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 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