In October of 2009, I went in for a lumbar puncture. This would be my second one. This day changed my life forever. 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 the previous puncture, 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. I had a needle in my spine attached to a manometer 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, (that was out of his reach) he lost his balance, and in turn jammed the needle into the cauda equina spinal cord nerve roots, penetrating and puncturing through the frontal part of my sac. The sensation was beyond any torture I could have imagined. I screamed a silent scream of agony. Tears flooded my face. A dear friend of mine was with me during the procedure, holding onto my hands. The torture had only begun. Before the physician could remove the needle, he had elevated the table. That motion jarred the needle in my spine even more. This led me to also having to receive 2 blood patches due to CSF leak. The rest is a story of a journey through hell from medical harm that left me unable to walk and diagnosed with adhesive arachnoiditis, RSD/CRPS, and all that comes with it. Below you will find images of some of my medical records documenting part one of my journey.
Arachnoiditis, the scar tissue, starves the nerves of the essential nutrients derived from my cerebral fluid. 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. My central, sympathetic and parasympathetic nervous systems have been grossly compromised.
Between the years of 2010 – 2013 I lost count of the hospital emergency room visits, hospital admissions, and numerous diagnoses. In 2010, I was diagnosed with RSD in my back and lower extremities. RSD is also known as CRPS. I would suffer torturous spells of uncontrollable spasms, which at one point my gluteal muscle completely separated from deep within at the hip. This was extremely painful and took over a year to heal. My feet, legs, and spine would swell and become extremely discolored. I would also suffer from what is known as petechiae. Petechiae appears as small red or purple spots caused by bleeding into the skin. During this time I collectively spent several months unable to walk. I have honestly lost count of the number of times I have had to push myself and retrain my brain to walk again. Retraining my brain has become part of my daily routine. I am in a constant battle with my own being. I lost bladder function as well. I was unable to be touched, from allodynia. My clothes would hurt me, the air would burn me. I underwent two bi-lateral spinal nerve blocks, this threw me into a horrific flare. I was sent for a myelogram, which also sent me into a horrific flare, and I had to receive yet another blood patch as well due to CSF leak.
This brings me to part two of my journey.
In 2013, I was admitted into a local hospital with a severe flare of arachnoiditis and RSD/CRPS. A local pain doctor came to visit me, to offer me a glimmer of hope and take me on as his patient. He had reviewed all of my records, sat with me in the hospital and discussed my conditions with me and my family. When I was released from the hospital he put me on Morphine SR 60 MG every 12 hours, and Morphine IR 15 MG three times per day. He was aware I had seen one of the top neurosurgeons in our state, who had made it very clear I was not a candidate for a pain pump, or any other type of surgical intervention.
Below, you will find in his own dictated documentation that he agreed.
He convinced my caregivers that a spinal cord stimulator trial was our best option, which resulted in failure. Wait, didn’t he just state that any type of surgical intervention for arachnoiditis would only lead to further complications down the road? He then convinced them that without a pain pump implanted I would die, as my body would not be able to handle the levels of pain which caused my blood pressure and heart rate to stay so high. Enter pain pump.
Any good surgeon will tell you that when a foreign object is placed within the body of a normal person, scar tissue will develop. When one has arachnoidits and RSD/CRPS, the body is apt to attack tenfold, viciously. This procedure not only progressed my arachnoiditis, but also caused my RSD/CRPS to spread full body. Here is the rest of the operative report.
They cut through my flank (right within Gluteus Medus and Gluteus Maximus). There is what is called a safe zone in this area. However, in my condition at the time this procedure should have never been performed. I was unable to sit without leaning on the right side of my body. I was unable lay flat or on my left side. I already had RSD/CRPS in my lower body. The pump was placed in the left muscle. Because of the RSD/CRPS, the right side of my flank also felt as if the procedure took place there as well. It still does to this day.
During this time of having the pain pump implanted in me, I took thorough notes, pictures, and video. I repeatedly shared with the pain doctor the pain had increased, the pain had also moved throughout my whole upper body, and continued to show him the photos and journal of my pain. Each visit I showed him the swelling of the catheter protruding out of my spine as well. I knew something was wrong. I was cussed and yelled at by him in his office. I had a witness with me when this happened. He stated he would refer me to the neurosurgeon to have the pump removed. He had his secretary call the neurosurgeon and made the referral. Which he later denied in a letter to the state medical board. I have the documentation of the referral. I was then called by his wife and told that if I proceeded with going to the neurosurgeon he would drop me as a patient. During this time I had been to my appointments with him for refills with my pain pump. He was also having me come to his office once per week due to all of the complications I was enduring, none of which he documented. However, I documented my every visit to his office, including my road trips to his office, and took a witness with me. Obviously, I had a witness with me as I was unable to drive. I also have the documentation that shows the amount of medication filled each time, and that the pump was in fact delivering the correct amount of medication.
Four days before having the pump removed I was due for another refill. I was expressed my concern to the neurosurgeon and his staff that I feared having this pain doctor perform the refill. This too was documented. I had no choice or I would have gone into immediate withdrawal. The doctor would not allow me to come to his clinic for the refill, but instead had me meet him at a local hospital. We were told we would not be allowed to have a witness in the room with us as well.
By that evening I began to go downhill. The next day, I thought I was going into a horrific flare. By the day of the surgery, I just knew I was in a bad flare and that hopefully everything would be alright.
Day of surgery arrives to remove pain pump. (October of 2013) Procedure went well. Unfortunately, due to the massive scar tissue the catheter could not be removed. The catheter goes in at L3 and runs up to T9 in my spine. My body continues to attack it with scar tissue growth. The neurosurgeon came to see me in recovery. He told me I had not been in flare. He stated they observed the pump and it was not working. It had the full volume of medication in it. I was in withdrawals. Withdrawals that after this procedure almost took my life. There were numerous ambulatory trips, and hospital admissions fighting for my life. After a several weeks, I somehow managed to survive that which I was not expected to. During this time, I was also overdosed on 100 mcg fentanyl patch at a local hospital (not the same hospital which I credit to saving to my life) However, I will say this. The doctor who did this, saw my intense pain and suffering and after reviewing my records and seeing the amount of medications this pain doctor had previously had me on, she truly thought my body could handle it. She certainly did not mean me any harm.
My journey through medical harm, arachnoiditis, RSD/CRPS, and all that comes with it has been a journey through hell. However, through this hell, I have learned a lot and have truly been blessed. I learned how strong I was. I learned that most powerful weapon any of us have, no matter the battle we face, is our brain. I have been blessed in knowing that by sharing my story I have been able to help countless chronic pain sufferers who live with arachnoiditis, and RSD/CRPS and other chronic pain conditions. That alone is the only good that has come from my journey. I have lost family through this, and at times I almost lost who I was. Unfortunately, so many others have to endure this same loss. The fortunate ones, have their families and spouses stick by them and help them by encouraging and supporting them. They put forth effort to research not only the physical conditions, but they are understanding to the mental battle we face as well.
A gallery of my images can be viewed from my Facebook Albums
Throughout my journey, I began spending my time researching copious amounts of information. After the events of 2013, that is what consumed the majority of my time. I knew there had to be a way to live with this condition and not be dependent upon opioids, or other mind altering, organ destroying medications to do so. I was determined to find a way. I can now say that on the day of me writing me this article, I do not take daily RX medications for pain control. Everything I do is what I reference as Primal Medications. I use essential oils, organics, and I eat an anti-inflammatory diet. Does this mean I am pain free? No. Does this mean my body doesn’t burn? No. Does this mean the jelly fish in spine no longer attacks me? No. I’ve just learned to control it better by equipping myself with the necessary tools to assist me in better pain control which has given me a much better quality of life, and has added back to years of my life that was taken from me. I have learned to own my condition, and you can too.