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.
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.
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 email@example.com
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.
August 2009: I remain free of narcotics and diazepam. Nights are still tough and I have insomnia generated by diazepam withdrawal (diazepam withdrawal is difficult and quite prolonged). I found reducing my hikes from 6 miles to 4.4 miles allows for more hikes. July 2009, I paddled class IV whitewater and paddled a 4 day 75-mile kayak trip on the Green River in Utah sleeping on the river banks for 3 nights! I also flew to Florida for my high school reunion to celebrate with friends.
November 2009 (3rd patient has IV therapy): I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising. I am narcotics free over 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. For a few months now I have had twice weekly IV therapy. Ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water. Almost all leg nerve pain is gone … most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart!. The past few weeks I have crawled into bed at night without pain creeping in after a few minutes. I am so thankful and so very humbled by the progress we’ve made.
January 2010:I am still able to work and play without pain medication. Still taking 3000mg Robaxin per day. I’m also using valerian root for muscle spasms and taking GABA supplements now.The Patricia Kane Protocol was absolutely helpful to me. I’ve found I cannot receive both ascorbic acid/magnesium and the Patricia Kane Protocol the same day. I need at least a day or two between the treatments.
February 2010 (4th patient has IV therapy): This journey has taken me places I never dreamed I would be. Patients from all walks of life have contacted me from all over the world. New friends and new challenges lie ahead. Dear new friendships have been made and I would not have missed these new friends for the world. I’ve been able to meet four patients with Arachnoiditis.
March 2010 (5th patient has IV therapy): An MRI this month revealed some significant impingement at C3/4-C4/5, just above C5/6 fusion done around 2000/2001. I was able to see Lance Hamlin at Spine Colorado in Durango and he is as awesome as ever! I’ve started physical therapy and traction at home in an effort to strengthen my neck. Worst case scenario will be surgery at C3/4-C4/5 which I am going to work to avoid at all costs. Pain medication was required at initial onset for 2 days and has been required several times for extreme pain. I am still battling neck and arm pain as of March 18, 2010 but I appear to be making progress. I’ve just completed a 5 mile hike today and it is my 5th hike this week.
IV therapy continues and remains the mainstay of my treatment. A new patient has again come on board and also had great initial results to two initial treatments. Connie Keeler in Tennessee remains improved and follows a similar course. It’s a long road and there are no “cures,” but remission/improvement seems attainable. This is excellent news.
April 23, 2010: I continue to battle neck issues although the pain is not nearly as severe as in March. Spine Colorado (Durango) continues to track my progress in three week intervals. I am very pleased with Lance Hamlin, the PA at Spine Colorado. If surgery is the ultimate route, I remain confident I will get excellent care. We realize surgery is one of the worst possible risks with Arachnoiditis. Surgery will be considered only after all other options are exhausted. Intermittent pain medication has been used for the neck injury issues (a few times a week) with less than satisfactory results.
This month I traveled to Islamorada in the Florida Keys to visit friends. It required me to miss IV therapy and I went two weeks between IV’s. By the tenth day I was starting to experience pain from Arachnoiditis (I did not take my liposomal vitamin C and glutathione with me as I did in the prior trip). Within 12 hours of IV administration on my return, my back and leg pain again totally disappeared. I wish the IV therapy had the same effect on my neck injury, it does not. I’ve been hiking 3-5 days a week, weather permitting. As much as I wish I could say IV therapy is a “cure,” I feel it is a “roll back” and/or “remission state.” This alone is a Godsend and, for the immediate future, I continue in IV treatment to be able to live a full life.
Last week, another patient was experiencing horrific pain (she was not on IV therapy). She was administered the IV protocol and experienced dramatic improvement in pain levels. The IV therapy continues to demonstrate pain relief in all the patients receiving the same protocol as mine. This is very encouraging. I suspect, in time, this protocol might be considered one of the “mainstay” treatments in helping to squelch the inflammation.
May 06, 2010: Things are back on track. I’m feeling extremely well. The neck issue has subsided, FINALLY. Back up to hiking 5 days a week (weather is finally cooperating a little bit). I have to say, the exercise is not optional… the endorphins really help the pain levels. No narcotics on board and May 25th will mark the ONE YEAR MARK since I’ve been off regularly scheduled pain medications! There were maybe 3 or 4 weeks where I had to have pain meds 2 or 3 times within a given week due to the neck injury in March and April. June 3rd will be a year off diazepam. WOW. Now preparing for Congress in July. It is so exciting to be able to go to the Congress meeting and I can’t wait to share my path. God is good … all the time.
June 14, 2010: What an exciting 6 weeks it has been. Ascorbic IV was ramped up to 60 grams, PK Protocol ramped up to maximum levels, bioidenticals on board, chelation once weekly, liposomal ascorbic and glutathione have been back on board for about a month. I feel GREAT. Robaxin down to 500mg a day.
I don’t think I’ve ever felt as much excitement as I do for the upcoming Congress and our trip to Chambery, France. Packing has begun and I leave June 25 for Knoxville, TN to pick up Connie Keeler. We fly to Paris for four days of fun on June 26, then on to Chambery with the rest of our group on July 1. We are READY!
November 5, 2010: The Congress event was amazing. Transcripts will be available when they are able to be completed, a long and time consuming process. I learned at Congress there is another Arachnoiditis patient that has gotten his life back through a similar process but without IV therapy.
At Congress, I was privileged to meet Dr. Jan-Peter Warnke, the only surgeon in the world performing a particular type of thecaloscopy for Arachnoiditis. On viewing the procedure via video at the Congress, it became clear why it may work for patients with no other options. An Arachnoiditis friend of mine had surgery September 19, 2010 and was “pain free” by mid October. An amazing accomplishment. Another great advancement and hope for the future.
A note on IV therapy: The order of administration of the solutions seems to make a huge difference. In October it was necessary for me to be away for an extended period of time due to a health emergency with my parents. I had treatment in Florida and they administered the PK Protocol before the ascorbic/mag. While side effects were far less, pain relief was also far less. We tried the protocol turned around for 3 treatments …. it does not work well at all for me. I am home and we have reversed the order back to 60 grams ascorbic/4 grams magnesium first, then the PK Protocol last. There are more side effects, yes, but definite difference in pain relief. It may take a few more treatments to gain back the ground I lost.Experimental treatment continues to work for me.
November 30, 2010: My new physician, Dr. Eugene O’Neill, of Rio Grande Hospital Clinic, refuses to read the literature supplied to him on Arachnoiditis on Oct. 19, 2010. Dr. O’Neill is unwilling to learn anything about my disease or the Patricia Kane Protocol. He says he doesn’t have the time and his malpractice insurance won’t cover it. On my last visit on Nov. 30, 2010, I brought Dr. Sarah Fox’ short paper ….a brief Summary about Arachnoiditis for busy physicians. When I told Dr. O’Neill I’d like to briefly discuss this paper so he could understand why I refuse preventative tests (mammograms, pap smears, other preventative tests), he went into a tirade about the PK Protocol, that he would not prescribe pain medication to even one more patient, how a patient sued him for saving his life, how 80% of the local population of patients in Monte Vista, Colorado are seeking narcotics and selling them, and said maybe I should go to Washington to see Ralph Holsworth. Never have I met a physician that cares about his patients less.
December 3, 2010: Received a call from Dr. Ralph Holsworth yesterday. He has located a new provider for me familiar with the PK Protocol and willing to administer the ascorbic/mag IV.
December 2010 – March 2014: It’s been a long time since I updated patients. December 2010 through June 2014 found me in Florida living with my mom and dad on an emergency basis as a court appointed guardian. My dad passed away in January 2011 and mom passed June 2013. During this time frame I found a local practice to continue my IV treatment but have had no real physician guidance for Arachnoiditis.
While in Florida, I joined the VAST senior swim team. Unbelievably, I have competed in local, state and international level swim competitions medalling at all levels! In 2011, I swam two relays with 3 team mates setting two new state records. In 2012, I swam first place at state level in backstroke. I’ve medalled in freestyle, backstroke and breaststroke. Who knew I could swim? The swimming definitely keeps me in shape. AND, IT EMPOWERS ME! When I slip into the pool, I am called by a nickname Coach Gary gave me the first week on the team, “Martini.” I think of Martini like Clark Kent changing in the phone book into Superman. When I change into “Martini,” I tell myself I can do anything, I really do.
New issues have presented themselves. Adjacent segment issues both sides of C5-C6 along with a C7 radiculopathy. Adjacent segment issues at T12/L1. March 2014 was my first lumbar MRI since starting this journey in 2008. It reveals Adhesive Arachnoiditis is still present. The ultimate result of IV treatment seems to be found in keeping the inflammation in check that keeps pain under control most of the time. Structural damage to my spine from repetitive surgeries continues. If I am honest with myself, I have not been overly diligent during this three year time frame to stick to the protocol that best controls pain and symptoms.
WHAT NOW? What happens now is a choice I think. I can crumble under the news and be ultra cautious avoiding too much activity. Or I can strictly follow the protocol and do everything I possibly can to stay active. In the past some of my children have become very angry with me because I chose to do things that “could” result in pain and injury. From where I sit, I have gone through a lot of hell to sit on the sidelines. The very point of extensive surgery was to be able to participate in life. There is no guarantee, not for any of us.
During the past 5 years I have lost multiple friends and patients to the fire of Arachnoiditis and the number seems to be increasing. I think they would be very disappointed if I gave up. I can absolutely see Claudine in my mind’s eye as I swim. In my mind’s eye Claudine is healthy, jumping up and down, clapping and cheering me on from Heaven. I choose to live life to the fullest. I can see Sheila laying down on her artist bed creating art and “showing up” for life each day, videoing her efforts and incredible courage. I choose to show up. I see Terri and so many others fighting the political machine to prevent more Arachnoiditis patients. I choose to cheer them on.
What now? Back to the protocol, back to the pool and bike. I choose activity, courage and to show up. I AM HERE. And I still believe, “Together we change tomorrow.”
Contact and Updates:
To stay updated on my activities, send a friend request on Facebook. Look up Karen Kovacik Early and in your friend request message box, please identify yourself as having read my bio on Life With Arachnoiditis and I will accept your friend request.
Go to www.acam.org to learn more about alternative medicine. I’ve learned the “impossible just takes longer!” I am very close to having my life back … it will be a life long journey I believe.
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