How to Help an Arachnoiditis Survivor

A New Way to Live With Spinal Arachnoiditis
From the Arachnoiditis In Real Life Digital Photo Series

How to Help an Arachnoiditis Survivor: Physical Rehabilitation & Recovery After Spinal Adhesive Arachnoiditis excerpt from Art For Arachnoiditis:Still Standing; Sometimes ~ ©Sheila L. Kalkbrenner      Please note that I am not a doctor or qualified medical practitioner. I am an experienced patient sharing what has worked for me in the hopes that other survivors may find something useful here.

First this IMPORTANT INFORMATION ABOUT PREVENTION

  1.       Arachnoiditis is a spinal cord injury caused by the neurotoxins in spinal injections and invasive spinal procedures. All patients should be monitored for symptoms of the inflammatory phase of arachnoiditis following these procedures. Certain early interventions and protocols can potentially minimize the permanent nerve injury and debilitating consequences which may occur after this phase.
  2.       Prior to giving consent for these procedures, obtain the name & dose of any medications that will be used during the procedure. Confirm that the drug is FDA approved for this purpose. If it is not, get a statement in writing which explains clearly the risks of this off-label use and why the physician plans to use it for this purpose. Check the FDA listing of adverse outcomes for the proposed medication prior to giving your consent.

Because this was NOT done in my case, I lived with undiagnosed chemical meningitis, the inflammatory phase of arachnoiditis, and subsequent spinal adhesive arachnoiditis in the lumbar and thoracic spine for three years before I received informed, accurate, and adequate care. My personal integrity, sanity, and mental stability came into question as the symptoms progressed with no diagnosis. I had no advocate willing to assist me in the adjustment to this permanent disability during that time. Many of those who have come before me suffered alone even longer before receiving assistance. Unlike the “usual” spinal cord injury, because I did not have an official diagnosis during this terrible time, there were very limited services and/or resources for recovery or adjustment available to me.

Family Circle Sketch
Day 12 Art Journal Entry

SUPPORT: FAMILY & FRIENDS CAN… Arachnoiditis Survivors often suffer lengthy periods of unexplained pain and neurological complications. Family members and friends are often at a loss about how to help. This sense of hopelessness and confusion can often cause them to distance themselves from the relationship. Because the medical community rarely (until very recently) even acknowledges the existence of arachnoiditis, this distance effectively leaves the survivor abandoned to cope with the consequences of this medical injury alone.

  1.       The best advice I can give for those who truly care is, don’t give up. If you need to have your own space to cope, take it. But, remember to come back. No matter the illness, “The core element of healing is connection. With connection, to self, to the World, to others and to the spirit, this creates a starting point for positive change & growth.” ~Amanda Scott   Yours can be the voice that keeps this injured/ill person connected to life.
  2.       Find out what your survivor can do comfortably and support them in doing it. Because Survivors often have delayed flares triggered by certain physical movement and activities, know that s/he may be unable to perform that exact same task tomorrow. Keep your expectations flexible to minimize disappointment, anger, and frustration for yourself and your survivor. {Examples: Your unemployable survivor may be able to participate in your company dinner party to be supportive of your career obligations. S/he may NOT be able to attend the company brunch the next morning due to flares triggered by the previous evening. Your survivor may be able to stop to get groceries today. Tomorrow s/he may be struggling just to drive home.}
  3.       Alternate tasks. Break daily chores down into more manageable components. Work with your Survivor to troubleshoot new methods of doing certain tasks to make them easier to accomplish. {Example: Sometimes I could get groceries but, had to go straight to bed when I got to the house. Eventually, my children understood the need to take turns bringing in the groceries and cooking dinner… It became evident that the air conditioning and cold temps in the refrigerated portion of the store were a trigger for multiple debilitating symptoms for me. I began to avoid this section. When possible, somebody would join me to get groceries and handle items in that section of the store. Or, eventually, I was able to have somebody pick up a few of these items for me while they were getting groceries for their own home. This, a seemingly small favor, made a big difference in what I was able to accomplish the rest of the day.}
  4.       Be respectfully observant. If you spend a lot of time with your Survivor, watch for subtle signs and symptoms of decline that develop before an ultimate body slam. {Example: prior to the crash & burn that would happen in the grocery store, I would start doing laps through the store, repeating aisles, looking at shelves but never really comprehending what was on them, picking up nothing, getting anxious and apprehensive, clenching my arms tightly across my chest or clinging to the shopping cart, feeling off-balance…I looked like an animal chasing its tail. My oldest daughter first noticed this pattern in my house when I would go from room to room like I was on a mission, but, ultimately I wasn’t doing anything. Shortly after this a crippling spinal headache would ensue and I would lose coordination between the left and right sides of my body. Now, we know that if this phenomenon happens, the neurons are not firing properly and I need to get horizontal asap.}
  5.       You can set up a schedule to assist with transportation issues. Arachnoiditis symptoms often impair the ability to drive. Have a list and a plan for each destination. This support is especially needed for medical appointments, but not exclusive to them. So, work together to set up a “car-pool” -type schedule so that the burden of this support does not fall on one person. Remember that your Survivor may actually be able to do it alone sometimes. Be flexible if the schedule changes or alters and you are not needed at the scheduled time. To minimize resentments be sure to set boundaries for your availability so that your Survivor knows when/how to reschedule in a manner that works for you.
  6.       Like you, your Survivor is struggling to come to terms with these changes and adjustments. Establish a safe and respectful method of communication which allows you to voice concerns that arise about his/her well-being and sharing of research and information that you might discover along the way. Try not to take it personally if your Survivor does not immediately follow your advice or guidance. Ultimately, s/he must do what works best today.
Art Journals Help with Adaptability
Art Journal Page
Adapting to Arachnoiditis

EMPOWERMENT THROUGH BEHAVIOR MODIFICATION Arachnoiditis often renders the survivor dependent on others for daily support and assistance. Still there are some things that Survivors can do to maintain some independence and personal power over the events of the day. Due to a lack of guidance and companionship during this difficult journey, I kept a journal of my days to document my fears, anger, pain, and hope. Inadvertently, it became a record of pain levels, triggers, and symptom progression. Over time I began to identify things that I needed to do differently.

(Please note,each case presents specific to the individual patient and the nerves affected. These details are specific to my own experience. What worked for me, may not work for the next patient.)

  1.    I learned to get horizontal every three hours even if I didn’t feel incapacitated at that specific moment. Arachnoiditis scarring has impaired the CSF rotation in my spine. This means that the fluid gets trapped in my lumbar spine and I do not have enough fluid around my brain. The resulting symptoms are similar to a spinal fluid leak. I keep a waterproof picnic blanket with me any time I am away from home. I put it on a bench, on the ground, push two chairs together, or even on an office floor in order to assure that I do not miss this important horizontal time. (It took some time to get used to doing this. It still feels conspicuous and I sometimes hesitate but, ultimately I know it is what I need to do.)
  2.    My neurosurgeon, who was unable to treat this condition, informed me that Gatorade helps to restore the fluids necessary to restore CSF levels. Although, at first I was somewhat offended in my defensive frame of mind, it eventually became obvious (through trial and error) that there was indeed some truth in what he had said. I don’t really like Gatorade, but, I do now keep it in stock for use on exceptionally “active” days. Because of the artificial nature of Gatorade, I am also looking into natural options. Some forms of coconut water that are now on the market indicate that they contain electrolytes with restorative properties. I am doing some trial replacements with those.
  3.    I learned not to waste my vertical time on waiting, hovering, or other unnecessary task just because it was the “social norm” to do so.
  4.    I plan ahead as often as possible. I try to be prepared for pain flares and unexpected needs. I confirm a place to lie down. I lay down for at least 15 minutes before I leave the house. For overnight trips, I bring my back brace and neck brace. (The back brace provides support during vertical activity.The neck brace is used at home 3 times a day to help with symptoms that have developed due to loss of the natural curvature of the cervical spine due to severe muscle spasms. When I am away from home, remembering to do this can often reduce the flares that might occur from doing extra/out-of-the-ordinary activities.) Extreme sensitivity to drops in temperature has taught me to bring a sweater with me in the summer months to compensate for air conditioning. In the winter, I bring at least one layer more of clothing than the people around me are wearing and a blanket. For me, cold temps cause tremors, muscle spasms, and pain in head, neck and all four extremities…often before I even know that the temperature has changed. People who know me understand that they should not be offended if I leave the building. It usually means that the sweater was NOT enough or I have reached my vertical limit.
  5.       Ask for help. I still struggle with this one. I have managed my own house, done my own maintenance, repairs, and lawn care as a single parent for over 20 years. I still try to use chores to stay active and remain mindful (a few more tips on this topic: Mindfulness and Chores) but, I am still learning to modify those chores. Big progress for me, I have accepted that I need help for any task involving a ladder. Because I cannot afford a car due to financial hardship of Arachnoiditis, I have to ask for transportation to most destinations. Scheduling this in advance works better than last minute trips/requests. I give gas money to the driver. For routine assistance remember to be prepared. Although it is necessary to feel comfortable telling your friends & family that you are in too much pain or too sick to follow through, stick to the schedule/plan as much as possible so that you are not inconveniencing your support network. Random and inconsistent changes to the schedule will make it difficult for them to provide the support you need.
  6.       Take a step back. I am still conditioning myself to stop trying to manage or control situations that do not pertain directly to my own personal health.
  7.       Minimize physically demanding tasks that show a pattern of triggering “flares” later.
  8.       Keep moving. Change position often. I try not to sit, stand, or lay down in one position for more than 30 minutes at a time. Because of arachnoiditis in the thoracic spine, when I wake up in the morning it is especially difficult to move my arms. I have learned to stretch slowly and carefully to get things moving again.
  9.       Know what makes you feel good. Self-care is essential to survival. Discover and record the things (big & small) that help you through difficult days or situations. What gives you strength? What shows you beauty? What makes you laugh? Where do you find grace in your day? Allow yourself to grieve. There are so many losses associated with permanent disability. The losses can be exponentially greater when the origin of your pain & disability is denied causing validation and supportive resources to be withheld. Laugh... often and loudly even if nobody is there to hear you.

VOCATIONAL REHABILITATION Many Arachnoiditis Survivors are deemed unemployable. I had to stop working because I was in too much full-body pain, had extreme sensitivity to sound, nausea, vomiting, parasthesia, dizziness, and loss of coordination & balance to continue teaching & caring for children. Later when these symptoms were better controlled, I could not re-enter the workforce because employers could not reasonably accommodate the continued need to lay down every three hours to compensate for Obstruction of CSF Rotation. With the assistance of Vocational Rehabilitation Services, I changed my career path.

  1.    Focus on the positive. I identified independent skills & abilities that could be done the “traditional” way. Then, I identified skills & abilities that could still be done with modifications. I opened my mind to the concept of developing NEW skills & abilities which fit into the boundaries of Arachnoiditis.
  2.    Some activities can improve outcomes. Art has always been my coping mechanism. Discouraged by the challenges and obstacles when I first tried to paint with these neurological complications, I developed a new project using an entirely different media & method to restore and redefine some of my fine motor skills. The Still Standing, paper sculpture & photography project is now available for display in pain management and rehabilitation clinics..
  3.    Willingness to learn new things was crucial to adaptability. When it became clear that I was unemployable, I attended the Entrepreneurial Assistance Program offered by the business division of the local community action agency. Although I did have to attend a percentage of these evening classes, they provided me with the option to do portions of the lessons from home. In the program, I created a business plan for a self-sustaining live/work art studio designed with reasonable accommodations for spinal adhesive arachnoiditis. Later, this business plan earned a small business start-up grant from Vocational Rehabilitation Services at ACCESS-VR.
  4.    Willingness to relocate was crucial to adjustment. Unemployable & no longer able to maintain or finance my three-story house, and losing benefits of pain management treatment during the ride home from the medical facility; I made the difficult decision to buy a much smaller, single-story home located closer to the Rehabilitation Services Facility. In choosing the property and location I made sure that it met the requirements appropriate to my studio business plan.
  5.    Ask for help. Although I was eligible for a VA home loan because of my prior military service, the lender did not view social security disability as a viable source of income. I had to obtain a regular bank loan to cover the cost of the house. I had to ask for a personal loan from a friend to cover the cost of the down payment. In spite of having a credit score well over 700 at that time, I also had to have a co-signer to purchase the property. Many years of working hard to maintain my finances responsibly made this insulting and extremely difficult to accept but, it was necessary to my forward movement.              

    Using the Ostrich Cot
    Working
  6.    Modify your surroundings. I learned that certain objects made life easier. The Ostrich Cot, a tanning/beach chaise, from the Ostrich Products Company allowed me to draw, research, write, and create other art work while lying on my stomach. I use an inversion table almost every day to maintain an appropriate CSF level. I keep a timer to remind me when I need to lay down. I maintain my studio websites from my laptop while I am in my bed. I applied for and received a weatherization grant to make my new house/studio warm enough to allow me to tolerate the winter in Upstate New York. In my studio there are four work stations which permit me to work from multiple positions to minimize neurological symptoms throughout the day. Visitors are welcome by appointment so that my vertical time can be used efficiently. Heating pads and telephones are strategically placed around the house/workspace. After several unexpected falls while working alone, I conceded to enroll in a medic alert program with a direct line to local emergency services.

COPING WITH THIS ADVERSE OUTCOME The journey of the Arachnoiditis Survivor undoubtedly includes an emotional rollercoaster ride for the survivor as well as friends and family members.  Services that were helpful for me included:

  1.       Grief counseling for the losses. Job, friends, co-workers, significant other, lifetime achievements & accomplishments that were now null and void, financial & personal independence were tremendous simultaneous losses. But, for me, the most devastating loss was the loss of my credibility. The people around me stopped believing what I was saying. I could see the pity and loss of respect for me in their faces. Without the acknowledgement and validation of a medical diagnosis over such a long period of time, they began to believe the allegations of supposed mental illness. In spite of three neuropsychological evaluations which ruled out ALL psychological origins for my symptoms, they were more inclined to believe that than the possibility that my doctors had knowingly injected a neurotoxin into my spine. Admitting that this could happen to me, undermines their own personal need to believe in the integrity of their doctors. Counseling helped me to come to terms with their perspective while reminding me that I was NOT the “deranged imbecile” that they suddenly seemed to perceive me to be.
  2.       Anger Management for the way I sometimes felt about these losses but more about the way I felt about the medical community at the time. In spite of my personal & professional achievements, for many months I was treated as an uneducated, needy, inconvenient, psychotic, hypochondriac, unworthy of the time it took to write my name on the page. This was partially due to the fear of litigation on the part of the responsible parties and lack of interest and/or information on the part of those who could have made a difference. My frustration at the resistance and obstacles the medical community kept putting in front of me as I tried to figure out what happened to me became a daily entity that I faced constantly. This anger did not subside when I found out the cause of my neurological symptoms and that it was a preventable entity that I should have been warned about. I worked through a lot of this anger with the counselor to help minimize how much of it my children had to hear. Eventually, I was able to turn this journey into a positive thing and began earnest efforts to increase awareness and prevention of Arachnoiditis.
  3.       Communication Skills about illness, loss, boundaries, adjustments, and defining my new role in the world around me.
  4.       Online Connection to the existing community of Survivors. The informative support and validation I received from members of Life With Arachnoiditis/Arachnoiditis USA kept the crippling isolation of undiagnosed arachnoiditis at bay.

MISSING PIECES In hindsight there are some additional services that would have helped reduce the grief and hardship of this adverse outcome.

  1.    Parenting as a single parent coping with sudden permanent disability, I could have used some additional support to permit continued involvement in the lives of my teen children. I was unable to attend many of the school events that are an irreplaceable part of this stage of development. My ability to provide advisement on academic & career oriented decisions was limited. Due to financial hardship all of my children had to work in the summer. They were unable to attend the available drivers’ education programs because of this scheduling conflict. Although my son already had his driver’s license and he was getting ready to leave for college the year that I became ill, I was unable to teach my daughters how to drive. My oldest daughter, now 22, is finally able to attend an adult education program similar to driver’s ed in order to work toward this goal.
  2.    Pet Care/Placement assistance would have eased many burdens. This is an area that I think is often ignored or forgotten even with transitional assistance for acknowledged permanent disabilities. The family pets that we had were strays acquired while I was a full-time teacher with more than enough financial and physical means to care for them in a loving and appropriate way. Our Golden Retriever, Lily, smart, well-behaved, and a lovely, gentle dog; was epileptic and required continued medical care to maintain this condition. The seizures were unpredictable and difficult to control. Although she was never mean, she would run into things and had to be prevented from harming herself. They often resulted in loss of bladder and/or bowel control. She had to be bathed and her living space had to be cleaned after each seizure. When it became evident that I was NOT going to get better any time soon, I tried for six months to place her (and our cats) in a loving home with quality care. Having no luck in this endeavor, and no longer physically able to manage my own body, I finally had to have her put to sleep. Our cat, Sophie, a tri-colored, long-haired, Maine Coon Cat, was killed in an attack by the neighbor’s Rottweiler as my daughters were leaving for school one morning. I was experiencing pain, parasthesia and loss of coordination. In spite of my best efforts, I was unable to save her. (Prior incidents with this same neighbor and same dog had been reported to dog control and town authorities. This dog was a rescued dog who was not being housed in an appropriately fenced care facility. I had frequently had to call the owner at work to let her know the dog was out again and tormenting elementary school children on their way to school. As my illness had no conclusive documentation I was not eligible for any support staff or in home aids. The lack of validation from the professional medical community caused friends and family to believe that I was mentally impaired and that I was over reacting when I had previously asked for help with the neighbor’s dog.) Continued problems with this dog (to the point that it would not permit my daughter to enter our yard on the way home from school one night and chased her until she had to jump a barbed-wire fence to get away to call me from a neighbors house) finally resulted in my informing the owner that I would personally shoot this dog if it came on my property again. Although there were no raised voices, and she was very understanding and apologetic over my concerns, the adrenaline released during this confrontation left my neck, arms, and back in spasms. I was sweating and trying not to fall down the entire time I was talking to her.
  3.    TIMELY DIAGNOSIS would have made many beneficial services available to me when I really needed them.
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