Monthly Archives: September 2014

Stuck on Survive

Since September 2012 former Police Officer and Musician, Jack Pavlekovich, with the help of his family, has been struggling to survive.

Jack last performed live with his band and his daughter in September 2012, when he received an epidural steroid injection shortly before the performance. Jack had previously had back surgery to repair/manage an injury that he suffered in the line of duty as a Police Officer in South Bend. Although he had several epidural steroid injections which helped manage his back pain, eventually his condition warranted a neurostimulator implant in his spine.

He experienced some relief from this procedure. Eventually, the implant stopped helping. Jack again received epidural steroid injections to manage his pain. Although the first series of injections did not seem to have any adverse effects initially, the last two he received at OSMC in September 2012 were contaminated (at NECC) and he developed life-threatening Fungal Meningitis. 751 other people also received these contaminated products. To exacerbate the initial fungal assault; the neurostimulator implanted in his spine had broken and was actually pumping this fungus into his nervous system as well as his spinal fluid. After intense and expensive treatment including on and off treatments with  voriconazole, an anti-fungal medication , from October 2012 to April 2013; he showed signs of improvement with an all-clear for fungal presence in the spinal fluid.

However, all of his symptoms resumed shortly after he had completed the voriconazole treatments. He was sick off and on for months. Doctors could not figure out what was wrong. His chart stated that the fungus had been cured. Finally, in March 2014 a Beta d Glucan Assay was conducted. Jack and his family were informed that he was the third one to be RE-INFECTED with the fungal meningitis. He was put on a different anti-fungal medication,  Itraconazole to fight it. Jack has spent a great deal of time in the hospital and in  ICU. His spleen had to be removed as  a result of this attack on his body.

Over the weekend, I had the  honor of meeting Jack and his family for inclusion in the Arachnoiditis Survivor Portrait Project.  After coming face-to-face with death, Jack and his wife Tammy strive to resume stability for their two children, Ashlee and Jamie. As a result of this preventable near-fatal illness, Jack and Tammy expressed concerns that the girls, “have had to grow up too fast.”

Witness to their father’s painful and debilitating experiences, each of them is attempting to find a way to cope.Behind her lovely smile, Ashlee seems to have developed a quiet strength which permits her to keep her own counsel about her fears while offering an arm to assist whenever she can.

Sep 20, 2014

Writing and illustrating her own book about their story, Jamie has turned to art as a means to describe this battle to others and allows her bright sense of humor to ease the weight of this reality.

Sep 20, 2014 Sep 20, 2014

Jack and Tammy have replaced “date night” with Doctor’s appointments.

Researching complex medical information pertaining to Jack’s case and faced with very tough decisions about:  his care, the financial realities associated with this combination of insult, illness, and injury, and how she can keep her family strong, Tammy, who is coping with some stressful medical concerns of her own; continues to seek answers .OLYMPUS DIGITAL CAMERA Sep 20, 2014

For Jack, it is painful to see how this affects his family. He knows his children are always looking for the father they know is in there somewhere. With so many variables churning around his medical outcome, it is difficult to reassure him that he will find new ways to be an active participant parenting his children. Illness and injury of this magnitude elicit a daily , moment-by-moment fight to inhabit an injured body and a wounded soul attempting to walk in the land of the living while we dangle our digits over the precipice of the grave. Grace is scarce. Time is limited. Anger is abundant. Hope is fragile.

Recently, Jack was informed that this fungal infection in his spine has resulted in Spinal Adhesive Arachnoiditis in his neck and the L3 to L5 levels in the lumbar spine.  Faced with the pain and isolation of this double whammy of medical injury, Jack says that his Family, their cat-Hailee, His Music, and His Computer are the things that keep his interest and help him to not give up. Jack has asked that these elements be represented in his Conceptual Portrait. The portrait will be shown in progress on the Art For Arachnoiditis Facebook Page and displayed in the public art Exhibit to increase Arachnoiditis awareness. Jack will receive a free copy of the drawing to keep.

It is expected that Jack and his family will always have to monitor, and sometimes seek treatment, for signs of a recurrence of the fungal infection. Now, Jack and his family will also have to learn to navigate the ins and outs of living with Arachnoiditis. Litigation promises some level of financial assistance however, any compensation award distributed by NECC will have to be divided among the 750+ people affected by the injurious, contaminated products in these spinal injections.

The neurological injuries and extensive medical treatments he has endured as a result of this infection have damaged his vocal cords and make it difficult for Jack to play his guitar or remember the notes and order of the music. A long time musician and performer in the band, Chantilly Lace, Jack misses creating music and sharing it with others.

I believe healing can be found in the arts. Perhaps there are adaptive methodstools,  or equipment that will permit him to play again when he is ready.

~Sheila L. Kalkbrenner

 

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Not All Scars Are Visible

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 encased 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 consumes 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

~Melanie Lamb

For more information about Arachnoiditis I found these websites to be very helpful and informative.

http://www.burtonreport.com/infspine/adhesarachanatomy.htm

http://www.lifewitharachnoiditis.com/

http://www.arachnoiditis.info/about_arach_main.html

http://www.arachnoiditisusa.com/

http://www.youtube.com/watch?v=QL6z1DnoJao&playnext=1&list=PLFE7D04E18D51AE59

http://www.youtube.com/watch?v=NxsenvqYClw   (this is a video of me going through an episode)

Follow Melanie’s arachnoiditis and RSD/CRPS story on her facebook page.