Life With Arachnoiditis Co-founder, Karen Kovacik Early, believes Life With Arachnoiditis must be approached with an attitude of hope. She knows, first-hand, that it is a daily struggle and that some days are easier than others. When I first discovered I had arachnoiditis, Karen, a complete stranger to me at the time, was one of the few people who took the time to help me figure out what was happening, and more importantly, helped me to find the courage to discover my own way to have a Life with arachnoiditis stabbing its way right through the center. Because living is truly about so much more than survival, I will be eternally thankful for her support, assistance, and guidance during that very difficult time.
This is her Arachnoiditis Survivor Story as posted on the Life With Arachnoiditis Website.
Shared here with her generous and open-minded consent; she is the next recipient of
Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America.
I am looking forward to doing her portrait. ~slk
Hi there! I’m Karen. Friends call me KK, Smiley, Curly, Dances with Deer and now Dances with Wahoo! My claim to fame is my sense of humor even in the face of uncertainties. After all, isn’t life uncertain? Isn’t every day a gift? Isn’t that why today is called the “present” … because it is a “gift?” I’ve been up, down, and I’ve been blessed beyond measure as I have touched the face of this illness many times escaping relatively unharmed. I have hope and faith in knowing we will find answers for those suffering much worse than I have ever been.
Let me be brief with my history. At age 12, I had a serious car accident in which I was thrown through the windshield and back into the car. Transfused with 32 (yes, 32) units of blood and suffered a cardiac arrest. In the 60’s, people did not live through that level of trauma. I was blessed. At age 21, I had my first spinal fusion: L4-L5-S1 and did great until a car accident in 1980. They found broken rods in 1981 and they fused L4-L5-S1 and removed instrumentation. That surgery was not successful, however, I thrived through 23 years running 5K’s, jogging daily, swimming and being as active as possible until November 2003. Let me also add I had an undiagnosed neck fracture resulting in severe spinal stenosis at C5-C6 which was repaired in 2001, coming out of surgery with less pain than when I went into surgery. In November 2003, I developed CES (cauda equina syndrome) and had emergency surgery on a Saturday. Surgery lasted 6.5 hours when it was anticipated it would take 3 hours. They found a real mess. L3-L4-L5-S1 was cleaned up with my surgeon carefully removing scar tissue scattered throughout my spinal canal with bone fragments encapsulated inside. He then fused and inserted 2 state-of-the-art spacers plus instrumented with rods and screws from L3-S1. I recovered beautifully although I had to learn to walk unaided and learn to balance again which I did from the morning following surgery. In June 2006, I fell down a flight of stairs without realizing I was injured. By October 2006, I was experiencing another round of more serious CES. In November 2006, I underwent a fusion revision adding L2 to L3-L4-L5-S1. Another spacer was added at L2-3. L2 to S1 was reinstrumented with new rods leaving screws intact from L3-S1 adding new screws at L2. It was during this time we believe a nick in the dura may have occurred causing arachnoiditis, and/or exacerbating, existing arachnoiditis. Let me give credit where it is due: my CES was twice successfully resolved by my highly skilled surgeon, George Frey, MD, Colorado Comprehensive Spine Institute.
Some months following the last surgery, there seemed to be no diagnosis found for new pain and neurological issues. I had a sense there was more to the situation and sought out another opinion on my own across the state at Durango Spine. Lance Hamlin, PA to Dr. Youssef, identified the arachnoiditis in under 2 minutes of MRI review and explained it to me. At that time, a spinal stimulator was mentioned as a possible option. Instead, I opted for physical therapy which helped immensely. Then I started researching in an effort to find answers. Since November 2008 I have been in experimental treatment which is proving to be highly successful for me. It is my firm belief my arachnoiditis is not progressing. It is anticipated that I will remain in treatment indefinitely. MRI follow up is planned to be able to quantitatively document my progress sometime around the three year mark.
A natural approach to my Arachnoiditis continues. My progress from November 2008 to present is nothing short of a miracle. My current IV therapy is not a formal clinical trial rather a natural approach to treatment overseen by my physician/researcher (an ACAM provider and integrative medicine physician). I do NOT recommend anyone attempt to duplicate this therapy without the guidance of your doctor. I’m the first one to admit some of our efforts have made me ill while other efforts have been stellar performers.
I’ve learned the “impossible just takes longer!” With all my heart, I hope we are going to be able to “document” a reduction in the inflammatory disease process we believe may be involved with Arachnoiditis.
My natural therapy began November 2008 when I was in extreme pain and having difficulty walking and balancing. June 2009 I was able to walk 4.4 miles four to six times a week. Other activities include mountain biking, snow skiing, whitewater paddling, snorkeling, fishing, hiking, swimming, boating, and more. I traveled to the Mexico beach in February 2009 and spent most of April 2009 in South Florida and the Florida Keys, fishing and snorkeling. My pain level is decreasing every day. Leg and nerve pain is almost non existent and my back no longer aches every second. My regularly scheduled pain medications were reduced to ZERO as of May 25, 2009. I am having the time of my life.
My IV therapy consists of high dose vitamin C and magnesium given intravenously ideally at least once a week. We are detoxifying with high dose vitamin E, high dose cholecalciferol (vitamin D3), high dose omega-3-acid ethyl esters and Nattokinase. There are other items included in my treatment which seem helpful. We would hope to be able to demonstrate reduction of the scar tissue within a few years via high resolution MRI.
For those of you suffering from Arachnoiditis, may I suggest as mandatory reading: Anatomy of an Illness by Norman Cousins. There is a significant psychological component to health and wellness. Norman Cousins outlines his true story written after his diagnosis with an incurable terminal illness. Mr. Cousins was able to return himself to an acceptable quality of life utilizing high dose vitamin C therapy, laughter and faith. Each of us has a duty to utilize faith in an effort to improve our own situation. I believe faith is involved with the placebo effect that has been measured in past medical studies. You MUST read Mr. Cousins’ book …. the foundation of my fight for life was formulated from this book.
Please also refer to the study online published by the British Journal of Radiology found at http://bjr.birjournals.org/cgi/content/full/77/922/885 for a very enlightening study on epidural fibrosis.
My surgical history for your reference:
1974 – Fusion L4-S1 with Harrington Rods & bone graft
1981 – Broken rods, refuse L4-S1, remove rods, (failed)
03/01 – Fusion C5/6, titanium plate, bone graft
11-03 – Fusion L3-S1, rods, bone graft & allograft, 2 spacers (CES symptoms, emergency surgery)11/06 – Fusion L2-S1, rods, allograft, additional spacer, new rods/old screws (CES symptoms)
06/08 – Recurring CES, hospitalization, countless MRI’s, CT scans, more.
09-10/08 – Arachnoiditis L3/L5 diagnosed by different provider, self referred (turns out MRI records review shows scarring present as early as the middle of 2006, so diagnosis was a long time in coming)
11/08 – Started experimental therapy including IV therapy, nattokinnase, omega 3, more
03/10 – New impingement at C3/4 and C4/5
Under no circumstances should anyone interpret my story as medical advice nor employ any attempts at this therapy without a doctor supervision. My very experimental therapy, as outlined above, is not detailed in an attempt to prevent anyone from attempting treatment without a professional. Should you desire more information, please have your physician email me and I will be happy to refer your doctor to my doctor.
Again, my love to you all. I am here for you. I do not represent my treatment as a cure for you … it has worked for me. Karen – Email firstname.lastname@example.org
|This is “My Journey” – This write up is not medical advice nor does it represent any endorsement by LWA. Information represents my “personal journey” and is written in hopes of encouraging you to seek out ALL avenues of treatment.
My Decision to “Stand up and FIGHT” – Prior to diagnosis I was experiencing CES symptoms, nerve pain and a host of other symptoms. When diagnosed in 2008, I was devastated. Then I decided, ” I’m not a quitter. I’m going to STAND UP AND FIGHT!” I decided to pull out all the stops and fight like I’ve never fought before. **Attitude is everything**
|January 2009-June 2009: January 2009, I was still taking 300+ mg Demerol a day. As of May 25, 2009, my Demerol intake is zero. January 2009, I took 30mg-60mg diazepam per day. As of June 5, 2009, I do not take diazepam (dalium was prescribed daily from 1997 for severe muscle spasms). January 2009-March 2009 I was able to go snow skiing, hiking, fishing, snorkeling, boating, beachcombing and traveling. June 18, 2009 I achieved my goal of walking 6.0 miles WITHOUT pain medication. Nerve pain has gone from 24/7 to a few times a month. I rarely have serious pain. This sounds outrageous, but it is my path. I am healthier than many 30 year olds. I am 57 years old and I have Arachnoiditis.
Life with Arachnoiditis is a not-for-profit group open to EVERYONE. Our mission is to provide a hope-filled environment highlighting information, education and research. We also offer one-on-one communication with others affected by Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome and other related spinal disorders.
Mission Statement by: Jon McHann, Grace Farm – Manchester, TN