Kimberly is the next Arachnoiditis Survivor Portrait Project recipient.  Fighting and surviving medical harm and back pain her entire adult life, she shares her story with us to increase awareness and prevention efforts.

“Okay, I wish it was a short story, but it is not.

At age 13, I started on the first day of school with severe hip pain,.  My Mom picked me up and we went to the military clinic. They took about ten X-rays and said nothing was wrong. We went back every day for about a week. Then we gave up and went on to Andrews AFB, where they said it was in my head from moving to a new school. I was told I was fat and needed to exercise a lot.

We then switched to Bethesda Naval Hospital and, still for three more months, multiple X-rays and all types of daily PT including electro acupuncture, biofeedback and self-hypnosis.  They still found nothing wrong.

 At the fifth month my Dad was being dropped off at the top of the street and saw me three blocks away crying, sitting on a protector on the road for cars. He came down to me. I lived a football field away from school, and I was still three blocks from home.  It had taken me two hours to get that far. At that point, Dad knew there could be no fooling around, waiting for answers. He contacted an old neighbor from the last state we lived in,  who was a pathologist.  That neighbor provided a referral to the DuPont Institute for Adolescent Orthopedics. That lit a fire under Bethesda Naval Hospital. They didn’t want to let me out of the military system, so they agreed to put me in the hospital the next week for a thorough checkout. I was now 14 and it had been six months of wrong diagnoses. 

Within three days after multiple tests, they performed a myelogram. The myelogram showed a large ruptured disc at L3-L4. The doctor came in and told me they would put me on the surgery schedule and that she was headed off to a meeting. About a half hour later, I was being rushed to emergency surgery with a central rupture at L4-L5 cutting into the leg nerve clumps. Whatever they hit during the surgery made me jump a foot off the table.  I was then non-stop screaming until they got an IV hooked into me and got pain meds on board. They say the surgery was packed because they were expecting a large tumor. Once they realized it was just discs, they all left. They wouldn’t fuse because they felt I was still growing.

I had a re-herniation 8 months later. In 1981 at age 16, I was fused from L3-L5 with iliac crest.

In 1983, I had a bulging and frank herniation of nucleus pulpous.

In 1991, my back started “clunking” with every step.  I had to have a psoas muscle release to prove that it was my back that was making the noise and not an overly taut psoas muscle. From that point on, I have had to lift my leg into the car as the released psoas muscle was now too long. And the clunking continued.  In November 1991, I had an epidural steroid injection (ESI), which didn’t help at all. Also in this time period I had facet joint injections which also failed to reduce my pain. 

By the time my Dad retired from his first career as an Air Force officer in 1986, I had a 2+ inch thick stack of X-rays.  For every good X-ray, they took 3 bad ones. By the time I was 16, I was warned if I ever had a child I would need genetic testing and 9 months in bed. So, by that time I knew I would not have a child.  In December 1991, I had L2-L3 fusion continuation along with disc removal by the head of Georgetown University Orthopedic Clinic, Sam Wiesel, MD. As he rarely did, he jointly performed the surgery with a renowned neurosurgeon, Dr. Arthur Kobrine, who operated on President Reagan’s Press Secretary, James Brady, after the assassination attempt. When Dr. Kobrine saw me, he said my spinal cord was too small for my body (not the only part I have been told is too small- very weird) and that it was severely tethered.

The surgery they did together kept me in okay condition until 2010. I survived on Darvocet N-100, taking 2-5 daily.  I saw that Darvocet as my lifeline.  Who knew how much more I could and would endure.

Starting in 2006, after being the family’s caretaker for an 84 year-old (my father’s mother), an 85 year-old (my mother’s father), a 94 year-old (my mother’s aunt) and a 96-year old (my mother’s mother), I decided to get as healthy as I could for me.  I knew I would never meet anyone and get married. I knew my next role in life was to be the caretaker of my parents, now in their low 70’s. To get fit, the whole family walked to the beach and back every morning around 10 am.  Then I came home and did Wii EA Active and Wii Dancing for 2 more hours. I did this regimen 7 days a week. No, my back wasn’t a fan, but I was determined to be fit.

I knew from experience that losing weight by exercising increased pain.  My family PCP couldn’t get that. He had the message that the less weight you carry around, the less pain you were in. For me, it was the opposite, since I was losing weight by exercising more.  To counter the increased pain, I increased my pain pills, Darvocet, daily by 1-2 more.  My PCP wanted me to go to PT to see if we could drop the pain meds back by one.
I went to the intake appointment, walking the stairs, climbing slants, doing squats.  At the end of the session, he had me try one exercise he wanted to start me on. I did the rep and left. By the time I reached the car, I told my Dad I was in the most severe pain I had ever been in. I immediately took two Balacet, and Dad drove home. Upon arriving home, 45 min later, I took two 10/325 Percocet and 10mg Valium. Nothing was touching this pain, although I continued taking Percocet and Valium every 3-4 hours. Like an idiot, I went back to this PT the next day, having had no sleep.  I told him that the exercise he had me perform had caused, and was still causing, great pain. Nonetheless, he had me do 25 minutes of exercise. The last exercise was to be sitting on the exercise ball (something I often used as a seat when company came over and we were short on seating), sliding a foot out and then back in.  Now I was in tears both physically and emotionally as I couldn’t balance.  He had to hold me, and I couldn’t budge my legs.  I left again.

The next day I had an emergency appointment with my PCP because I could not budge either leg standing up. I could only walk in an ape position of bent knees, leaning forward. This was now September 16, 2010.  My doctor increased my meds to a Fentanyl patch along with Percocet and Valium. Still little help, but I slept in spurts.  My PCP also said to take a week off then get back to walking.
After the week off, I returned to my normal 2-mile walk.  But, now I could only walk in my gorilla position. Toward the end of the week, my father left me with my mother at a bench and ran home for the wheelchair.  From about 26 October, I walked until I fell back into the wheel chair.  I continued doing this for shorter and shorter distances until mid December.  In mid-December, I went to Orlando to see an orthopedic surgeon my Mom had seen. He performed an X-ray, informing me that I had flat back syndrome.  As a result, he stated that I certainly had pain and always would. He sent me for MRIs the next day. That Friday I saw him again. My back was so bad I got trapped in the lady’s room at his office as the door was too heavy for me to move.  He sent me for a “warm and form” brace for my lower back.  He then arranged for another orthopedic surgeon in his practice, specializing in physiatry, to do an ESI on me that day. This physician had previously done three shots to my Mom in a hospital setting, so that is what I was expecting.  At the time, I knew nothing of the controversy of ESIs. 

When I showed up at his office (on a Friday), I realized it was now a cash factory. I was told to put a gown on. As opposed to Mom, who had twilight in a hospital setting with an anesthesiologist, he just started in. He numbed the skin, and stuck in the needle. I jumped a good six inches up from the table. He yelled at me to be still as he is close to my spine. I was biting the pillow in pain with tears soaking the pillow. When he was done, he left as did the nurse who told me to see myself out. I struggled to crawl to the door, where I budged the door open and cried out for my Dad for help. He dragged me to the car. 

When we arrived home, Dad had to get the wheelchair as I could not walk at all.
By Monday, I was unable to void. Dad sent a fax boldly marked “Urgent” early Monday morning to the Orlando doctors – which went ignored. By late afternoon, Dad put me in the car, and Mom drove us all to the emergency department at Mayo Clinic Hospital in Jacksonville.

Mayo performed an MRI in the ED to rule out cauda equina syndrome. They said the fact I could stand and shuffle my feet bent over confirmed that I didn’t have CES.  They apparently could care less that I could barely shuffle my feet, leaning forward with bent knees. They were sending me home. It wasn’t until Dad kept insisting I could not void that they scanned my bladder. Then they cathed me, and they admitted me. They sent me home on day three, with a Foley cath bag attached to my leg, and with no diagnosis. This was Christmas week, and they appeared anxious to clear out inpatients. 

I followed up at Mayo with neurology and urology clinic appointments.  Dad sent the neurologist a detailed paper explaining my experience in preparation for my appointment. When we got to the appointment, it quickly became clear that this neurologist had decided that my pain and inability to walk or void was in my head – the result of my use of Darvocet for many years, and now of Percocet.  He conducted a brief examination. Then he had me walk down the hall.  By this time, I could walk about ten feet, bent over facing the ground.  He decided he could shock it out of me. He grabbed my hand and took off at a full pace.   Within the first stride, I was tripping onto the floor being dragged five feet by the doctor.

He then said for me to come in for a walking EMG the next day. He never had me walk, he just had me stand.  It seemed that he was more interested in showing off his equipment to a colleague than he was in thoroughly examining me.  When the appointment finished, I told the doctor that I’d see him in a day or two. He did not answer. I left and started crying.  My Dad said I was being foolish when I told him that the neurologist was dumping me. It turned out I was right.   He had arranged for me to see a psychologist that afternoon.  He had given to the psychologist the task of informing me that my entire condition – inability to walk, severe pain, inability to void –  was due to my years of daily Darvocet.

They wanted me to go to Mayo Clinic at Rochester, MN, to an outpatient pain rehab clinic. This concept made absolutely no sense to me.  Upon arrival, they would take away all opioids.  During the day, they would have me in their pain rehab clinic.  But, at night, where my experience informed me that my pain would be at its worst, I would be left to the care of my parents in our hotel room.  I envisioned that I would walk in front of a bus in such a setting.

In Daytona Beach, despite visits to a multitude of doctors, I found no one who was interested in pursuing a diagnosis.  Instead, I found only a multitude of specialists who would tell me “Good news.  I don’t see anything wrong.  Good luck.”  My PCP remained empathetic, and, thankfully, he continued to prescribe sufficient opioids that I could continue to exist, although at night, I was often crying out in pain.

 I only had my Dad for research. Luckily his second career was as an analyst. He spent every day trying to get help from the internet. His research suggested that I might be suffering from a peripheral pain condition, perhaps piriformis syndrome.  He spent $90,000+ to bring me to California to be seen by a neurosurgeon specializing in piriformis syndrome.  He performed a bilateral Piriformis resection at Cedars-Sinai Medical Center. The piriformis muscle was resection, the piriformis nerve was cut, and the piriformis muscle was left to wither in my body. After three months recovery in CA, I left in worse condition than when I arrived. I was back to total wheelchair. At my last check up, my Dad asked this doctor if I might be suffering from adhesive arachnoiditis. The neurosurgeon went into his office to re-examine my MRI.   He then told my Dad that there were signs of unusual clumping of nerves, but that would indeed be a bad [unfavorable] diagnosis.

Near the end of the CA recovery, on the web, my Dad found a spinal specialist at the Steadman Clinic in CO, where major athletes go to for treatment. Dad asked him about the possibility of adhesive arachnoiditis.  This orthopedic surgeon said he could suggest 40 other diagnoses before he would consider adhesive arachnoiditis.   This doctor seemed truly interested.  He exchanged several e-mails with my Dad, inviting us to see him in CO.

I went to see him at the Steadman Clinic in Vail, CO.  After his PA spent about 1.5 hours thoroughly working me up, the doctor then spent about 45 minutes with me. He had me undergo a couple of MRIs using Steadman’s 3T MRI machine.  He then showed us that rather than the normal lumbar lordosis, my spine had developed a lumbar kyphosis, i.e., my lumbar spine had developed wrong curvature as a consequence of my early fusions and flat back syndrome. He proposed a very major surgery, a so-called pedicle subtraction osteotomy. I had to undergo psych counseling and testing to get the surgery.  In this surgery, the surgeon cut out a wedge from L4,  pulled my spine back like a rack of lamb. My spine was then held in this position by curved titanium rods secured by screws into the L2, L3, L5, and S1 vertebrae.  You can view a pedicle subtraction osteotomy surgery on YouTube.

After surgery, I thought he had fixed me.   After the surgery, I was discharged to two weeks therapy at an inpatient rehabilitation hospital in Aurora, CO, where I started walking better.

Upon return to our home in FL, I attempted to continue therapy with a PT.  However, the PT did not appear to follow the doctor’s prescription of going very slowly. The first PT tore both hip labrums by performing an aggressive “piriformis stretch,” despite having been informed that I did not have a functioning piriformis muscle.  Subsequently, a leading hip surgeon has told me that he would not attempt labrum repair surgery because I can barely walk anyways. A second PT said I could be healed with only five exercises, as they heal everyone, which made me think he was crazy.

I returned to CO and the Steadman Clinic for PT. I was there from June until September 2013.  When I left, I walked with a cane, 30 minutes twice a day, and I did 30 min PT twice a day. I was supposed to continue in FL, very slowly, and use the Pilates reformer more and more. Between mid September and November, my condition slid all the way back down, plus my thoracic and cervical pain greatly increased.

In May 2014, I again returned to CO to see my spine surgeon. After a CT scan, he told me that he saw nothing to correct surgically.  He set me up for trials for a spinal cord stimulator. I saw a world-recognized SCS specialist, Dr. Barolat. After viewing the CT scan, he walked in and said that there was no way a SCS would help my lumbar pain, but he thought a peripheral nerve stimulator (PNS) could help my thoracic and lumbar pain. He did the PNS trial.   He had me stop PT with my CO therapist while I underwent the trial. At the end of the trial my pain meds were less, suggesting that the PNS was helping, but only in the thoracic part of the spine. It didn’t touch the pain in the lumbarsacral area where most of my pain was, so he ordered a trial of a lumbar SCS conducted by a local anesthesiologist. That doctor emplaced the lumbar SCS trial on Friday. It was supposed to be a 5-7 day trial. But they so overset the SCS intensity in the recovery room that I had to keep the SCS turned off until Monday afternoon when I could see the SCS tech again.  Then, on Wednesday they removed it – effectively a two day trial.  Once again it seemed like my pain pill use diminished during this trial, but once again I recognize in retrospect that for this SCS trial I had again stopped PT.

In any case, I had a combination SCS/PNS installed by Dr. Barolat on 9 September 2013. After recovery from the surgery and my one-month follow-up appointment, I returned to FL.  The SCS/PNS was not helping my pain.  I met with the SCS manufacturer techs a couple more times while they attempted to better tune it.  Eventually, I had to accept that it wasn’t helping.  In retrospect, the apparent decrease in pain during the trials was due to my stopping PT and not an effect of the SCS/PNS. I permanently turned off the SCS/PNS in early January 2015.

The final weekend of January 2015, I flew to California with my Dad to see a recognized specialist in the care of intractable pain patients, Forest Tennant, MD.  He very quickly concluded I had adhesive arachnoiditis based upon my history and my symptoms. He saw me for about 20 hours over the four day weekend. He put me on hormones as I tested to have lost most key hormones from the adrenal gland working overtime. He normally tries to reduce opioid medication on intractable pain patients, but with how bad my case was, he added liquid morphine sulfate to my OxyContin and 10/325 Percocet regimen. He told me to take as needed to stay ahead of the pain. He also did a few genetic tests. When I was back in FL, he sent a letter to me and to my PCP explaining to be prepared to put me on injectable pain medication as the tests show that I am a rapid metabolizer, up to 200% too fast. Also he told us to avoid anti-depressants, as I am a slow metabolizer, up to 200% slower.  Dr. Tennant provided a written report to my PCP citing my diagnosis as “Intractable, centralized pain secondary to severe arachnoiditis complicated by bowel and bladder dysfunction.”

In March 2015, Dr. J. Antonio Aldrete of the Arachnoiditis Foundation reviewed my history, my symptoms, and my most recent MRIs. He did not see arachnoiditis in my 2008 lumbar MRI, but in both the 2010 and 2011 MRIs, he sees arachnoiditis in several locations.  He provided a detailed written report for my PCP and us, citing adhesive arachnoiditis as the primary diagnosis.

I then again contacted my Steadman clinic ortho surgeon.  I provided to him Dr. Aldrete’s detailed report wherein he reviews my Nov 2011 MRI on a frame by frame basis, finding adhesive arachnoiditis.  I don’t know if the Steadman surgeon went through Dr. Aldrete’s report or the MRI in a similar frame-by-frame basis.  All I know is that he continues to tell me that he does not see arachnoiditis in that MRI.  It’s enough to drive one to drink – if I weren’t on opioids. 

I can’t sit, I have had to reduce my walking from 30 min once a day down to 18 minutes, and still the pain is getting worse. I spend 23+ hours lying down. I can dress myself.  I can only walk with a four-wheeled walker (aka as a rollator) as I have severely damaged balance. I have stomach issues due to narcotic bowel. This is my entire life. There is no quality. Currently, my father is donating all the equipment for all of my activities I used to do, stained glass, sewing and scrap booking and more. I have bought way to much yarn hoping I might be able to knit or crochet. I hate my quality of life.

I am however trying to follow a French doctor’s protocol which lasts three years. She has conducted research into treating radiation-induced breast fibrosis.  She has conducted some peer-reviewed studies showing a significant reduction in breast scar tissue by following a protocol of pentoxifyline in combination with Vitamin E.  In addition, she has authored a case-study of a severely incapacitated, bedridden man due to epidural fibrosis.   Following a couple of years of the pentoxifyline/Vitamin E protocol, his symptoms went away and the fibrosis was shrunk.   Dad met a young woman’s mother online who had adhesive arachnoiditis. The only relief she got was in a pool. After three years on the protocol, she has improved enough to return to college.  The French doctor has written to us.  She is concerned that the protocol may not help me since my original scar tissue goes back many years.  But, my current debilitating condition only goes back to 2010, so I still have some hope for the protocol. I have promised to do the full three years of the protocol, and I am only seven months into it.

Beyond that, I don’t offer any promises.

January 21, 2015 Posted by Melanie Lamb on Facebook K-9 Trainer and author of Standing With The Dog, speaks out.

“What happens when people with my conditions wake up…
We have to get a grip on our body and focus beyond what “focus” means to most.
It always begins in my feet. Burning and needles- intensifying with each passing nanosecond, until you feel as if your feet have been covered in lava. With me, then it begins in my back – until my whole torso is engulfed from the inside out- organs feels as if they should be melting. It then spreads to the rest of my body. Heart pounding so fast it hurts and feels as if my chest is going to explode. Very deep, fast and intense spasms filled with electricity surge through every fiber of my being. Then the sweating and tremors begins. It usually takes about an hour to recover, or it can set the stage for how our whole day will go.
What happens when we are abruptly or unexpectedly woken up – the same thing- only 1000 xs Worse.
We don’t sleep like “normal” people, so we take and cherish what rest we are able to achieve. We don’t reach that REM state of sleep because we are lucky if we reach 3 hours of sleep while sedated before our pain or sensations wake us. I really wish I had the ability to allow some to really FEEL what it’s like… over and over for just few minutes. And a few select others, I wish they could feel it as often as I do. Every single day. Yet, what most of us do IF asked the question, How do you feel? We smile and say “I’m okay” – because deep down, we know that typically when we are asked that, most times the ones asking… really don’t want hear exactly how or what we are feeling because they either simply can’t handle the description they will be given, or, they just really didn’t want to know to begin with, but asked anyway out of habit. Then there are those in our lives that see the pain through our smile or hear it in our words- and refuse to accept that “I’m okay” is the final response and will do anything to make your world a better place… we are NEVER okay. We condition ourselves to get by and make the best of what we have. Our “okay” level of pain lands most people in the ER.
Love my Tish ♡ Today, we both recover .She is never far away.”

Melanie’s Journey with Arachnoiditis and RSD/CRPS

Arachnoiditis Survivor, Kenny Brooks

Is a former firefighter living in West Virginia with his dog Bailey. He is an arachnoiditis survivor. Following multiple back surgeries he was diagnosed with adhesive arachnoiditis ~ empty sac sign and associated complications. Because arachnoiditis can occur throughout the spinal canal, there is a diverse presentation of symptoms from patient to patient. Parallel symptoms of nerve injury are recognizable within the arachnoiditis diagnosis but each case must be assessed individually based on the exact location of injury, the cause of the injury, the extent of inflammation, distribution of pain, and the observed loss of function. As Melanie Lamb also lives with the invisible scars of the empty sac sign presentation of adhesive arachnoiditis, portions of her story resonated with Kenny. However, other variables are at play in his personal outcome.

Kenny is the next volunteer for Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America. He has asked that his dog, Bailey, and Kokepelli ~with other Native American designs~ be included in his portrait.

This is his face.

This is his story.

 “In October 2000, I underwent a multi-level autologous Posterolateral Interbody Lumbar Fusion (PLIF). That’s right,copious amounts of autologous bone was removed from my right iliac crest. This bone was then placed inside of my lumbar spine, in order to fuse these vertebrae together. During the 9 hours spent in the OR, I had 3 units of blood transfused into my body due to blood loss. And, through microscopic visualization of my spinal cord, my neurosurgeon discovered that my Right L5 and S1 had developed Arachnoiditis. My neurosurgeon was assisted during this surgery by an Orthopedic Surgeon. Both surgeons were Board Certified and both surgeons were Associate Professors at George Washington University and Georgetown Medical Schools, located in Washington DC. It was the goal during which consisted of 2 lumbar punctures using a 20 gauge Tuoghy needle. The needle punctured through my thecal dural sac and the doctors injected into my spinal canal a radiopaque dye, which happens to irritate the spinal cord, Cauda equina, and the delicate membranes which surround my spinal cord. Immediately, dynamic X-rays were obtained followed by an enhanced CAT Scan to visualize my spinal cord and cerebrospinal fluid, and all surrounding anatomy including my spinal nerves to see what was right and what was wrong.surgery of decompressing my Left and Right L4, L5, and S1 nerves roots and stabilizing my lower spine from preventing these recurrent disc herniations from happening again. This happened several times previously, and unless my spine was fused together it would continue to happen. Prior to the fusion, I already had undergone 2 major open back operations, which consisted of both laminectomies and discectomies to remove bone and make room for the compressed nerves.

I also had undergone prior to the fusion 2 spinal taps, which consisted of 2 lumbar punctures using 20 gauge Tuoghy needle. The needle punctured through my thecal dural sac and the doctors injected into my spinal canal a radiopaque dye, which happens to irritate the spinal cord, caude equine, and the delicate membranes which surround my spinal cord. Immediately, dynamic x-rays were obtained followed by an enhanced CAT Scan to visualize my spinal cord and cerebrospinal fluid, and all surrounding anatomy including my spinal nerves to see what was right and what was wrong.”

Like Melanie, Kenny was left with the daily, unpredictably hellish torture of muscle, joint, and nerve pain.

“The nerves in the lower segment of my spinal cord are encased with scar fibrosis with granulation tissue wrapped around the nerves. This scar tissue and extensive granulation tissue starves the nerves of essential nutrients deprived from my cerebrospinal fluid. The very life is literally being squeezed out of them in response.

The spinal cords function is to control nerves that serve organs and control muscles, and send information to my

brain back and forth. The scar fibrosis has devoured them; attaching itself to my dural thecal sac which surrounds my spinal cord and now adheres to my spinal cord. This affects the way that my cerebrospinal fluid flows from inside of my spinal cord all the way up to my brain. Empty sac sign means that if you opened up my back, you cannot see that part of my spinal cord. Instead, you see granulation tissue and scar fibrosis. It is stuck together to the nerve fibers in a glue like fashion, from the presence of granulation tissue and scar fibrosis. The nerves adhere to one another, sticking to my dural thecal sac, hindering me from certain movements and causing severe pain with all other movements…This includes bending, stooping, pushing, pulling, reaching, etc.”

The spinal cord no longer moves freely within the spinal canal. Instead of stretching as it should, movement and activity repeatedly rip it painfully free from the scar tissue only to be adhered anew.

 “A quality of life does not apply to me, as once it did. There are many tertiary problems associated with Adehesive Arachnoiditis, such as Radiculopathy, drop foot syndrome, Reflex Sympathetic Dystrophy, atrophy, among other things. Also, anxiety and depression follow me everywhere that I go. I have lost my range of motion, I have atrophy and loss of tone, which causes leg and foot weakness. This has caused problems for me just trying to simply walk. I suffer extreme burning in my legs, ankles, and my feet.”

These nerve injuries can create extreme skin sensitivity which makes the friction of clothing intolerable at times.

 “The nerves affecting my spinal cord are the same nerves that send signals to my bowels and to my bladder for Communications  from my brain to work properly. As a result, I cannot feel my bladder when it is full and when it is empty. The same goes for my bowels.”

 Invasive spinal procedures must be avoided to prevent further inflammation and compression of the nerves.

Arachnoiditis Survivors constantly battle pain to sustain mental focus.

 “I suffer cramping and muscle spasms across my entire lower back, from the bottom of my 12th ribs all the way down to my ass. When the cramping is relentless and severe enough, it is a job to simply just try and breath. With every single breath that I take when those contracted muscles feel like they are about to explode, I have learned to take deep breaths while holding it in long enough but not so long that I am going to pass out. I admit this is the worst pain that I suffer from when just simply trying to breathe.

 I have sleep disrupted every single night that I lay down. Even laying down does not always help relieve pain. I sometimes get on my side in the Decubitus position, with my knees pulled all the way up to my chest in the hope of some relief. The goal is to take pressure off of my muscles in my lower back, but this also will stretch my spinal cord which can no longer be stretched and can cause refractory pain.

Because of the blockage in my spinal canal of the free flow of my cerebrospinal fluid, the fluid going from my spinal cord and up to my brain is impeded. This causes me to suffer headaches that are relentless, and feel worse than any migraine ever will, and there is nothing that I can do except to make these headaches go away. Also, the blockage of fluid is beginning to cause me to suffer from visual disturbances and I have difficulty now seeing things. The process of walking causes stimulation. Stimulation causes muscle spasms, deep inner cramping. Spasms and cramping cause severe relentless pain. It is all that I can do to just walk my dog.”

Every shift in position irritates the nerves creating inflammation and increased nerve compression.

 “I can no longer walk on my heels. My ankles can no longer dorsiflex without assistance from either bracing a wall, a person, or using a cane. I cannot walk any longer on my toes without assistance from a wall, a person, or a cane. My ankles can no longer plantarflex, without assistance. These are indications that my nerves which innervate my ankles and muscles to make them work are becoming slowly paralyzed. It is a vicious painful unrelenting process, both physically and mentally.

Standing, sitting, walking, have all become a working task to me. I must pay close attention, particularly to the amount of time that I spend doing these activities.”

 Arachnoiditis Survivors endure an agonizing loss of mobility and muscle weakness.

“I am facing the possibility of someday being in a wheelchair. I would be using a cane to help me stand, walk, get up and sit down, but it is not possible to use a cane while walking a dog. I have already tried. It is hard to walk without a dog and easier to move around with a cane, and I suffer more relentless painful agony as a result. But, I don’t blame my dog because he is my best friend and it is not his fault.”

 Survivors frequently work to exhaustion to shield caretakers, family, and friends from the extent of the unbearable aspects of this pain. Daily schedules are dictated by pain patterns.

 “ I smile when inside I have not much to be smiling about. I believe my family suffers as much as I do.

 One day is different to the next, and to the day before. I have learned to listen closely to what my body is telling me. Choices really no longer apply to me, they haven’t for years.

I used to run, swim, play soccer, carry people, lift things, drive long far places, run up and down stairs, jump in and out of a car. I used to rescue people, fight fires, treat people in emergencies, care for others in need of immediate care. Those days are long gone, all that’s left are memories. But I can’t even seem to remember what it was like to run anymore, much anything else.

 It’s like I am 38 years old inside the body of a person who is 70 or 80 years old, twice my age. But I have been dealing with Arachnoiditis since 2000, almost 14 years. I have worked since, I have worked several different jobs in several different places. And because I am so young, work seems to be a hot issue. I can appreciate anyone not wishing to throw in the towel, but there does come a point regardless of how smart you are, or how well you dress, and how great your eye contact is…. Those have nothing to do with invisible scars that one cannot see from the outside…”

In addition to the daily struggle to cope with the pain and limitations of arachnoiditis, most survivors must also battle the medical community for validation and appropriate care.

 “(the practitioner)…diagnosed me with everything from Failed Back Syndrome to Post Laminectomy Syndrome to Myofascial pain syndrome, but he refused to use the “A” word. Yes, he kept it hidden to himself and allowed PM to continue poking me over and over again, more than 15 different times until the point came I had to stop working due to pain. Finally, I got on an airplane and I went 1000 miles away from here to see a new Doctor located in Columbus, Georgia. His name is Dr. Thomas Bernard, an orthopedic surgeon at the Hughston Clinic and he was the first to diagnose me, in 2009.

I refused to believe Dr. Bernard who explained to me in a very nonchalant manner that I was “suffering from a condition called Arachnoiditis”. I knew what that meant. I was in denial. I asked Dr. Bernard if he would send my MRI to Baltimore to be looked at by Dr David Mark Yousem. I do not believe that Dr. Bernard was insulted by me asking him to get another opinion. He was gracious and more than willing to send the films out for second interpretation.

He sent the films to Johns Hopkins Hospital in Baltimore, MD…well known to be One of the best hospitals in the USA. The Director of the Department of NeuroRadiology was the Doctor who gave me a second read. His name is Dr. David Mark Yousem, a Board certified NeuroRadiologist. It was confirmed that I had AA. It was also found by Dr. Yousem that I have blood present in my thecal sac causing arachnoid adhesions and the thecal sac is narrowed. Dr. Yousem also found granulation tissue behind the L4 vertebrae and extending all the way down to my sacrum. Dr. Yousem found that nerve clumping is present consistent with Arachnoditis. Dr. Yousem also found a disc bulge at L3-4. He also found that I have Endplate sclerosis at L4. Dr. Yousem described the L4-5 and L5-S1 roots on both sides and the thecal sac on these levels encased with granulation tissue.

When I confronted my neurosurgeon of these findings and explained to him that I went 1000 miles Away and obtained a second opinion, then he finally gave in. He used the A word. But he stated on the record that “We had been aware of this for many years”. That is not true. He was aware but clearly refused to share this with me in fear I would sue him which I would never even consider doing such a thing, that is what enrages me with anger. I wish he just told me, I would never have agreed to undergo any further interventional procedures had he just told me this simple fact.”

Injured workers who develop arachnoiditis must also fight for compensation of lost wages. This can be a long drawn out process with little legal assistance or medical support. With the physical limitations and impaired abilities of consequential spinal adhesive arachnoditis, the battle on this front is often complicated by the grief associated with job loss and the complicated adjustment to adaptive independence. Depression is not uncommon. Faced with obstacles, imprisoned by pain; suicide sometimes seems like the only path to freedom.
“Here is my diagnosis:
I am Status Post 2 Laminectomies
I am Status Post Multi level Interbody fusion with pedicle screws and cages
I have Arachnoiditis L5 – S1
I have blood deposits in my thecal sac L5
I have a disc bulge above my fusion L3-4
I have Endplate Schlerosis L4
I have hypertrophy of posterior ligaments L3-4
I have failed to rehabilitate

I have not worked since Nov 2006, that’s right 8 years.

The workers compensation Commissioner feels it is sad that we are not going to try to do something about working. Instead of seeing my family as caregivers, he saw them as being a burden because of what they do to help me. My neighbors and friends also are caregivers.

The Commissioner felt that if vocational rehab fails then of course, I am 100% disabled and it might be a total failure. He increased my rating from 90 to 92% total disability but found that I am not totally disabled because I refused Voc Rehab.

My doctors have said for years that I should not be working. He did not listen because he is “too softhearted”. He said the problem is “my age, and what he perceived to be my great appearance, amiable personality, good eye contact”, etc.
…  …  …
I believe the largest impact it has had to me in my life is the loss if my Job working as a firefighter/paramedic.

I began training for this job in 1992 and i continued working until February 1998.  My lifting injury occurred on the job in 1996, while removing a trauma patient in too much a hurry to get him into the trauma room at the hospital. 

I ruptured 2 lumbar discs and developed severe sciatica. I had 2 surgeries and went back to working full duty, but ruptured those discs again 8 months later.  Finally in 1998 the doctors felt that I had no choice but stop working in the fire service and that a fusion was needed for stabilization.

I miss working.  I miss the firehouse.  I miss the fire trucks.  I miss the medic unit.  I miss my coworkers, my “second family”.  I miss helping others.  I miss every aspect of work you can imagine.  The most difficult thing in my life so far was walking away from my work that I loved so dearly. 

Nobody with a fusion can pass the medical exam needed to return to work. I knew my career was over when the doctors told me the fusion was needed or the discs would continue to rupture again.  Only 3 days after learning that a fusion was in store for me, I attempted suicide.

I regret deeply and feel shame for trying to do such a stupid thing.  As a result of the trauma from the suicide attempt, I developed chronic PTSD for which since 2000 I have seen my psychiatrist every 2-4 weeks.”

Life with Arachnoiditis can be a lonely existence. The Art For Arachnoiditis Project is working to defy this isolation.

“ I am also only one patient and I know for a fact there are countless others out there who are desperate to understand the meaning of Post Laminectomy Syndrome. There are many people out there with AA who have no idea they even have the condition and continue the fight for pain relief by continuing to undergo these procedures which only do more harm. I feel lucky that I finally have some closure in what has been a long fight and a great mystery. 

I think the only way to increase others chances is to share my experience with them, to tell others there is hope, to be patient and listen to others, to not become complacent in the midst of a sever chronic pain condition, and to not be discouraged. Yes, there is no cure for AA, but If anything I do finally have some closure which I have desperately needed for years. I don’t see myself as a victim, because I don’t want others to see themselves that way. We are humans, and humans are a resilient species. We need to be strong as a group and community of people for the countless others who each day are learning they too have this problem and they need support, help, and understanding.

We are only defeating ourselves and allowing ourselves to be defeated, should we be victims. We are strong. We are the future of helping others with this problem and must be there to help others. Today, there is somebody out there who will learn they have this problem. They need us, they need our stories, they need our understanding and support. And I am here to do just that.”

Some survivors seek comfort and strength in God and their faith. Others find it in nature, spirituality, the arts, family and friends, or helping those in need. Whatever method serves, we must never let them believe they are alone in its discovery. ~slk