, the impact of any given food was not always immediate. Sometimes, I wouldn’t notice any issues until the day after…or it would be a cumulative result of a combination of foods. Keeping in mind that external factors beyond my control could have an impact on pain and inflammation, the journal I kept still helped me to identify certain patterns related to what I consumed. (As the skin is the largest organ and absorbs many things, “consumption” includes products that I put ON my body, too.)

What I feed my mind and spirit also matters. It is important to go gently with these discoveries.

There is no cure for arachnoiditis. Symptom management is key. Though I am not qualified to explain the science behind it or prescribe a management plan for anyone, I can share what I have discovered through my own observations.

Things that trigger inflammation/pain for me:

  • Too much vertical time (Scar tissue blocks the natural rotation/exchange of CSF in the subarachnoid space)
  • Home Cleaning and Hygiene products that contain neurotoxins and other toxic chemicals.
  • Candles and air fresheners that contain neurotoxins and other toxic chemicals.
  • Chemicals released from products and packaging in department stores 
  • Toxic and “Non-toxic” Art Supplies (“Non-toxic” is a relative term)
  • Chemicals and “additives” in medical treatments, pharmaceuticals, and supplements
  • Gluten
  • Sugar
  • Artificial Sweeteners (i.e. aspartame)
  • Polyethelene glycol (in Miralax and other FDA approved products and medications)
  • Polysorbates (FDA approved for use in food and hygiene products)
  • Nightshade vegetables (tomatoes, potatoes, egg plant, etc.) Eventually, I was able to resume having these in small quantities if I was careful NOT to do it in a week when I had been exposed to other triggers. 
  • Foods that feed candida overgrowth

Candida overgrowth causes inflammation. Gastroparesis and/or low digestive motility increase the risk of candida overgrowth. Candida overgrowth became a consequential issue with a variety of symptoms that took me a while to figure out. Eventually, I did a full cycle of candida control menu adjustments to the anti-inflammatory menu I had already been following for over a year. Over time, I have found my own way to keep things in balance to minimize the extreme symptoms that were happening when candida first became part of my vocabulary. Subsequently, I noticed that there was also a reduction in the frequency and intensity of the neurological symptoms of arachnoiditis.

There are many online resources and books to explain a Candida Control Menu/diet….and what it actually does. Of the ones I read, it seemed the basic information was quite similar and the general guidelines were direct and easy to follow…usually.

I still have arachnoiditis symptoms every day. I still have to weigh the risks and benefits of daily choices for things that most people never even think about. BUT, for me, these choices are the least-invasive, least-toxic, most-successful management option.

The Risks

Normal life is inundated with chemicals to the point that it is rare to even notice the impact they are having on our bodies… until we start getting away from them. I didn’t realize the extremes of this until after about a year or so of making my own hair care products, I walked into a bathroom that was full of freshly showered Pantene hair products. The need to vomit was almost immediate. This, and similar items, were products I had once used daily.

In our society stepping away from “normal” environmental hazards, social behaviors, and eating habits can be an extremely isolating choice.

The impulse and effort to explain myself to others became exhausting until I learned how empowering a simple, “No, Thank You.” can be.

In Western culture, sugar and gluten are a huge part of our consumption. Time management and attention to details are factors in finding items without these ingredients.

Many “gluten-free” products contain added sugar. Going without gluten means their is a need to make sure that calorie and nutrient intake normally provided by healthy gluten is replaced with other nutritious foods.

Quitting sugar caused withdrawals. For me, sugar was a physical and emotional addiction that clearly exacerbated my other symptoms. Removing it from my daily life was, and still is, a big challenge. It isn’t just about the treats and sweets. Excluding raw foods, sugar is added into almost every food product we “normally” buy. The best bet was to avoid all processed foods as much as possible.

The Candida Control Menu was a long and difficult adjustment. In the beginning there were withdrawal symptoms, depression, and precautions against the herxheimer reaction that can occur with the candida die off. Self-compassion is important. Knowing that I was giving my body safe and valuable nutrients didn’t change the fact that it can be difficult to follow all of the “rules” all of the time. Though I have returned to many of the unsweetened foods I would normally consume, I do find that a need to revisit this menu happens a few times a year so that I can maintain a healthy balance and keep inflammation at a more manageable level.

For me, inflammation anywhere in my body has an impact on the other parts. It’s all connected. Some Old and New Bits from My Research


The Art for Arachnoiditis Project and SheilaLynnK Art Studio are in no way affiliated with any of the links/resources shared on this page.

Culinary Creations~Food 4 Daily Wellness


RECOMMENDED FOR YOUR WELLNESS ~  Be sure there is actual FOOD in your food. These days this is an art that requires creativity that may not be something you see every day.  

My personal goal is: “If it didn’t exist as a food source 100 years ago, don’t eat it.”

  • Nourish your body with organic non-GMO Real Food with no added sugars, artificial colors, or preservatives. Avoid processed foods.
  • Always Read the Label. When choosing meal ingredients and prepared meals/Frozen dinners look for labels that actually say: “organic” “non GMO” “no preservatives” “no artificial flavors, colors, or preservatives”
  • Avoid Sugars. Other words for sugar include: sugar or “table sugar”, cane sugar, cane syrup, dextrose, fructose, glucose, sucrose, corn syrup, high fructose corn syrup, agave nectar, liquid sugar, lactose, molasses, beet sugar, galactose, maltose,
  • Choose less inflammatory, healthier grains. Organic “Ancient Grains” are generally less inflammatory than modern genetically modified wheat products high in processed or genetically altered gluten. Items labelled, “Gluten Free” or “Low Fat” may have many added sugars. Always check the label.
  • Choose natural corn. Non GMO corn and Non GMO corn products are generally less inflammatory than the genetically modified corn and corn-based products common in many processed foods.
  • Take care of your gut flora. Inflammation in the gut is known to cause inflammation in the rest of the body. Keep a healthy balance of naturally occurring good bacteria by avoiding starches, gluten, sugars, and other foods that are high on the glycemic index. Be sure to consult your doctor about the need for pro-biotics, pre-biotics, etc. prior to taking anti-biotics. Foods made from animals treated with antibiotics are also known to have an impact on your good bacteria.

I am not a physician.

Always consult your trusted practitioner prior to making changes to your treatment plan.

 Foods I eat most often include: Organic cage-free eggs, Meat that has never been treated with hormones or antibiotics, quinoa, heirloom rice, amaranth grains, gluten free oat bran, plain sunflower kernels, pecans, plain pumpkin seeds, almonds, almond milk, non-GMO corn tortillas, non-GMO blue corn chips, greek yogurt with active cultures, organic vegetables like: brussels sprouts, bok choy, cabbage, celery, cucumbers, cauliflower, sunchokes/Jerusalem artichokes, lambsquarters, lettuces, peas, rutabaga, spinach, yucca root,  zucchini, and organic fruit low on the glycemic index like: black berries, blue berries, and green apples.

Although I have been having wonderful results at controlling inflammation and the pain it causes by following this plan, because of the neurological damage caused by spinal arachnoiditis; I still have trouble digesting solid food. To be sure I am getting plenty of nutrients, I also use a Raw Vegetable Protein Meal replacement beverage with no sugar. I like the Chocolate Raw Organic Meal Replacement shake made by Garden of Life. It can be mixed with water but, I like it best mixed with unsweetened almond milk. (I am not getting any financial compensation for sharing that info. I am sure there are others out there that are just as good. This is just one that I know I like.)

You may also like this recipe for coconut bread that I make about once a week. I like to warm up the slices and spread it with organic sunflower kernel butter. This is a very moist cake-style bread. For best results store it in the refrigerator after it cools.

Coconut Bread


½ cup coconut flour

½ cup buckwheat flour

½ cup coconut milk (only the creamy part on top)

¼ cup ground chia seeds

¼ unsweetened organic apple sauce

5 organic cage free eggs

2 tbsp coconut oil

½ tsp sea salt

1 tsp aluminum free baking powder


*1-2tbsp more coconut milk or almond milk if added moisture is needed

*sunflower kernals and/or added cinnamon are also yummy in this recipe


Preheat oven to 350 F

Blend together the eggs, apple sauce, coconut oil, and salt

Add the dry ingredients and whisk until you don’t see any lumps

Pour into a loaf pan greased with coconut oil and bake at 350F for about 30 minutes.

The top of the loaf should be firm and a light golden color.

Remove from the oven and allow to cool.

May be served warm or cold plain or topped with sunflower kernel butter or other nut butters.

** If you are not a fan of coconut flour and coconut milk, you may substitute unsweetened plain almond milk and almond meal/almond flour for those ingredients.

Tastes great with brewed chicory mocha beverages.

Creative Wellness Program for Survivors

This detailed video gives in depth information about what is included in the program.

Arachnoiditis Survivors registered at the Art For Arachnoiditis Project have always received this Independent Study Program at no cost. CONTACT the Studio with the message, “I am an arachnoiditis survivor in ( your state/province, country), please send me the Creative Wellness Independent Study Program” to sign up now and add my location to the Map of Arachnoiditis Survivors registered at the project.
[Module FIVE Includes the 2018 I Stand For Love Calendar on orders placed BEFORE July 1, 2018. 2019 Calendar Options TBA.]

The five module Creative Wellness Independent Study Program is now available for FREE.

Creative Wellness Independent Study Program Description

Since you will receive all of the content at once; you have the option to schedule it into your calendar as you choose. For best results; I recommend completing these activities in consecutive order and allowing yourself at least two to three weeks to fully explore the topics introduced in each module. For planning purposes, Scheduling suggestions are included.


In the First Module (suggested schedule: one-two weeks)

We will work to establish your safe space. This space will Shelter you as you do this important work. Transformation is an on-going process. There is no “end-game”… You have the power to designate a safe place to allow your own transformation to occur. Topics, Re-usuable Worksheets and activities include:

Fortress for a Naked Thing Recap and Reference from the Art For Arachnoiditis Project
Tools to Build Your Own Shelter
If You Build it You Can Go There

In the Second Module (suggested schedule: one-two weeks)

We find out more about the Power of Joy, finding it, naming it, and knowing it. Re-usuable Worksheets and activities include:

Joy Is Powerful with printable worksheet
Grace Happens ~ Your Assignment Should You Choose To Accept It
Quick DIY art journal instructions

In the Third Module (suggested schedule: two-three weeks)

We explore individual Adaptability. Here you will find tools that will help you Assess and Improvise to Overcome your obstacles to Wellness. Topics, Re-usuable Worksheets and activities include:

The Adapt-Around Art Activity and Metamorphosis Mandala
Adaptability Assessment and Time Management Tool
Adapting for YOUR body Guidelines
Your Assignment Should You Choose to Accept It ~Cuts Like a Knife (48 Hour Challenge also pertains to Module Five)

In the Fourth Module (suggested schedule: three weeks)

We go deep into finding out what is stopping you from being sovereign over the shape of your life. You will have the opportunity to work through tasks and activities that will help you to establish your Autonomy. Topics, Re-usuable Worksheets and activities include:

Sovereignty Over the Shape of Your Life
Un-masking the Naked Truth~Mask-making Art Activity with printable templates
Your Vision of Autonomy
Let’s Talk About Control
Shape-Shifters Creative Focus Art Activity with link to demo video

In the Fifth Module (suggested schedule: three-four weeks)

We ask and answer the important question, “How do you nourish your Wellness?” Quality input, communication, and connections are equally important Sustenance for Independent Wellness. Topics, Re-usuable Worksheets and activities include:

Cuts Like a Knife ~ Revisiting the 48 Hour Challenge
Quality Input ~ Creating the Right Tools to Feed YOUR Wellness
FIVE Steps to Create the Tools:
ONE Shed the Crap~Fertilize Your Transformation w/printable activity sheet and Cut-out template
TWO Replacing the Crock of Crap~Lessons in Love-based choices and Vessels for Wellness for Body, Mind, and Spirit~printable worksheet and Extension Activity, Ingredients List for Anti-inflammatory menu
THREE Connecting the Dots ~ Cultivating an Appropriate Habitat
FOUR Your “Right” Cluster ~ How to establish your Cluster. cluster Cards for Creative Guidance Includes Message Guide and Cluster Cards printable templates to color and cut, instructions for Cluster Cards Mobile (extension art activity), Creating your Own Cluster
FIVE Clustered Communication ~Expectations and Connections


You will receive ALL FIVE modules of the content with links to references and resources as well as, printable worksheets and activities that are yours to keep. This is NOT an automated delivery system. Please allow 2-5 business days for manual e-delivery of your pdf. 

The Art For Arachnoiditis Project is FREE to all registered Arachnoiditis Survivors.

If you know a survivor and would like to support this project, Use the donation button at the top right corner to support the continued maintenance of this valued online resource for Arachnoiditis Survivors or support via check made payable to The New York Foundation for the Arts, MEMO: The Art For Arachnoiditis Project; MAILED TO: SheilaLynnK Art Studio 345 South Main Street Wellsville, NY 14895. Contributions of $2500 or more must be accompanied by a Contribution Letter. Your contribution is tax-deductible to the extent allowable by law. 

If you would like to make a Tax-deductible contribution to support OTHER Charitable Art Projects and Events at SheilaLynnK Art Studio you can find out more about that HERE.


Theme: Unified for WellnessFBcoverPage2.2.18 ***Survivors, please remember, you are not expected to fund this project. It is here to benefit you. You do not need to send any additional funds beyond the cost of your registration fee for your art entry. You are NOT required to submit an entry in order to participate in the project.
There are many other FREE methods to participate.***  


  • Survivors can still sign up for theAlbum of the Survivors HERE & Map of the Survivors HERE .The Map of the Spinal Arachnoiditis Survivors Registered at The Art For Arachnoiditis Project is Live At Google Maps HERE. 
  • Hope Cards for Arachnoiditis Survivors from anyone who would like to encourage an arachnoiditis Survivor on a path to Independent Sustainable Wellness are being accepted Now. There is no fee to enter this category. Find out more about that HERE.
  • You must be registered with the project via the attached registration form to be eligible to receive a FREE copy of the Creative Wellness Program Independent Study pdf. No fee is required if this is the only reason you have registered. 


Deadline April 9, 2018 ($5 Entry Fee for each entry)




Keep scrolling for MORE FREE Activities for Healing with Art


Coping Tools for Survivors  & Survivors’ Stories 







Art For Arachnoiditis is An Art, Adaptability and Empowerment Project about Living With Spinal Arachnoiditis. It is a Charitable Project of SheilaLynnK Art Studio fiscally sponsored by the New York Foundation for the Arts, A 501(C)(3) non-profit organization. 
Among the services provided, the Project Includes this Website for Survivors which served 93 countries in 2015 (WordPress Report).


At the risk of over-simplifying… Arachnoiditis is a spinal cord injury caused by the neurotoxins in spinal injections and invasive spinal procedures.READ  MORE ABOUT ARACHNOIDITIS



Don’t Give Up

We received some wonderful art by survivors as we squeaked through Year 3 with a less-than-ideal fiscal outlook, and personal family illness and death. Although we didn’t reach the Year 3 fiscal goals, we are moving into Year 4 with some hopeful adjustments And a Modified Method to present a FREE Independent Study Creative Wellness Program to Survivors Registered at the Project. [FIND OUT MORE]


As always, the current Income/Expense report is available to the public. Though our intentions are always to provide as many services as possible to support Arachnoiditis Survivors in their Creative Wellness Efforts; we are limited by our fiscal abilities and physical resources.

Your purchases in The Art For Arachnoiditis Shop benefit this project.


FUND OUR CREATIVE WELLNESS GOALS~ It’s tax deductible AT NYFA [The New York Foundation For the Arts] or via check made payable to The New York Foundation for the Arts, MEMO: The Art For Arachnoiditis Project; MAILED TO: SheilaLynnK Art Studio 345 South Main Street Wellsville, NY 14895. Contributions of $2500 or more must be accompanied by a Contribution Letter.


As of this post, The Artist Stipend for this project remains unpaid. Additional details available in The Art For Arachnoiditis Project CUMULATIVE FISCAL SUMMARY   

New to the project? Visit THE PROJECT PAGE to see what this is all about.


To minimize the cost to the Arachnoditis Survivors for shipping, insurance, and other usual exhibition expenses; There IS a $5 registration fee for the Survivors’ Art Exhibit to assist with the cost of  making prints and processing digital entries for display. Other than that one annual exhibit fee; All Spinal Arachnoditis Survivors registered receive Project Benefits for FREE since the project began.

Pending Adequate Funding, the YEAR 4 Survivors Art Exhibit will be FREE and open to the public after June 1, 2018. Tentative location: Alfred, NY. Actual Date, time, location TBA.


Find Survivor Registration Info on the HomePage

Fiction For Survivors~An International Short Story Contest

fictionforsurvivorspromoFICTION FOR SURVIVORS ~ AN INTERNATIONAL SHORT STORY WRITING CONTEST & Fundraiser  from SheilaLynnK Art Studio Wellsville, NY




  3. SUBMIT IT WITH YOUR PREVIOUSLY UNPUBLISHED SHORT STORY ABOUT THE IMAGE with YOUR ENTRY FEE ($15) BY JANUARY 25, 2017.Entries submitted after January 25, 2017 cannot be considered or refunded. In your own words; tell us a tale about what you see unfolding in the illustration.

After the first $110 (to cover cost of monetary awards)

10% OF ALL PROCEEDS AND FUNDS RAISED DURING THE CONTEST WILL BE DONATED DIRECTLY TO ALLEGANY COUNTY CANCER SERVICES a not for profit 501(c)(3) Serving residents of Allegany County NY with a cancer diagnosis since March 2007.



AWARDS By Category~ Entries in each category will be reviewed by a panel of local writers and artists.

ADULT ~ Ages 18 and Up                    TEEN ~ Ages 14 to 17            YOUTH ~ Ages 11-13

ONE winner from each category will receive: $30 and online publication of your completed coloring page and story in the Fiction For Survivors series here at, an international website for Spinal Arachnoiditis Survivors

THE PATRON’S CHOICE AWARD~ Selected by Patron vote (SheilaLynnK Art Studio Patrons subscribing at $3 and up will have an opportunity to vote for their favorite entry. Voting TBA between Feb 15-28th, 2017.) The Author of the Selected Entry will receive: $20 and online publication of your completed coloring page and story in the Fiction For Survivors series at Start your subscription for this option and other Patron Only Rewards HEREOLYMPUS DIGITAL CAMERA

ALL PARTICIPANTS WILL RECEIVE the printable 15 page Wellness Meditation Coloring Pages pdf from SheilaLynnK Art Studio delivered via email. Watch a video preview and Find out more about them here.


THE TOP TEN ENTRIES IN EACH CATEGORY will receive online publication of your story in the Fiction For Survivors series here at


WINNERS TO BE ANNOUNCED and Published in the April 2017 Edition of the SheilaLynnK Art Studio QUARTERLY NEWSLETTER (Sign Up for that HERE), in the Fiction For Survivors series at, and during events at SWAN Days Allegany County, NY                            March 19th -21st, 2017.

CONSENT TO USE YOUR STORY Submission of your story provides SheilaLynnK Art Studio with license to include your work in its entirety and/or as excerpts, with author acknowledgements, in printed or digital formats in the public domain, during free public exhibitions, and in promotional publications from SheilaLynnK Art Studio. Your story will never be sold to third parties. Authors maintain ownership of all original work. Submission of your story excludes SheilaLynnK Art Studio from any liability or consequences associated or pertaining to use in the public domain. Submission of your story via the online entry form serves as your acknowledgement and understanding that you will receive no additional financial or other compensation for the use of your written work as described in these contest guidelines.




Call For Photos for YEAR 3


Arachnoiditis Survivors, Do YOU have a soul place?

During YEAR 3 of the Art For Arachnoiditis Project you are invited to tell us about it and submit a photo of your Soul Place with this much easier NEW ENTRY FORM.

Due to complications and errors with the previous entry form and its processing system; the entry deadline has been extended. Entries will be accepted until January 31, 2017, for use in the online gallery at, future project promotional publications, and live exhibits that are FREE to the public. There is no fee for this entry.

Shortly after you submit your entry, you will receive a complimentary Wellness Meditation Coloring Page from SheilaLynnK Art Studio and an opt in message with an offer to add you to the mailing list for the Art For Arachnoiditis Project quarterly newsletter. Your decision to receive the newsletter (or not) in no way influences the status of your entry.

Upon approval, your photo may be included in YEAR 3 of the Art For Arachnoiditis Project at

Accepting Entries in this category Sep 25, 2016 – January 31, 2017.

This is a FREE entry.

WATCH Video from the YEAR 2 (2015-2016) Survivors’ Art Exhibit HERE

Find out more about the YEAR 1 (2014-2015) Survivors’ Art Exhibit HERE

YEAR 3 Registration Form

UPDATE April 12, 2017

YEAR 3~the 2016-2017 cycle of The Art For Arachnoiditis Project CALL FOR ENTRIES HAS CLOSED 


SURVIVORS’ ART EXHIBIT YEAR 3 THEME: “Gravity Sucks, Hope Floats”



  • Survivors can still sign up for theAlbum of the Survivor HERE & Map of the Survivors HERE .The Map of the Spinal Arachnoiditis Survivors Registered at The Art For Arachnoiditis Project is Live At Google Maps HERE. 
  • Soul Place Photo Art Entries by Arachnoiditis Survivors are being accepted from Sep 25th to Nov 1st 2016. There is no fee to enter this category. Find out more about that HERE.
  • Hope Cards for Arachnoiditis Survivors from anyone who would like to encourage an arachnoiditis Survivor on a path to Independent Sustainable Wellness are being accepted from Oct 1st to Nov 10th 2016. There is no fee to enter this category. Find out more about that HERE.

All other entries must be submitted with the 2016-2017 Registration Form and $5 Registration Fee. Entries will be accepted from November 1, 2016 – April 9, 2017. 


Visual Arts: (Submit a 300dpi digital copy of your work. Do not ship the original piece to the studio) Non-fiction Video, Painting, Drawing/Illustration, Book Arts & Collage, Sculpture, Jewelry, Animation, Wood-work/Carving, and other artisanal works.

Music/Spoken Word/Theatre & Performance: Your original Digitally Recorded Performance in Video or Audio MP4 or MP3 Format. Provide consent for release from ALL participants for group projects.

Written Word: Poetry, Creative Non-Fiction, Short Story Fiction

Art By Survivors will be Displayed in our Online Art Gallery, videos, and in project publications. Pending adequate funding; your art will also be displayed Live and Open to the Public at the Year 3 Survivors’ Art Exhibit during Arachnoiditis Awareness Month, July 2017. Admission is FREE.



Arachnoiditis Support Groups On Facebook

Closed Group
Arachnoiditis Group: This group’s purpose is to be able to interact with each other on a timely basis and to allow members to exchange views, bring support to one another, a fertile reality based on solidarity, sharing, love, and respect for each other. Medical and sound information(evidence based ) are brought forward in an objective way. Other pathologies relating to the Central Nervous System are also discussed in this group such as Syringomyelia, Ms, Fibromyalgia, Tarlov Cysts, Arachnoiditis cysts, Epidural fibrosis, or any others considered as being of importance to the primary diagnosis. It is a CLOSED GROUP, members are able to express themselves comfortably without fear of retribution. RESPECT AND COMPASSION ARE AT THE FOREFRONT OF THIS GROUP. WE ARE SUPPORTIVE AND UNDERSTANDING. You will receive a message from an adminfollowing your request to join. Please respond asap. thank you The pain in each of us recognizes the pain in you. Welcome to our group. Le but de ce groupe est de pouvoir échanger et de nous soutenir l’un et l’autre. Nous avons beaucoup de compassion, de l’amour et nous savons écouté. Nous sommes tous en grande douleurs, certains plus que d’autres, provenant de pathologies comme la sclérose en plaque, la fibromyalgie, les kystes de Tarloc, l’arachnoïdite, la syringomyelie, la fibrose etc. Ce group est fermé donc vous pouvez vous exprimer librement. Il y a beaucoup de respect ce qui est un but premier. Vous recevrez un message d’un administrateur suivant votre requête de joindre, s.v.p., répondez aussitôt que possible. la douleur qui réside en nous, répond à votre douleur.


Closed Group
Were you severely damaged by epidurals, epidural steroid injections, spinal nerve blocks, myelograms, surgeries, or other invasive procedures in your spine? A group for those of us suffering with Arachnoiditis, and those struggling for diagnosis, to come together for support. A place to discuss our daily struggles, successes, and just life in general! #Arachnoiditis #failedbacksurgerysyndrome #epidurals #failedbacksyndrome #intractablepain #epiduralsteroidinjections #chronicpain #meningitis #adhesions #chemicalmeningitis ———————————————————————— Members we updated our rules. We don’t have many. We want to keep this group a safe, private, neutral ground for all. Thanks. ***Post or comments relating to the below may be deleted by admin. *** 1. Please do not block admin. Doing so will have you removed from the group. 2. We have members from around the world who have varying beliefs and religious backgrounds. We asked that refrain from posting religious or political matters. Request for prayer or a discussion of how certain religion or faith has helped you is permitted as long as the post is neutral. 3. No soliciting, proselytizing, or fundraising. Please refrain from posting links to fund raising sites. 4. Please be respectful, kind, and sensitive to one another. Remember text does not portray tone of voice. Fight the cause, not each other. 5. Please message admin if you have a question or concern. Admin are Dawn Gonzalez, Ember Fin, Sarah Elizabeth Hirschle, Rebecca Stivers Medina, Tatjana Lomsdalen, Breanda Faye Taylor, Toni Richmond Werner, Judith Kay Bradley
1,360 members


Closed Group
When you request to join this group, you will receive a private message from one of our admins. Please respond to the message so we can get you added to the group. It may go to your “other PM (Private message) box” depending on your settings, which you can only access on your computer. It will NOT show your “other” PM on your phone.. Welcome to a very warm and supportive group of fellow sufferers. A place where you can learn, support others, and feel loved. The main thing is we support each other and will not tolerate is a bunch of drama, so if that is what you are here to create, be prepared to be removed from the group. I or any of the administrators will not tolerate a bunch of drama. The members of this group are not trained professionals and there are not any doctors here that I am aware of who can diagnose or give any medical advice of any kind. We are here to support each other and to learn and share as we continue this journey of Arachnoiditis. I hope you enjoy!!
737 members
Closed Group
This group was created to help promote awareness about arachnoiditis and chronic pain. Chronic pain is an epidemic that actually affects more people than diabetes, heart disease, and cancer combined. Yet it also has the least acknowledgment, understanding, and acceptance. Let’s all change that.


Closed Group
You are cordially invitited to join us for an exciting, education weeked that is for the patient and provider! The conference will be held in Helena, Montana on July 9, 2016- July 10 2016. Saturday 9:00am-5:00pm Sunday 9:00am-12:00pm Breakfast begins at 8:00am Followed by the Conference at 9:00am; Lunch on saturday will be 12:00-2:00 Room rates will be a set fee of $129.00 for all attendees. If you make your reservation early you may get a lower rate. To make room reservations please contact Radisson Colonial Helena Hotel at 406-443-2100 Toll Free 1-800-333-3333 Tickets for this event are $75.00, this includes your breakfast on Saturday and Sunday and Lunch on Sunday as well as snack items and beverages throughout both days. To purchase tickets please go to: Airport is Helena, MT Regional Airport (HLN) We welcome you to message us your medical practitioners information so we can send them an invitation to come learn or any medical practitioner you believe might benefit from this conference as the whole point of this is for other medical practitioners to learn so we can continue to grow the treatment of Dr. Tennants and receive proper medical care where we live. Even if you do not have a primary care practitioner, start searching your area for non-hospital affiliated practitioners, send us their information and we will send an invite. The purpose of this conference is to unite practitioners so they know how to identify and treat intractable patients while protecting themselves. We need the patients involved in helping us find these clinics and the doctors, nurse practitioners, nurses, radiologists and pharmacists whom we can invite! Our only hope is to spread awareness and teach other medical practitioners how to treat us as Dr. Tennant is only one man. Agenda includes: History and Physical, Labratory Testing, MRI interpretation, Pain relief minimizing opioids, spinal cord exercises, spinal fluid flow measures, diet and supplements, neuroinflammation prevention and treatment, use of neurogenesis hormones, electromagnetic therapies, flare control and treatments and Auto-immunities. Please contact Kate Lamport 406.461.9956 for any specific details needed. Tysa Ostrander, Heather Carlsness and Marlisa Griffith are on the committee and we will keep this page updated as we are finalizing details. Our email:
261 members
Closed Group
WHEN YOU REQUEST TO JOIN OUR GROUP,YOU WILL RECEIVE A PRIVATE MESSAGE THAT WILL GO INTO YOUR “OTHER” MESSAGES BOX,ON YOUR FACEBOOK PAGE.THE ADMINISTRATORS OF THIS GROUP WILL RESPOND VERY QUICKLY TO YOUR REQUEST. PLEASE READ “ABOUT US & DISCLAIMER” IN THE FILES SECTION! For more information on Arachnoiditis, please visit the website: Respect for other group members beliefs. Non-judgemental NO “Spell Police” 🙂 Impartial information, Guidance/ advice and support Respect Laughter and fun Support and care Self-help
473 members


Closed Group
Hello and welcome to the Arachnoiditis Media Support Group. I was approached by Phillipa Mckee who has Arachnoiditis who would like me to bring awareness to this very subject. I would like to hear your side of this condition. What caused it? How do you cope? How has it affected your life? Have you found any ways that improves it? I run a radio show I do not have it personally myself but want to help you all bring all the groups together to promote you all and also bring awareness and maybe let others know who may have it and do not realize. This group is for EVERYONE. There will be no bullying etc. You are in enough pain. We have many other groups that we can connect you with also. If you can suggest people who could come onto the show and speak about any part of this then please do get in touch either by direct message or email Thank you x Sue
43 members
Closed Group
This group is for the purpose of raising awareness through a challenge we are still working on the details. More info to come. So far we have created the spider smiley for the hidden disorders group. We are continuing to work on a theme for the challenge and other events.
40 members
Closed Group
arachnoiditis caregivers suport is a compassionate place where care givers for persons suffering from arachnoiditis can express themselves in a supportive enviorment. As care givers , we also suffer from this horrific disability. we need to vent, share, and recieve compassionate support from others who truley understand what we go through. This Group is Only for Caregivers, if you have Arachnoiditis please ask to join Arachnoiditis Everyday, or Arachnoiditis on FaceBook.
77 members
Closed Group
23 members
Closed Group
I set up this group because my husband has arachnoiditis. He hurt his back in 2007 and had 3 hurniated disks. He had the injections done and something went wrong and now he has this for the rest of his life. We have found that most reg doctors don’t know about this condition. This is a life changing condition. I have read so much on this condition that I think I know more than the average doctor.
309 members
Closed Group
This Group Does Not have monitoring generally by any Admin, must act like an Adult and Respect.. Due unto Others~ This group is dedicated to organizing and establishing a Foundation for the purpose of 1) exposing the cause and prevention of Arachnoiditis to the general public and patients, 2) acquiring funding and donations for research to relieve the enormous pain and suffering that victims of this dreaded fate must endure. This effort will also include the search for physicians and health care providers that have the passion and dedication to search for a cure to end the suffering of many victims, and 3) finding partnerships – including potential media connections – that will promote our cause. *********************************************** PLEASE NOTE- ANYBODY WHO WISHES TO JOIN AVA, PLEASE KEEP YOUR MESSENGER TURNED ON SO WE MAY CONFIRM YOUR INTEREST IN JOINING OUR FIGHT. THANK YOU!! *********************************************** PRIVACY NOTICE: Warning – any person and/or institution and/or Agent and/or Agency of any governmental structure including but not limited to the United States Federal Government also using or monitoring/using this website or any of its associated websites, you do NOT have my permission to utilize any of my profile information nor any of the content contained herein including, but not limited to my photos, and/or the comments made about my photos or any other “picture” art posted on my profile. You are hereby notified that you are strictly prohibited from disclosing, copying, distributing, disseminating, or taking any other action against me with regard to this profile and the contents herein. The foregoing prohibitions also apply to your employee , agent , student or any personnel under your direction or control. The contents of this profile are private and legally privileged and confidential information, and the violation of my personal privacy is punishable by law. UCC 1-103 1-308 ALL RIGHTS RESERVED WITHOUT PREJUDICE
99 members


Closed Group
Planning an Arach get together or convention, possibly during the next FDA ESI Hearing this fall in DC
40 members
Public Group
3 members
Warren Howard is in this group
Public Group
This group is for those who currently have this disease or if you live with or know someone suffering with Arachnoiditis. My name is Celeste Turner, and I was diagnosed with this little-known disease May 2009. I wanted a place where other known sufferers could email, chat and maybe trade stories. There is such little known concerning this diease.
93 members


Closed Group
Bienvenue dans ce groupe de discussion désormais privé, créé et géré par l’AFMKT-France (Association Française de la maladie des kystes de Tarlov). Ce groupe dont l’objectif est de permettre à toute personne le désirant de pouvoir échanger sur le thème de la Maladie de Tarlov / Mega cul de sac / Kystes arachnoïdiens /Kystes Méningés et DVP) est modéré et administrer par 7 de ses membres. Ses Créateur Carrein Alain & Alvés Carolle qui ont fusionnez les deux groupes. Administrateurs : du groupe Carrein Lalain & Serra Patrice & Lixon Françoise & Alvés Carolle & Mayoral Véronique En demandant à rejoindre ce groupe vous vous engagez à respecter lors de vos échanges chacune des règles qui suivent sous peine d’exclusion : 1.Eviter le langage SMS 2. Rester courtois et faire preuve de respect les uns envers les autres 3. Ne pas utiliser d’insultes 4. Respecter la sensibilité des personnes les plus fragiles en ne postant aucune photos de lésions directement ici. 5. Ne pas citer de noms de médecins autres que ceux dont nous connaissont dans la mesure où ces autres médecins ne nous ont donné aucun accord pour que leurs noms ne circulent sur Internet. Utilisez dans ce cas les MP (messages privés) pour communiquer leurs coordonnées aux malades qui les réclament. 6. Ne pas se servir de ce groupe pour tenter d’arnaquer les malades. 7. Respecter et ne pas porter atteinte au travail de l’AFMKT-France et de tous ses membres bénévoles. 8. Dans le but de protéger ses membres, toute publicité est interdite sur ce groupe, qu’elle se fasse directement sur le mur ou via message privé. 9. Accepter sans discussion les décisions des modérateurs du groupe Ce groupe est désormais PRIVE. Cela signifie que seules les personnes inscrites sur ce groupe peuvent donc voir et lire ce que nous écrivons. Merci de votre compréhension, c’est dans notre intérêt à toutes et tous !.
670 members


Closed Group
The Arachnoiditis Awareness Challenge is a media campaign to spread awareness to the general public about Arachnoiditis, its definition, causes and symptoms, treatments, and the search for a cure. Its goal is to make Arachnoiditis so well known that medical professionals can no longer ignore those affected by it, and the general public is educated to the fact that anyone can be subject to this horrible condition. The campaign will consist of several components, yet to be decided on, that will be broadcast over electronic media, including Facebook, Twitter, Instagram, and YouTube, as well as more conventional media outlets.
13 members
Tammera K Heiberger and 1 other friend are in this group
Closed Group
To all who are victims of an arachnoid cyst, and supporters. A place to vent, talk about our problems, and just get to know each other and get support.
1,700 members
Public Group
A silent epidemic and bringing support, awareness and treatments to this part of state.
17 members


Closed Group
A place to share business ideas and to support one another in our home businesses. For those with Chiari, Arachnoid Cyst, Arachnoiditis, EDS-, MS, POTS, IH, Fibromyalgia, scoliosis – any sister conditions.
106 members
Closed Group
7 members
Dawn Gonzalez is in this group


Closed Group
This group was created for positive help for people who suffer from Chronic Pain. Please feel free to invite others that you know that might be suffering. But please be aware that this is a positive group only. Thanks and stay strong! ♥
123 members
James Combs is in this group


Closed Group
2 members
Closed Group
80 members
Claudine Goze-Weber is in this group
Closed Group
2 members


Closed Group
This is a DATING group designed for people with Arachnoiditis or MS , or any other Diseases, We all want to be loved no matter what is wrong with us , but when you have a life changing disease no one wants to be with you but worry no more , I opened this group because I have Arachnoiditis, and im single but when you find a girl or guy you really like and all is going well but you tell them you have a disease they run a mile well now you can find a loved one or a friend on here cos we are all in the same boat . the only rules I have are you HAVE to have a illness and you MUST respect others if you have any problems message me and I will sort them out confidentially unless you want me to post something for you THIS IS A USA/UK SITE ONLY sorry PLEASE STATE WHERE YOU ARE FROM WHEN CHATING TO OTHERS
3 members


Public Group
2 members
Closed Group
A place for people with Arachnoidits who want to seek God for help and healing, and to fellowship with other believers and encourage one another. Let’s share good information in here which will be helpful for others. Let’s pray for one another in Jesus Name. Amen.
5 members


Public Group
6 members
Closed Group
We are raising awareness for Arachnoid Cysts, regardless of country, border, origin etc. With a banded effort, we may finally get some recognition for this disorder. We have recently set this group to closed to help respect the privacy of our members.
110 members


Closed Group
15 members
Closed Group
Do you or someone you love have Arachnoiditis? You are not alone in this fight to live a quality life with this illness. Please share your stories, your medical experiences, and your life, with others that are in the same boat.
3 members
Public Group
3 members
Public Group
28 members
Closed Group
2 members
Closed Group
Tired of the waiting for your polish to dry while smelling the chemicals, but still want gorgeous nails? Try Jamberry Nail Wraps and discover the nail revolution. With an abundance of different styles to choose from, your nails will never be boring again! Current special is Buy 3 Get 1 Free!
103 members
Public Group
Rare Spinal Cord Diseases — cause extreme chronic pain; there is no cure and Arachnoiditis is a progressive disease.
2 members
Public Group
2 members
Closed Group
Welcome to Amy’s Jamberry nail party/fundraiser! I’m so super excited that you have come to have fun while learning about stylish nails on a budget! Jamberry Nails are vinyl nail wraps that come in hundreds of styles. They are heat and pressure activated, so you can put them on yourself at home with a hair dryer or Jamberry Heater. They are nontoxic, non-chipping, non-fading, and much more affordable than salon manicures. Check out Jamberry and join the Nail Revolution! This party will run for 5 days, and you can order any time at and your order will ship to you right away, no need to wait for the party to close! Thank you for joining me!
1 member
Closed Group
This is an issue that needs so much more research on. This group was created to be a place of sharing information and supporting each other through the difficulties of Spinal Arachnoid Cysts, As I have learned there isn’t much information out there on this medical condition. There are a few guidelines we ask members to observe. Just share your story and help bring awareness to Spinal Arachnoid Cysts, If you have Spinal Arachnoid Cysts,, or a relative or a friend that has this condition….You’re welcome here. in fact, Please help spread the information about Spinal Arachnoid Cysts, I have personally suffered for many years with out being properly diagnosed. That has only added to the delay in medical care and added to my pain and suffering. Most group members here, have a serious medical condition so please be understanding.
4 members
Public Group
This page will be Launching an Awareness Challenge To the Public About arachnoiditis. Involvement Awareness Education Action Donation Research. are all the steps to raising awareness. there will be lots of all of these going on. join in a movement and make a difference.
5 members
Public Group
I’m a single mom with three wonderful boys. On April 20th 2012 a large Arachnoid cyst was found in my middle son Jaydens left temporal lobe. Ever since Jayden was an infant I knew he wasn’t like most children. We’ve battled with ADHD, defiance disorder bi-polar and a number of other behavior problems along with head banging scab picking and high tolerance for pain. He was headaches and extrem nasuea. Finding the cyst was almost a God sent things started to make sense. Than it was time to figure out what to do about it. On May 24th 2012 he had a feniatration. Basically it was a way to release pressure from the brain. For a little over a year and a half Jay was pretty good. In December 2013 things started to change back to the way things where before. So now we’re back at the hospital getting at shunt put in. I know Jayden will never be relieved of his cyst but I hope one day doctors and the rest of the world takes cyst serous because they do cause problems on so many levels. Just because it’s not a tumor or cancer it’s still brain damage and should be treated as that.
129 members
Closed Group
Many people suffer from chronic pain. It can be frustrating and sometimes difficult, but you can prevail! This group is for anyone with a chronic illness resulting in a life of pain. Whether you have Fibromyalgia, Arachnoiditis, DDD, RA, OA, Lupus, it doesn’t mater, you are welcome. We will do our best to keep knowledge coming.
2 members
Closed Group
ArachnoidGaming is all about showcasing the many styles of play and how effective they can be. We post videos of any and all games that the members own.
5 members
Closed Group
Many sufferers experience a myriad of symptoms which are ignored by the medical community. This group is for sufferers, their families and friends to tell the world how having an arachnoid cyst effects them. It is also a place were people can come and learn about the condition and help us change the opinions of the medical community. the medical health assosiation needs to stand up and take notice plse join if u suffer or know somebody who suffers with this condition and lets make the world health stand up and take notice,give us the help we need (All too often arachnoid cyst patients get turned away from hospitals, from doctor’s offices. This is only because our symptoms are not written anywhere in a medical textbook under “arachnoid cyst”. This needs to change, we shouldn’t be turned away when we are trying to get help! Some of us here can no longer work because of increased debilitating symptoms. Some of us have become severly disabled and can’t even do the day to day things most people take for granted. These cysts cause symptoms, and depending on their location, the symptoms can be of a wide variety. We are not making them up, they aren’t in our heads, and we need doctors that will listen to us instead of second-guessing us!)
642 members
Closed Group
Our stories before and after surgery of arachnoid cyst removal, no shunts, and it’s not fenstrated it’s completely removed!!
112 members
Public Group
9 members
Closed Group
This is a forum to offer support to people living with arachnoid cysts in the UK. Please use this page to connect and chat to people with similar experiences. Discuss symptoms, care and treatment. A place to make friends and support each other!
70 members
Closed Group
Este grupo no es sustituto de una consulta médica, su propósito es compartir información y brindar apoyo entre los miembros del grupo, cualquier publicación fuera de contexto o con falta de respeto hacia cualquiera de los integrantes será automáticamente eliminada incluido el publicante
3 members
Public Group
We are sick and tired of everyone blaming their abscesses on insect bites especially our beloved 8 legged friends! Face it folks……………….they didn’t do it.
3 members
Closed Group
Living day to day with arachnoiditis is a challenge knowing other people story’s may help us knowing we are not alone
2 members
Closed Group
This is a support group for people from Australia and New Zealand to speak with each other about experiences and outcomes doctors and opinions related to arachnoid cyst and disorders related to them
36 members
Public Group
I’m looking for others who have been diagnosed or have had their children diagnosed with a similar formation in the brain. My son just had one discovered in his temporal lobe and I am looking for more information and support. My son has also been diagnosed with ADHD and within the autistic spectrum when we were informed of this discovery. Any input would be welcomed.
3 members
Public Group
2 members
Public Group
Tempat ngumpul kembali Arachnoid Mania ‘A’ngkatan ‘R’eformasi ‘A’ndalkan ‘C’inta ‘H’ati ‘N’urani ‘O’tak ‘I’man dan ‘D’oa
2 members
Closed Group
Most medical textbooks tend to say arachnoid cysts, are incidental findings, but we beg to differ. Within this support group, you will find many of us share the same symptoms, so how can we all be wrong? This group is for people with arachnoid cysts, and/or their caregivers, to gather and share information to support each other.
9 members
Closed Group
We’re in this together. No matter how bad it can get from hearing voices in your head (you are tapping into other peoples psyche like someone with a bad heart feels a strong pulse) because these are like holes in our souls like a direct connection to the universe whichever god you believe in as long as it makes you a better person and not hate on others for their beliefs. There are so many problems that you have as you age such as trying to get a toddler to mind you or getting an adult to pay attention or having to repeat yourself over and over. Our bodies are cyst minefields and ironically enough we all have something going on with our sinuses and that’s how some people discover their “incidental” (hey look what I found! Neurosurgeon ‘It’s not causing your problems. It’s incidental.’)
5 members
Closed Group
166 members


Closed Group
1 member
Public Group
Pour tous les fans d’Arachnoid!
6 members
Closed Group
Hier können Fotos von Phasmiden, Insekten, Aranoiden, Mantiden geteilt und begutachtet werden. Da diese Fotos meist wenig Liebhaber haben 😉 Es wäre schön wenn zu den Fotos die jeweiligen Bildinformationen (EXIF’s) gepostet werden.
21 members


Closed Group
This Group is for all people who back in the early 1970’s who had Myodil Dye Injections into their Spine
4 members