First, I want to praise the leaders of ASAMS, for a job well done. They are making strides to hopefully help people like myself that suffer so unnecessarily at the hands of this monster that we call adhesive arachnoiditis. I want to irradiate this disorder as we know of it today. ASAMS is by far, miles and miles ahead of other support groups on the net, as they are doing something continuously trying to help the victims of arachnoiditis. Whether it is to get the proper access to appropriate, quality medical care or seeking ways for research that we all so desperately need. Additionally, ASAMS wants to help bring about public awareness, both medically and non medically, so that others will not have to suffer so needlessly as we do. They try to encompass the entire person by their caring approach. They see the individual as a real person, thus having arachnoiditis basically affects every body system, their approach is that way. They too include other important issues such as our families and loved ones, since ultimately they too are touched by this monster: Arachnoiditis. Thanks ASAMS for a job well done and I hope that by me sharing my history, it will help to attain what your ultimate goal is. To put a halt to arachnoiditis as we know it today. Personally, you have helped me through so very many trials and problems, and too much more. Mere words can not fully relate to you the appreciation that I feel. However, Thank you, is all I have to offer and for you to know that whatever you need for me to do, I will try as you continue to help us all with the horrible, unnecessary, life changing diagnosis of arachnoiditis.

MY LIFE IS FOREVER CHANGED BY THE DEVASTATING EFFECTS OF CHEMICAL INDUCED ADHESIVE ARACHNOIDITIS: THE SAD PART IS I DIDN'T HAVE TO GET THIS, IT WAS GIVEN TO ME SO UNNECESSARILY

This is the history of me, Donna Phelps, I am 42 years old and my life has been forever changed at the hands of a cruel, unnecessary, painful, "given" disorder, adhesive arachnoiditis. If only I had been given the proper consent information, I might still be that person that was so full of life, that loved her job as an operating room nurse, that enjoyed playing and doing things with her daughter, Whitney and her Husband, Jerry and all of her wonderful family. Today it is a struggle to even survive from minute to minute, against this life filled with pain, as I slowly yet surely continue to fight to stay alive.

Pain, what is pain, Pain is something very hard to understand. I can't feel your pain, I can't touch your pain. A person's pain is something that only he or she can fully describe. My entire life has been forever changed by pain. I never knew that one person could withstand so much of it and not merely crack under it's pressure. It's a constant daily routine to fight it and continue to fight the fight to stay alive and one step in front of it. It all started in l996, I'll try to help you, the reader, understand just what this devastating disorder has done to me.

In l986, on the way on a trip to Water country USA with my best friend, Joette Short, her husband and child, my back just didn't seem right. Upon trying to get out of the car, my legs wouldn't move, After seeking medical help at a number of different medical agencies, over the weeks to follow I went to a chiropractor, general practitioner, Orthopedic Doctor, etc. I finally decided to contact my OB/GYN Doctor, since I had been extremely close to him by my unusual pregnancy 2 years before. No one found anything, I thought, If someone will just listen to me, there is something wrong with my body. My OB/GYN Doctor, Dr. Godwin, made a call and got me in to see an old military friend of his that was now a practicing neurosurgeon. My herniated disks were found, operated on and I was back to work within thirteen days, a new person. Never had any other problems whatsoever other than an occasional "sore back" that some R&R wouldn't take care of.

In l989, I was a single mother, raising a child by myself, my husband had decided that he didn't want to be married anymore after I was pregnant, so I was left at three months in my pregnancy all alone. Let me back up here a minute and tell you the birth of my child, Whitney Claire Abbott in l984, was the best thing that had happened in my life in a long, long time. I knew all to well the struggles of a single parent and too the financial repercussions. In l989, I decided that being this typical single parent status, working for bearly more than minimum wage was just not the way that I wanted my life to be, anymore. I wanted more for my child, I wanted to provide her with things that she wanted, not just the things that she needed. I too had always wanted to be a Registered Nurse, but how would I ever accomplish this, it was not even thinkable, so I thought. I proceeded to find out all the information that I could, talked it over with my very supportive family, prayed about it a lot to Jesus Christ, my Lord and Savior, made a great many decisions and enrolled into Nursing School, at the local community college. I worked nights, weekends and holidays as a nursing assistant at the local community hospital. That era of Nursing, it wasn't unusual to have one registered nurse on the floor, two licensed practical nurses and the rest nursing assistants, it was called team Nursing. The Registered Nurse was responsible for the entire unit, the LPN's were basically passing our medications and doing wound care and the Nursing Assistant was left to do the rest. The Nursing Assistant actually took care of the patient. There were nights that I would have fifteen patients by myself. It was a hard, hard job, but I learned a great deal, not only about nursing, but about life in and of itself. I saw how many elderly people were left there all alone, they were so lonely, I thought how can people do this? I too learned how a needy patient and the hospital were viewed differently by some. I too learned that I would never ask anyone to perform something for a patient or anything for that matter that I wouldn't do myself. Basically, nursing assistants were left to do all the "dirty work", bed pans, changing diapers, changing soiled linens, collecting urine, emptying urinary bags, etc. Some of these patients were pretty much immobile, so it was a truly unique systematic way of doing things. One had to find a way to get a three hundred pound person on the bed pan while trying to collect the waste without spilling it, which could only lead to other problems. So, indeed I learned a great deal.

There were times within my educational endeavors that the case load of courses and their demands were so that it was impossible to work. There just weren't enough hours in the day to get done what needed to be done, and too there was the issue of money where would it come from. I borrowed money on Student Loans and tried to make ends meet. God in his gentle way, always provided as Whitney nor I ever went hungry. I did it, it was extremely hard but I did. This will prove that when you put your mind to do something, you can do it!! Now, it was not all rosy by any means, and I definitely appreciate my education, I had to work very, very hard for it. Remember, the maximum I was making was five dollars an hour. When you have a house payment, car payment and a small child, it is hardly a dime left for anything else. This would not have even been possibly without the love and support of many of my family members, especially my mother and grandmother. My Lord and Savior, Jesus Christ, too was what I leaned on, he provided a way and held me in the gentle palms of his hands, carrying me along the way. This was all so overbearing. There were times when I though, what in the world have I done.......then to pass a test or make one of the highest grades in the class, it was wonderful to know all the hard work paid off. I completed my education, while being a member of the Honor Society and maintained a 3.9 GPA. I am extremely proud of my accomplishments, but they would not have been attainable without the ones that I have aforementioned. To Whitney, the love of my life, I owe you so much for all of your years of understanding and patience with me, I though once school and all was over, it would be our chance to do the things that we loved to do. Little did I know that my life would be forever changed as yours did, thank you for helping me out, in every way that you could. I assure you, you my child will be rewarded one day, I promise you that!!! Not on Earth but at a much, much better place.

In April before I was to be pinned as a Registered Nurse in June, I was give a job as a operating room nurse, something that I had wanted since before my dreams came true of being a nurse. This too was an accomplishment in and of itself, most new nurses were sent to med/surg floors, specialty units just didn't take new graduates. However, I was very fortunate. I started to work the week after school at Duke University Medical Center, a world known medical center where the latest technology and best of medicine was. I was so happy to be allowed the opportunity to work for such a prestigious organization. Initially I wondered how I had gotten myself into this situation!!! It was extremely hard, the surgeons were well...arrogant, to say the least, they would pitch fits and throw things if things weren't going their way. It was extremely hard at first and I had a preceptor from "hell". She was extremely hard to get along with, I finally was afforded the opportunity to opt out from her hold and get with another person that was much easier to get along with. This initial person told me I would never make a OR nurse, but I knew different, I knew that whatever I set my mind to do, I could do it. I didn't need her bogging me down with her attitude. From that point of being with someone else, the rest is history. Everything started coming together, it was a whole different world. Things that she had me doing, made no sense now, too I later learned that she was a very troubled person. I gained much respect from my colleagues and the Surgeons. I was very proud of my accomplishments. I too wanted to climb the clinical ladder within my job classification at Duke, I attained that as well. Additionally, I wrote for and passed the National Certification of Operating Room Nurses. I tried to stay abreast on all the "new" in OR Nursing by becoming Trauma Certified, Advanced Cardiac Life Support Certified, a Basic Life Support Instructor, etc. I absolutely loved my job. I decided to continue my nursing education for a BS degree in Nursing. I now held an ADN degree, and although we were Registered Nurses, there are several degrees within the field. In order to do this I had to work the night shift 7pm - 7am and also other off shifts like 11am - 11 pm, Holidays, etc. This way it enabled me to go to school during the day. It was extremely hard. I met someone that would change my nursing life forever. This person had been a LPN/Certified Surgical Technologist and had been working at Duke for probably thirty or more years. She was from the "old school". She knew that I wanted to learn, every one's inner most desire was to be like her at their job, she could do any kind of procedure there was. The Doctors and Residents all knew her, she was superior in her field. New residents to surgery knew that this woman, Ann, could make or break you in your operating room experience. She was the kind of person that knew what you needed to get the job done. If you were nice to her, instead of embarrassing you in front of the attending surgeon and handing you what you asked for, she handed you what you meant to say you needed, and what you did need. She befriended me or like I say I bemothered her, she taught me all the tricks of the trade, even how to handle those little temper fits some of the surgeons would have. I remember her telling some new doctor one night, now we can do it your way and throw stuff or whatever, I'm here for eight hours and it doesn't make any difference to me. Or we can do it my way, and it will be much easier on all concerned... They did it her way, she knew what she was doing. She was the BEST patient advocate. I think one of the greatest accomplishments an operating room nurse could ever have is having a person to tell you If I'm ever brought in here, I want you to scrub with the doctor or I want you in my room circulating. She told me this and I became the nurse that I wanted to be, I yearned for it, she believed in me. It too is indeed an honor to be "hand picked" to do certain cases. I remember doing one of those for the Discovery Channel on Liver transplants. I assisted during that and too it was an honor. Being that person's advocate, making sure things are done, being their eyes, their ears, while they are under anesthesia, they really appreciate you. I really loved my job. I was very honored at the many different surgical procedures that I was asked to be a part of, all along the way. Along with these surgeries, were many, many different tools for getting the job done. Trays and trays of equipment were needed and too they needed to be sterile. They were extremely heavy, a couple of them, that were used during big abdominal cases even weighed upwards of 50-60 lbs. That's a job in and of itself to get this cleaned and autoclaved while too keeping it sterile. It was a hard job, but one that I loved dearly. I too graduated from school, again. I now had my BSN in Nursing. I continued to work on my advancement on the clinical ladder. It was so great to have the certifications to now sign my name with all it's titles. Donna C. Phelps, RN, BSN. CNOR, TC, ASN/CNII.

We are up to June 6th, l996 in my life and where my life will be forever changed by the devastating result of some legalized medications that I would soon be getting. On 6/6/96, I was in the Operating Room #16, we were getting ready to start a normal everyday kind of procedure. This particular case, I was circulator, my scrub nurse and I were setting up, getting the room ready for the patient to be brought in. The patient arrived at the room, all necessary things were done, and once he was positioned, I removed the bottom part of the OR Table, which weighed around five pounds, to aid in his positioning. I went to place it on the floor when I felt a huge pinch in my left hip. I looked at my scrub nurse and she said "What's wrong with you?" I said "Did someone just grab me", she answered "No, what's wrong." With that I took a step, which I would later learn was my first step towards my new way of life that I now live. I had suffered a ruptured disk at L5/S1. After conservative treatment, the decision was made to operate. I wasn't that worried, I had it done 10 years ago, a hemilaminectomy at L3/4, L4/5 with a diskectomy at L4/5, and after all I was only out of work for 13 days then. Medical technology had come a long way in 10 years, and I just knew that I'd be back to work in no time. I too remember the surgeon saying, you will be out of work 6 weeks, no more, no less, six weeks peroid...However, now I did have more financial responsibilities on my hands. I had recently got married to a wonderful person that had finally helped to delivered me from being in a five year, very abusive relationship. We were married on February 24, 1996 and my husband had recently gone through open heart surgery that was needed due to a ruptured circumflex artery in the catherization lab. In fact all they fixed was the circumflex artery (supplies the posterior portion of the heart with blood, etc) not the other blockages, since they didn't know if he would live. I had only been married since Feb., and now look what was happening. He was recuperating at home now, indefinitely, which has since turned into total permanent disability from that and other problems that arose from that. 1996 was definitely not our year. However, I knew that I couldn't live with the never ending pain, I worked up until the day before surgery, I had to financially, although I did have a 10 pound weight restriction. I went to the Operating room that July morning, I was in good spirits, I just knew that everything would be A-OK!!I was having a hemilaminectomy at level L5/S1 with a diskectomy at S1. I had the best of the best of surgical teams, I knew that they would take good care of me, after all I hand picked each of them and too I was one of the family!! I was in the recovery room, waking up after the surgery when I thought, well have they finished yet. They allowed my family to come in to visit since I didn't have a hospital room yet. There I told them, this surgery was not like the first one, 10 years ago, I STILL HURT!!! I had instant relief from the one ten years ago....I knew from the very beginning, something was just not right. After being released from the hospital the very next morning, we had a hurricane to hit that night. A great deal of wind, minor damages and that's when I learned how the lowering of barometric pressure could wreak havoc on someone's body filled with pain. Truly unbearable!!!I was sent home with a medrol dose pack, thinking that maybe the steroids would cut down on any inflammation that was going on. Then, as most of us have been from time to time, I was looked at as if was I still sure that I was hurting. Yes!! I hurt and how dare them to think otherwise, I thought. About seven weeks later, after batteries of tests, including myelograms, steroid injections, nerve root blocks, etc. I was back yet again "under the knife" doing the same procedure that had been done just weeks before. This was the second time in a short period of time. My husband and mother both told me that this surgery took a long time, much longer than the one just weeks before. It was found that I had a free fragment of disc, that was either left in or it had reruptured. I personally know that it was left in from the surgery weeks before, since I hurt just as I did before ever having surgery. I was released from the hospital the very next morning, another Hurricane hit that night, Hurricane Fran and all of her fury. Again, I experienced the worst pain, the barometric hovered under 30.00 making for a very painful experience on top of another surgical procedure. Then I too knew something more was going on that I had been told, I knew that something was just not right.

Time went on, still my life was filled with excruciating pain, it was now time for my six week follow up appointment and honestly I hurt so bad, my legs I thought they would literally fall off. Sometimes I often wished that they would. My hips too hurt with such pain, I had never experienced anything quite like it. The pain of child birth, but even after a while this was over. Yet this cramping, squeezing, burning in my hips and legs had no sign of relief in sight. I had done everything I was suppose to do post operatively on both occasions. I was not to sit at all during the first six weeks nor the later six weeks, I had not, not even during the period between, I had worn my brace upon getting up, in fact I wore it a great deal of the time, I felt that my back was better with it on. It didn't feel as if it would break into, the feeling I had when I was allowed to take it off. By this time, the different medical personnel are looking at me and wondering, is this in her head? NO!!! It was not in my head, it was in my legs, it was in my hips, it was my back hurting. Yet, I still remembered the horrific pain that I felt during the myelograms that were done with Iopamidol, aka isovue, and the depo medrol epidural injections, the nerve root blocks, unlike any pain I had ever had....could that have been my whole problem? I was looked at like a person that was "drug seeking", I was drug seeking, seeking to find a drug that would make this horrible pain go away, it never happened.

This was a workers compensation case, as well. I had never had the opportunity of working with workers compensation before. Sure, I had heard nightmare stories of it, yet, I wanted to decide for myself. After all I was different than the rest, I did still hurt, I was still injured, I thought that the stories that I heard wouldn't apply to me....Was I ever wrong. I went through several WC Nurses. Then I had the last one that I would ever have. Immediately she tried to take over my care. Something, that was definitely not going to happen since I, myself was the captain of this team. The doctor/surgeon fell close behind at second. She would be able to participate, yet she would NOT dictate what I would do and not do. Or so I thought. She was instrumental in getting through the system without a doctor's order that is needed. She caused me to have yet another myelogram, without my doctor ordering it. I didn't find out till the day of the myelogram, no doctor had ordered it, not from this hospital anyway. They wanted to know who to contact if something went wrong. I told them to contact the surgeon there, although he didn't have a clue what was going on. He was furious that she be allowed to make this test happen. He did not write the order for it, however I was on the table and it was carried out. She too was instrumental in having me under go rehab at a exquisite rehabilitation program owned by a prominent neurosurgeon, that had to examine me to see if he thought it would help me. Of course, he said that it would be just what I needed. Isn't that a conflict of interest? I assure you this one was. I suffered for a couple of weeks and finally told them all that the commute of 140 miles a day, round trip, was doing more harm than good. Yes, I did feel the hydrotherapy and it was helping, however upon finishing it, I couldn't walk to get out of the pool. The final straw was the day that my Father had to literally pull me out of the car when I got to his house. I tried to go home but there was no one there to help me get out, I had to get to him to have him literally pull me from the car. I think that finally then, they knew something more was going on. The workers compensation issue went on for months and months, then year and another year or so. Many tears were shed because of this. My life of normalcy had changed to one of a life filled with pain. Little did I know that now my life would be forever changed to one of that would never ever be the wife, mother, daughter, sister, niece, aunt, grand daughter or even friend that used to be. NEVER!!! After all the happenings of Workers Compensation and believe me the horror stories are true. Just get an experienced attorney, that's what I did and it did help. Take it from me, don't experience the ordeal without one. I did have some information to come out of the non doctor ordered myelogram though, that I didn't have before. The neuroradiologist stated in his finding that some of my nerve roots were truncated, they were intertwined which was suggestive of adhesive arachnoiditis. what was arachnoiditis, what was adhesive arachnoiditis. No one had ever mentioned it to me before, why...I started my own research right then, and what I learned has helped me to try to accept what now is my current way of life. It was devastating news, It was news that let me know that I would forever be the way that I was then and to only get worse as time when on. My life of pain filled days and nights were not going to stop, I had better get used to them and learn to live with them, they would be my constant companion, although I so wanted for the pain to just go away, it didn't. It hasn't since all of this started in 1996.

I thought I knew pain in 1996, boy were my eyes opened widely, I suffered much more than I ever thought imaginable. The pains grew in intensity they grew till I often had the thoughts of suicide. I thought that suicide would finally end it. I would then be free from all the hurt that had grown to be a part of my life. I was being selfish, what would happen to my child, my husband, to the ones that I loved so very much. I couldn't do that, I couldn't cause them the emotional pain, however it was too painful to watch them as they watched me only getting progressively worse. I found several sites of information on the internet. In fact I joined some support groups. I learned everything that I could and It was all falling into place. This was me, these were my symptoms, this unbearable pain that they spoke of, I knew it, but why wouldn't I be told this by my surgeon. To this very day, he has never admitted to me that I do have adhesive arachnoiditis and he probably never will. This surgeon is someone that I instilled a great deal of trust into, why had he done me so wrong, why hasn't he ever spoke the truth rather than trying to evade it. I do have doctors now that do know, have talked about it, however the surgeon never has. Remember the contracted workers compensation nurse that was the reason I had to have an additional myelogram, although not doctor ordered, which only added insult to injury, she too was responsible for some more unnecessary stress and heartache when it was time for a trial of spinal cord stimulation. After all was said and done, my surgeon and rehab doctor felt that due to my condition and too my progression of pain I should be sent to a major hospital that knew and did many spinal cord stimulator cases. Instead of heeding their warnings of what could happen, she insisted on doing it her way. I was not allowed to go to Johns Hopkins, as had been recommended. Not listening to the expertise of the doctors, that were handling my care, she said that I would have to go where she sent me to and have the doctor do it that they wanted to do it. Although, I was not happy, to say the least, I proceeded to be worked up for a trial of spinal cord stimulation. Nothing else had worked, I had to try something different. I had a friend that had been diagnosed with the same thing as I had and too had her spinal cord stimulator put in by the doctor that this Nurse was demanding that I go to. My friend never took another step after this doctor inserted the permanent stimulator, to this day, she has not walked again. After all the arguing and fussing, I had to have some relief, I finally agreed to proceed with it, it was the only way that it would ever be allowed to be done. I would do anything to stop this pain!!! The stimulator was put in, the worst operation I had ever been through, one must be awake to help with the initial placement. The nurses with me, my friends, said that my screams of pure horror in this horrible pain were nothing more than human torture, watching me go through what I had to do, After this was finally completed, the surgeon came to my room and attempted to program the unit along with his "so called nurse", that's another story for another day and time. They were unsuccessful in getting it to work properly. It appeared that the electrode was placed so that I was feeling it in the wrong leg, the better of the two. Making this portion shorter because of time restrictions and the length of this ordeal, I was scheduled for surgery again within the next 4 or 5 days. I would have to have replacement of the electrode, I did it and again when they tried to turn the stimulator on, I hurt so bad. It was found out that the stimulator was stimulating my bowel as well, thanks to my Husband, Jerry, he found this out by merely watching what was happening to me. I had nasogastric tubes down my nose, x-rays done, I begged to die, no amount of IV pain medicine was helping at all, even consults from general surgery thinking that I had a small bowel obstruction...all it was the way that the spinal cord stimulator was affecting me. It was decided to withdraw this from me totally, the doctor was not pleased, but it was not my fault, my body just would not allow it. I had tried so hard, I had done what that nurse and workers compensation were so adamant about. I had undergone 3 surgical procedures in l l/2 weeks. Each one added more insult to injury because of the arachnoiditis. Thus far life with arachnoiditis had been a nightmare and continues today. It was decided that I was not a candidate for the interthecal pump as well, as they could not "get in" there was just too much damage there. A mere lumbar puncture, spinal tap could paralyze me, forever. The scars on my outer back are reminders today of this barbaric surgical procedure. They still hurt and ache today, I had a thoriac portion of bone removed to have this done as well. It hurts still today!!

I had done everything that I knew to do. I went to Chicago laying in the back of a van driven by my husband, that was still not doing well physically. In addition to the heart problems, he now had developed fibromyalgia to the point of being unable to get our of bed some mornings, he too had severe sleep apnea. The van had a built in bed with TV and all the luxuries one could ask for, but it was still so hard to ride, anywhere in anything. My best friend, Joette Short and her husband, Andy lent it to us because they knew that it would be the only way that I ever could possibly get there. People at my church took up a "love offering" and that's what help us go, I couldn't have without it, we were having financial nightmares. People told me that this Doctor could and would help me. Again, NOT...he put me on medications that I didn't even know where I was. The day after my return from Chicago, I was taken to my local primary care physician's office. She called around to this doctor and other doctors that had taken care of me. She took me off of everything he tried. In addition to all of this I am now allergic to twenty-one different types of medications. The only pain medication that I seem to tolerate with any efficacy is oxycodone which is compounded with lactose only. This in and of itself has lead to many dangerous situations and nightmares. I follow up with a urologist once a year, I suffer from neurogenic bladder and bowel. I go from wearing diapers to catheterizing myself, to wetting myself since I "can't get there in time". Wearing diapers at 39 year of age, how disgusting....how humiliating, however it continues and now I'm 42. The diapers are so hot and worrisome, I think well maybe I can get there, I end up changing myself when I want to try this and too there are the times that I must catherize myself since I am unable to void. I also see my rehab doctor that continues to follow up with me twice a year. We try all the new things that have come out, still nothing helps. My pain doctor, I continue to see as well and I must say has tried along with many others to get me comfortable. This too hasn't been as successful as we would like for it to be. My primary care provider is my mainstay in the medical field, she is the person that I depend on to get me to which specialist I need to see. She saw me just the other day and said, I just wish I could do something for you. She is truly empathetic to my needs and yearns to find a better way of life for me. Occasionally lymphatic massage will help with my legs that are filled with lymph edema to the point of turning red, black, purple.....I too have a lymph edema pump that I have to use on my legs to try to pump the fluid out of them. Sometimes I can pump for 30 minutes to only have the fluid return and raise it's ugly head again in a matter of l5 minutes. I get occasional palpitations in my heart when doing this, I guess it's the fluid overload that my heart must bear. Diuretics won't help one bit, if anything that cause more problems with the neurogenic bladder. Just think of ever bodily function that ones has and arachnoiditis affects it in one way or another.

I absolutely hate this way of life. I hate adhesive arachnoiditis, it has forever changed me. I was forced into permanent disability, drawing Social Security which is yet another story and too nightmare in and of itself. I yearn for some new kind of miracle medicine that is going to help me. It disgusts me to think that normal everyday people are "given" this life changing sentence to arachnoiditis of which has no cure, and virtually no treatment modalities unless it's pain management. The United States Government is responsible, at least in the US, so I see it. They are "giving" people arachnoiditis everyday since they will not ban the use of certain myelographic dyes and too depo medrol of which is used in epidural steroid injections. The depo medrol carries a strong statement from its manufacturer. Both of these drugs are causative agents of arachnoiditis. My wish is that someday MAKE somebody listen than can and will do something. My letters to Donna Shalala, the Health Secretary, The Food and Drug Administration and the National Institute of Health that falls under her leadership, Congressman, Senators, etc.. have thus far fallen on deaf ears. I continue in my fight to bring about awareness since there are many within the medical field that don't have a clue what arachnoiditis is. How can they treat us, if they don't know what this even is. It is a travesty, to think that this is happening in this world that is so civilized and has so many medical advancements. For another to be added to the ranks of a victim of arachnoiditis is absurd, it shouldn't be this way. The individual Governments are allowing this to be and it is clearly MURDER, murder, killing of the individual to the point that they no longer can function the way that they used to be. Our lives are ruined forever from the time of diagnosis there is no turning back, we will never be the same. Something as simple as walking across a room can prove to be challenging, to say the least. I hope that someday, somebody some where will listen to our cried and pleads for help. We are so deserving. At this very moment on the National Institute of Health's web site, dealing with arachnoiditis, it states that there is ongoing research into this. This is WRONG,, I called concerning this a couple of months ago, trying to get into a clinical trial or something that would help me, currently there is No research being done anywhere in the US on arachnoiditis. Well why does it say it, if it doesn't exist? Another question for Donna Shalala and her office.

We the sufferers of "A", in American anyway, thought we might have a fighting chance with the placement of a bill into Congress in 1998. H.R.738 was introduced by Congressman James Traficant from Ohio. It called for banning certain myelographic dyes and depo-medrol known causative agents of arachnoiditis. It also called for money to help people that suffer from arachnoiditis through research to find a better way of life for us. However, since it fell dead in committee, Mr. Traficant and/or his office refuse to talk about it anymore. This was his second attempt in trying to help find a cure, or at least a better way of life for arachnoiditis victims. I was instrumental in getting all the representatives from my State of North Carolina to cosponsor the bill with Congressman Traficant. I contacted them, told them of my situation and they agreed to help all they could. Then the bill never makes it out of committee, it's left there to die, just as we are left, to die at the hands of this killer of life, the life that we once knew and loved.

I hope that this partial writing of my story concerning adhesive arachnoiditis has helped you in some way. My arachnoiditis has spread to the point of the later stages which is called adhesive arachnoiditis. Please know that I will help you, whoever you are, where ever you are, I will try to help you just as I have done for so many different ones.

A goal in my life that I still need to attain is to bring about awareness of this, not so rare disorder, and have it dealt with medically. Arachnoiditis is listing as a disorder in the Rare Disorder Registry. Until we can educate persons about arachnoiditis and its causative agents, we will get no where. Still today, people are given the medications that have caused me to live like I do, it is incurable!! When are they going to wake up and realize that they have got to do something about it.

After dealing with this situation, and trying and failing at many attempts to bring about awareness, it is almost like there are companies and agencies out there fighting against us. These types of procedures where these known causative agents are used bring in extremely large revenues for the person doing them. The medical industry has cried wolf long enough....they say we didn't know...it's not that they didn't know, they didn't want to know. Yes, they do know and anybody with the least bit of common sense knows that elements similar to antifreeze are and would be extremely harmful to neural tissue or any tissue for that matter.

Try the experiment sometimes, place depo in a styrofoam cup and watch as it dissolves!!!! No wonder we will never get better!!!

I'll say one possible solution is to give all the doctors that continue to want to use these treatment modalities, give it to them first and wait a couple of weeks and see what happens, first on them since after all they all say that they are so safe. My bet would be that when some of these persons, doctors namely, their life forever changed, they would then listen and stop turning their deaf ears into us.

Dr. Charles Burton has tried for a number of years to bring about the issues of these medications. It has always been brushed aside and given instead. It's time for a change. Some of the older myelographic dyes were oil based, they are no longer to be used, anywhere, finally banned by the governments. The newer ones, the so called safe ones, the water soluble ones, such as the one that was used on me, they cause arachnoiditis just as the oil based ones did.

It's now a proven fact beyond a reasonable doubt.

In fact UpJohn, one of the makers of Depo-Medrol has written inside the insert that comes packaged with the medication....the use of depo medrol in and around neural tissue is toxic.....The epidural space is around neural tissue. and it is doing what UpJohn says, it is proving to be toxic.

Just look at us, we will never ever be the same, only have to look forward to a continued life with only increasing pain and the spreading of arachnoiditis. It has been said that arachnoiditis cuts approximately 12 years off of ones life and can lead to paralysis. It too has been said to cause blindness and memory problems. It too has been compared to cancer and its devastating effects of pain. However it is also mentioned that it differs from cancer due to the fact that it doesn't kill the person, instead it allows a life time of constant pain instead.

I want it stopped in my life time. I don't want my daughter, Whitney, whose life as well has been forever changed by all of this, I don't want it to be a mere thought that she could possibly get "A". I would not wish this on anyone I know, not even my worst enemy, it consumes ones life with forever pain filled minutes that turn to days that turn to months that turn to years, and years and years. I Don't want anybody else to ever have to suffer as I do every second of my life. I want Nurses to continue to do their jobs and love them and not be faced with the issues that I have had to face. I want others to continue to be able to do their jobs and not be afflicted as I have and caused to have to live a life full of misery and never-ending pain.

I don't want anybody of any profession to know what this pain is all about, it's horrible, yet continues. Why won't people listen to what's being said? Will you please get involved in our fight for awareness? Where does justice lie? Is it our Government, Is it the Drug Manufacturers, Is it the Doctor that continues to use it long after its posted warnings? Where does the ultimate responsibility for all of this turn? Will you help to provide us a means of research that will hopefully help our lives to be transformed back from what is now to something that is not full of pain and suffering? I pray that you will, for you have thousands and thousands of people that are counting on you to help.

Without the help that we need, through research and awareness, we are left in our little world filled with the pains and problems that only arachnoiditis causes. It continues to cause problems everyday. Help every person in this entire World, none of us are giving the opportunity to be exempt from what it can and does cause. Please we all, every person in every portion of the world that has this, we need your help. After all, we didn't ask for it, we were given it instead. If only the medications were known about truthfully and explained fully, then this would not have happened.

Will you please help us to make this known and too having something done about it. I beg of you, please help me and the countless others that together suffers so from the needless pain that this very unnecessary, painful, life changing disorder has caused....If you don't who will? We need help NOW!!!!! Tomorrow may be too late, especially for the ones that are to the point in their disease, they are forever consumed by the pain of which sometimes leads to suicide from this life that hold in it's further even more of the same pain and suffering. Please, Please help us!!! We are counting on YOU!!!! I hope and pray to Jesus Christ my Savior and Master that you will never know of the pain that I know. Please give us back our lives that we once had, we are human beings being tortured by this insidious, unnecessary, painful, life changing, horrible disorder called ARACHNOIDITIS. PLEASE HELP US!!!!!!! My life and the lives of countless others are depending on you to help us spread the awareness of arachnoiditis and too hopefully get the research that we all are so in desperate need of. Thank you for taking the time to read what my life has been changed to since it was introduced to Myelograms and Epidural Steroid Injections. Just remember it doesn't have to be this way!!