Not all scars are visible. Not all wounds heal.
There are many faces to those of us who suffer from what is called Arachnoiditis. There are the faces of those with arachnoiditis cysts, and the faces of those with what is referred to as Adhesive Arachnoiditis- empty sac sign. There is no cure.
This is my face.
I have Adhesive Arachnoidits- empty sac sign.
In October of 2009 I underwent a common procedure called a Lumbar Puncture. This was needed to check the pressure of my spinal cord fluid as I had been diagnosed several months prior with what is a called Psuedo Tumor Cerebri. That’s right, basically a false tumor. This day changed my life.
I was uneasy. The whole morning had been a mess. The hospital had lost my files. It took almost three hours to get into the surgery room. During previous punctures, I had been sedated. Not this time. No sedation, not even a muscle relaxer to calm my nerves for this procedure. The physician performing this procedure did not have an assistant to help him reach for the tools on the surgical table. I had a needle in my spine attached to a tube to record the pressure. At one point the physician couldn’t reach a specific tool he needed to finish the procedure. As he reached for the table, he got off balance, and in turn jammed the needle into my spinal cord nerve roots. The sensation was beyond any torture I could have imagined. I screamed a silent scream of agony. Tears flooded my face. My best friend Kevin, was with me during the procedure, holding onto my hands. The torture had only begun. I am not sure how Kevin survived the event, let alone me in all honesty. Before the physician could remove the needle, he had elevated the table. That motion jarred the needle in my spine even more. The rest is a history of hell. It began with peripheral nerve root damage. Every day of my life, since that procedure, I have experience some degree of agonizing pain. It erupts inside of my body. What level of hell I will be forced to endure, on any given day I do not know.
The lower two segments of my spinal cord nerves are incased in scar tissue. This scar tissue starves the nerves of the essential nutrients derived from my cerebral fluid. The very life is being squeezed out of them. The spinal cord nerve’s purpose is to feed and control specific organs and muscles and send information to my brain. The scar tissue has devoured them; attaching itself to the wall of my dural sac, leaving me with what is referred to as Empty Sac Sign. Meaning if you opened up my spine, you would not see that part of my spinal cord.
Empty Sac Sign, causes the body to suffer stages of shock. It is a repeated trauma; muscles ripping uncontrollably at times, as the nerves begin to misfire. Without exaggeration, I feel every fiber separate.
For most people, when they walk or sit and lie down, their spinal cord moves, glides up and down. Mine does not, as the nerves are adhered to one another, hindering certain movements, and causing pain with all other movements. There is a burning within that never subsides. I repeat, NEVER. It is not like someone lit a match inside you, or the burning associated with a torn muscle. It is as if a volcano were erupting from deep within. The lava consuming every fiber of my being.
There are many by-products of having this debilitating condition. Atrophy, RSD (Reflex Sympathetic Dystrophy Syndrome) Drop foot and Neuropathy are just a few. Loss of range of motion, discoloration, swelling, extreme burning, and the feeling of bugs crawling under your skin, muscle loss which causes weakness, become a part of life. Sometimes the skin sensitivity is so extreme, even wearing clothes is too much to bear. Sustaining mental focus due to unrelenting pain is a constant battle. Sleep is disrupted every night. Even while medicated, I can only sleep a few hours. The process of waking causes stimulation. Stimulation causes spasms, deep inner spasms. Spasms cause pain. The burning sets in. It is a never ending cycle.
The spine can never be entered again, not even with the tiniest of needles as it will only irritate the nerves and progress the growth of scar tissue.
Sitting irritates the nerves. Standing irritates the nerves. Walking irritates the nerves. Attempting to take on what would normally be considered as everyday tasks, irritate the nerves. When these nerves become irritated, swollen, compressed even more on to one another, the internal hell heightens to an indescribable level. For caretakers, family and friends coping with another’s pain is unbearable. Helplessness surrounds us all during this time.
Days are difficult to plan. I can no longer depend on a schedule, because my body will dictate otherwise. I reach a point where I wonder to myself; will I be able to walk today, and for how long? It is a painful process, both mentally and physically. Losing the mobility and strength of my muscles is agonizing. There is nothing to numb the pain during this process. I fight the resistance in each step with all I have and, do my best to smile to shelter those I love from my pain.
I used to run. I used to ride horses. I used to love to go for rides in a jeep, of course top down. I used to run tracks. I used to train dogs that have been deployed and, served internationally providing security and protection for us all. I used to be on the end of a leash.
Things are different now. I am learning to pace myself. Learning to work from the bench so to speak; “sit on the porch” as my oldest son says.
I continue to give myself to God each and every day to work His will through me, to help others through me, to touch the lives of others. I tell myself every day, that it is possible this happened to me instead of the little old lady or man that may not have survived it, or maybe I took the place of a child on that day. I tell myself God has reason in all of it and his Son went through more than this for me. It is the least I can take on.
As a final note I must acknowledge and thank the many care-givers of those who suffer from this debilitating and torturous condition. You simply save us and get us through, when we feel we can’t take the pain one more minute. Without you- we simply could not survive.
My name is Melanie. I am a child of God. I am a mother of three children. I am a Grandmother (Gammy Mel). I am a K9 Trainer and Handler Instructor.
Every day is a new day, and this is my now.
“I can do all things through Christ which strengtheneth me.”
Philippians 4:13
For more information about Arachnoiditis I found these websites to be very helpful and informative.
http://www.youtube.com/watch?v=NxsenvqYClw (this is a video of me going through an episode)
