Monthly Archives: March 2015

Together We Change Tomorrow ~ Karen’s Survivor Story

Survivors' Stories, , , , , ,
Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow #2
Together We Fight to Change Tomorrow #2

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 kkovacik12@netzero.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.

 LWA Mission Statement

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

About Spinal Arachnoiditis

About Arachnoiditis
Artist's Rendering of Spinal Arachnoiditis
Artist’s Rendering of Spinal Arachnoiditis

[This post is for resource and informational purposes only and is NOT intended as medical advice or guidance. All visitors are advised to consult a trustworthy physician prior to making any assumptions about prognosis, diagnosis, or changes in Arachnoiditis care or treatment.] 

Arachnoiditis is a spinal cord injury  resulting from inflammation in the arachnoid layer of the spinal canal which results in the clumping or sticking of nerve roots inside the spinal fluid. The nerves adhere together resulting in multiple diverse neurological consequences.

Causes: Neurotoxins in spinal injections (i.e. Epidural Steriod Injection w/ Depo-Medrol, methylprednisolone, Kenalog, and spinal anesthesia ~single injection AND extended use catheters w/ 5% lidocaine, 2.5% lidocaine, and other drugs not approved by the FDA for spinal use but used off label for this purpose; as well as other intraspinal drugs such as amphotericin B and methotrexate Chemonucleosis with hymopapain

Multiple Lumbar Punctures (spinal tap, epidural blood patch, spinal and epidural anesthesia) Infection (e.g. Meningitis ~viral, chemical, bacterial, fungal)

Spinal Surgery, Subarachnoid Heamorrhage Multiple Lumbar Punctures,Trauma (to the spine), Spinal Stenosis (congenital/degenerative),Chronic Disc Prolapse,Degenerative Disc Disease, Myelographic Dyes (Especially Oil Based such as Myodil(pantopaque)

“Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia…Symptoms of spinal arachnoiditis occurred 6 months after a single caudal block in (A 60-year-old woman who had received a single caudal block 6 months before symptom onset.)…Clinicians should be aware of this possible delayed complication.” ~Delayed occurrence of spinal arachnoiditis following a caudal block J Spinal Cord Med. 2011 Nov; 34(6): 616–619 Full Article at The Journal of Spinal Cord Medicine.

“Arachnoiditis can occur after spinal injection of local anesthetic solution, but is also known to occur after intrathecal steroid injection.[214-217] Causes of arachnoiditis include infection, myelograms from oil-based dyes, blood in the intrathecal space, neuroirritant, neurotoxic or neurolytic substances, surgical interventions in the spine, intrathecal corticosteroids, and trauma. In regard to spinal anesthesia, arachnoiditis has resulted from traumatic dural puncture, local anesthetics, detergents, antiseptics and other substances unintentionally injected into the spinal canal.[218]” ~See Complications described by  The New York School of Regional Anesthesia 

SYMPTOMS INCLUDE (but are not limited to)  Intractable pain, muscle weakness, difficulty swallowing, Sleep deprivation, Muscle wasting,Joint stiffness,Reduced activity/immobility, distortions of body size perception (similar to those felt in the lips/face after dental anesthetic), tingling and numbness, loss of sense of limb position, dizziness, loss of balance, Tingling, numbness, or weakness in the legs or arms, sometimes accompanied by restrictive neck pain, Profuse sweating,  Bizarre sensations such as insects crawling on the skin or water trickling down the leg, Severe shooting pain (which some liken to an electric shock sensation), Positional, often severe, headaches as a result of obstruction to the flow & rotation of cerebrospinal fluid (CSF), vomiting,Muscle cramps, spasms, and uncontrollable twitching, Loss of coordination (ataxia), Bladder, bowel, and/or sexual dysfunction, Extreme sensitivity to climate and temperature changes, and/or to noise and/or to bright light, blurred vision, buzzing/ringing/whistling/hissing/pulsing in the ears with possible heightened sensitivity to external sounds (hyperacusis) ~ the combination and extent of the symptoms varies related to spinal region involved.

CONSEQUENCES/OUTCOMES CONFRONTED AT THE ART FOR ARACHNOIDITIS PROJECT unemployability, social isolation, financial struggle, Low self-esteem/low mood, clinical depression

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“CHEMICALLY-INDUCED ARACHNOIDITIS (CIA) Vs MECHANICALLY INDUCED ARACHNOIDITIS (MIA) Chemically-induced arachnoiditis tends to be more diffuse and cause more florid, systemic problems than mechanically-induced arachnoiditis, which is usually more localised and causes the expected neurological problems associated with pathology at the affected spinal level. However, most patients will have some degree of both subtypes. There are a few who have purely MIA and a somewhat greater number who have arachnoiditis after chemical insult, without a history of trauma or surgery (or indeed a significant mechanical factor). Chemically induced arachnoiditis (CIA) is essentially a toxic condition, which seems to involve a chronically-hypersensitised CNS, with substantial autonomic effects and centrally-originating pain.” ~ The Adhesive Arachnoiditis Syndrome, Sarah Andrea Jones Smith MB, BS October 2003

Suspecting and Diagnosing Arachnoiditis ~A review of the symptoms noted in a group of patients with arachnoiditis presents an analysis of clinical observations of this disease.  By J. Antonio Aldrete, MD, MS

Arachnoiditis Part 1: Clinical Description ~ “Arachnoiditis is a rare, but extremely debilitating, chronic pain condition caused by injury to the arachnoid layer of the spinal cord. The goal of treatment is to improve a patient’s function and quality of life by alleviating (but not eliminating) symptoms, especially pain.” By Forest Tennant, MD, DrPH

More at The National Organization for Rare Disorders (NORD) web site

TREATMENT There is no “cure” for arachnoiditis. Survivors and Care Providers focus on coping via Holistic and Pharmaceutical pain management modalities (invasive spinal procedures/injections are contraindicated for patients with arachnoiditis), cognitive behavioral treatment (CBT), Experimental Treatments, Complementary and Alternative Medicine

Patient Self-Help at Veract Intractable Pain Clinic “They are presented here as a public service. I hope you find something to help in these guidelines for Intractable Pain Patients.”~Forest Tennant M.D., Dr. P.H.

INSURANCE CLASSIFICATION 

More RESOURCES (Please share additional resources and information in the comments. These will be added to the list.)

Delayed occurrence of spinal arachnoiditis following a caudal block  J Spinal Cord Med. 2011 Nov; 34(6): 616–619. “Context :Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia.” 

Cauda equina syndrome following an uneventful spinal anaesthesia, Indian Journal of Anesthesia. 2010 Jan-Feb; 54(1): 68–69

Cauda Equina Syndrome 

Cauda equina syndrome after epidural steroid injection: a case report. 2006 Jul-Aug;29(6):492.e1-3. at Pub. Med. Gov

Fibromyalgia and arachnoiditis presented as an acute spinal disorder ~ Surgical  Neurology  International. 2014; 5: 151.Published online 2014 Oct 21. doi:  10.4103/2152-7806.143364

The Burton Report 

Life With Arachnoiditis

Arachnoiditis USA

Join the Art For Arachnoiditis Project. WE aren’t finished yet.

Awareness Art

Our Mission
Our Mission. [The Art for Arachnoiditis Project is a fiscally sponsored project of The New York Foundation for the Arts]
Our first Art Exhibit will feature Art By Spinal Arachnoiditis Survivors. Although the entry deadline has passed for work to be included in this April 2015 exhibit, it is NEVER too late to submit your Survivor Story and/or art to be included in the Art By Surivivors collection here. All entries received after the Feb. 15, 2015 deadline our reserved for consideration in future exhibits.

2014-2015 CATEGORIES: Arachnoiditis Survivor Portrait Project, Arachnoiditis In Real Life (digital photo series), Art By Survivors (see the slide show on right side of our Home page) and Art For Sale By Survivors. Survivors’ Stories are still being accepted for use on this website and for consideration in future project publications.  See the 2014-2015 Categories Registration Form for additional details and instructions.

We continue to receive and accept entries for the Album of the Survivors and/or the Map of Survivors.

Map of Spinal Arachnoiditis Survivors Registered at the Art For Arachnoiditis Project (3.17.15)
Map of Spinal Arachnoiditis Survivors Registered at the Art For Arachnoiditis Project (190+ registered as of 3.17.15)

Not sure what kind of art to make? Although you are never under any obligation to share the results, Healing Art Activities are a good way to begin making art. It would be an honor to share your process and outcomes with the world.

We are especially interested in seeing what you make of Healing Art Activity #20.

ANOTHER EASY WAY TO PARTICIPATE:

WE want your empty prescription bottles
WE want your empty orange and white prescription bottles

Do you have a bunch of these and don’t know what to do with them? Want to support the project but not sure how to contribute? Send your empty, clean (ORANGE w/ WHITE LIDS) script bottles to the Art For Arachnoiditis project at Sheilalynnk Art Studio with a slip of paper inside the bottle saying, “I am an Arachnoiditis Survivor” or “End Arachnoiditis Now”(if you do not have arachnoiditis). We will re-purpose them into art. [PLEASE BE SURE TO REMOVE ALL LABELS/NAMES/ID info]  

These bottles will be utilized in the completion of a NEW Arachnoiditis Awareness Art project being assembled at SheilaLynnK Art Studio for display in the NEXT exhibit. [Date, location, and CALL FOR ENTRIES TBA]

 

THIS IS JUST THE BEGINNING. HOPE YOU WILL JOIN US ON THIS JOURNEY.

 

UPDATE : THE PRESCRIPTION BOTTLES WERE USED IN THE PUBLIC EXHIBITION INTERACTIVE INSTALLATION TITLED: “Limited Liberty”

Watch the video

 

The Art For Arachnoiditis Project fiscally sponsored by NYFA

Funding for Art For Arachnoiditis,
The Art For Arachnoiditis Project is a SheilaLynnK Art Studio charitable endeavor and Fiscally Sponsored project of the New York Foundation for the Arts
The Art For Arachnoiditis Project is a SheilaLynnK Art Studio charitable endeavor and Fiscally Sponsored project of the New York Foundation for the Arts

Tax-deductible contributions may be made by credit card online at NYFA . All contributions over $2500 must be accompanied by a contribution letter.

Individuals can also make a tax-deductible contribution to the Art For Arachnoiditis Project by sending a check payable to: The New York Foundation For the Arts        Memo: The Art For Arachnoiditis Project

Mail to SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895. This check will then be deposited to the project via our NYFA account.

Arachnoiditis Survivors are NOT in any way obligated or expected to provide or secure funding for the Art For Arachnoiditis Project. This project has been developed FOR fellow arachnoiditis survivors. Please do not solicit them for funding. However, feel free to share these details with any other advocate, individual, or business entity who may be interested in supporting the Art For Arachnoiditis Project.

Our first exhibit will be open to the public April 18-May 8, 2015, at the Fountain Arts Center, Belmont, NY. Opening Reception April 18th 1-4pm. Over 70 entries of art and photos by Survivors were received. Approximately 55 pieces of Artwork by Survivors will be displayed at the exhibit.

Also at the exhibit:

SIX Survivor Portraits created during  Arachnoiditis Survivor:A Portrait of Resilience Against Patient Harm  Technology permitting, videos of these portraits in progress will also be presented during the opening reception.

Map of Survivors ~ over 190 locations around the world registered by Arachnoiditis Survivors via the Art For Arachnoiditis Project  marked on a world map with Arachnoiditis Awareness map pins.

Digital Collage(s) of selfie images contributed to the Album of the Survivors

Honesty and Hope (a.k.a. No Pain, No Gain)

Still Standing shadow box installation  ~Sheila’s first art for arachnoiditis project

The Ostrich cot will be available for Reasonable Accommodations practice and demonstration purposes.

MANY THANKS TO OUR SPONSORS!!!

My Story: A New Mother’s Epidural Gone Wrong

Survivors' Stories, ,

July 18th, 2014 by Michelle Babcock

New Mother and Baby

New Mother and Baby

In 2012, at the age of 32, I became pregnant with my first and only baby, a boy, due October 22nd of that year.

At my 40-week doctor’s appointment, my obstetrician measured my baby at 8.5 lbs and recommended an induction for Thursday evening of the same week, despite my wishes for a naturally-induced labor, and despite the fact that I had been battling a terrible cold. I went against my gut and trusted her judgment.

Fast forward to Thursday at 9pm.

Just before starting the Pitocin drip which would induce my labor, I was given the “informed” consent form for the epidural. Complications such as “a sudden drop in blood pressure” and “a spinal headache” were listed as risks. “Nerve damage” was listed as a “very rare complication.”

Adhesive arachnoiditis, the strangely-named, dreadful, incurable, painful, oftentimes progressive DISEASE with which I would later be diagnosed, was nowhere to be seen on the form.

After reading through the consent form, I asked the nurse what was meant by “nerve damage.” She explained that a nerve could be nicked and that I might feel a numb spot for a little while.

I recalled my birthing class, where the epidural was sold as “the safest method of pain relief for both mother and baby” – a procedure that finally ended the inhumane suffering that women used to have to endure during childbirth.

I signed the form “just in case” and we started the IV, which began pumping my body full of Pitocin.

For hours, I fought the progressively stronger contractions, my eyes closing between them, begging for sleep. Late the next morning, the contractions became unbearable. Not realizing at the time that I could have asked for the Pitocin to be turned down, I finally gave in and asked for the epidural. No other methods of pain relief were offered to me.

My potentially life-threatening wish was immediately granted. When Dr. K, the anesthesiologist, came in, I could barely breathe. He asked me if I had any questions. Even if I did, it was impossible to speak in my state.

“NO!” I screamed. “Well,” he said as he prepared my back for the procedure, “I have done over six thousand of these, and I have only witnessed two spinal headaches.   They’re not fun, but they go away almost instantly with a blood patch.”

I felt more reassured. As Dr. K advanced the needle, the contractions continued, hard, fast, and with just seconds in between. He then threaded the catheter through the needle and administered the medication. I immediately felt pain on my left side, and he asked me where I felt the effects. I answered that I felt it mostly on the left side.

He then either reinserted the needle or repositioned the catheter. It remains a mystery, as neither was noted in the medical report.

Oddly enough, immediately after the anesthesiologist administered my epidural, the nurse rushed to turn down the Pitocin drip, remarking how fast the contractions were coming.   Why she didn’t do that before I begged for the epidural I will never know.

Relieved, I finally slept for a couple of hours.

My baby came at around 7 in the evening (at 7 lbs. 13 oz. Not the Goliath of a baby my OB had described).

I was elated to meet my beautiful son. However, I became very worried at how weak my legs were when I finally stood up. I continued to voice my concern about the weakness and numbness in my legs for the next two and a half days, but the nurses kept telling me it was normal and that the epidural just needed some time to wear off.

The anesthesiologist never came back to check on me during my hospital stay despite my complaints.

On Sunday, my husband, my mom and I left the hospital with our newborn in the back seat. I still felt like I had a mini epidural. Here I was with a new baby, and all I could think about was why I felt like I was slowly going paralyzed.

Every time I sat down, my lower back would pulsate in excruciating pain that would begin in my spine and wrap around to my abdomen. My legs felt like jelly, as though they would collapse under me at any moment. I felt strange muscle twitches and an electric-like buzzing, pins-and-needles sensation in my legs. I could barely walk around the block. It was the first time in my life that I truly wanted to die.

With the neuropathy spreading to my arms, I wound up in the emergency room twice during my baby’s first few days on earth. During that precious time that most new mothers spend bonding with their newborns, I was in the ER pumping breast milk to feed my baby who was being cared for by my husband and mom at home. It broke my heart that I could barely hold him, let alone bond with him during this time.

I was told that my problems could not be from the epidural, as all tests and MRI’s came back normal, and I was sent home.

Oh my God, I thought. How could I be fine one day, go in to give birth the next, and come out like this?! How could it NOT be from the epidural? No one wanted to talk about the elephant in the room.

Weeks passed. I desperately sought the opinion of several other neurologists, all of whom avoided discussing the epidural and, after running numerous blood tests that came back normal, dismissed my symptoms as psychosomatic; a result of postpartum depression and anxiety. I was prescribed anti-depressants and sent home again and again with no mention of the epidural.

Months passed. Every day was filled with pain, weakness, and bizarre neuropathic symptoms. Burning pain one minute, ice-cold sensations the next, worms crawling under my skin, muscle spasms like a human popcorn machine. I continued to beg God to take me. Meanwhile, I had a baby to care for. I was a mother.

I put on a fake smile for months, as I did not want my baby to sense my pain and agony. I relied on my husband to hold the household together. My rock, he did all of the chores and cooked all of the dinners. I owe him a lot.

Every day, I used every ounce of my energy to care for my baby, using nap times to obsessively search the Internet for answers. I finally came across a page that described my symptoms perfectly. The disease was called adhesive arachnoiditis. A book had been written about it called “The Silent Epidemic,” since many doctors fail to diagnose it out of ignorance or fear, hence the code of silence.

I found the author of this book, Dr. Antonio Aldrete, one of the world’s premier experts on the disease, and sent my medical records and MRI’s to him for review. Shortly thereafter, he confirmed the diagnosis of adhesive arachnoiditis over the phone. Nerve root clumping was evident on my MRI’s. I was both devastated and relieved. Finally, I knew what was wrong with me. I was NOT crazy or anxious or just another postpartum depression case.

Then, I was angry. How did the other doctors miss this for so long? Do they not know what it is? Are they hiding it from me?

I have since gone through many treatments for my pain, and I live one day at a time. Because the disease is iatrogenic,(induced inadvertently by a physician or surgeon) little research has been done on arachnoiditis, so there is no specific treatment protocol. The medications I take are largely experimental in nature.

It has been difficult adjusting to life with a spinal disorder. A former avid runner and assistant cross country coach, I now cannot stand or sit for long periods of time without terrible pain. I rely on medications 24/7 in order to function and maintain moderately low pain levels. Unless a cure is discovered, I will likely depend on them for the rest of my life.

Needless to say, the physical challenges are met with equally difficult emotional and social ones. For example, others often mistake me for a healthy person or even a drug seeker, since I look normal on the outside. This can be very humiliating to the afflicted person, and it can be frustrating to friends who can’t understand why you keep canceling plans at the last minute because you’re having a bad pain day.

Just like anyone else, I have fears. Aside from the prospect of my disease progressing, one of my biggest fears is that I will no longer be able to work to help support my family, or that I won’t be able to have another child because of this illness or the meds I have to take. I don’t know if I can go without my meds, or how my spine can support the weight of pregnancy.

What do I want? I want doctors to listen to their patients and honor the oath they took before entering their practices to “first, do no harm.” I want OB’s to stop ordering unnecessary interventions, and to respect the natural process of birthing as much as possible. I want true informed consent well in advance of the procedure when the patient is in his/her right mind, and I want it to be more thorough to cover ALL risks, even if they are deemed “rare,” as many complications resulting from medical procedures are, in reality, not as rare as many medical professionals would have us believe.

In the case of arachnoiditis, since there conveniently exists no reliable system or governing body to report and monitor its occurrence, it is impossible to know how many sufferers are truly out there.

What has become clear is the fact that social media support groups are teeming with a staggering number of arachnoiditis patients, many of whom have suffered for years before finally getting an honest diagnosis. Their stories have yet to be heard and acknowledged by the medical community at large.   It is a disease that has been widely misdiagnosed, underreported, and/or mislabeled as “failed back surgery syndrome” or fibromyalgia, among many other disorders.

It is shocking how many doctors – the very doctors who administer spinal procedures – have never even heard of arachnoiditis. And it is sad to think how many people are out there who are wondering what is wrong with them, not to mention how many new mothers with legitimate medical problems are conveniently written off as postpartum depression head cases.

In short, I just want the truth to come out!”

Originally published in the National Pain Report, Michelle submitted her story for use at the Art For Arachnoiditis Project.

With Reasonable Accommodations offered in her workplace, Michelle was eventually able to return to teaching.

Epidurals and spinal injections for surgical anesthesia and pain management are a known cause of Spinal Adhesive Arachnoiditis and Caude Equina Syndrome. Find out more about the Risks of Spinal Injections and the Value of Informed Consent.

Have you had any additional unexpected and/or unexplained medical after receiving a spinal injection? You are welcome to share your story in the the comments below.

RESOURCES:

Delayed occurrence of spinal arachnoiditis following a caudal block  J Spinal Cord Med. 2011 Nov; 34(6): 616–619. “Context :Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia.” 

Cauda equina syndrome following an uneventful spinal anaesthesia, Indian Journal of Anesthesia. 2010 Jan-Feb; 54(1): 68–69

Cauda Equina Syndrome 

Cauda equina syndrome after epidural steroid injection: a case report. 2006 Jul-Aug;29(6):492.e1-3. at Pub. Med. Gov

Starting March with a Bloggy Project Update from Sheila

Events, , , , , , , ,
Art For Arachnoiditis Project Admin Team (photo by my grandson)
Art For Arachnoiditis Project Admin Team (photo by my grandson)

Things here have been REALLY busy in the Art For Arachnoiditis Project Operations Office.

The Fiscal Sponsorship contract with the New York Foundation for the Arts (NYFA) has been finalized. Soon our project page will be live there. I will share that link as soon as I have it.

To make it easier for Arachnoiditis Survivors to find us, The Art For Arachnoiditis Project has now been upgraded to a VIP Listing at The Wellness Universe  Online Directory of Resources to Expand Your Well-Being.

” The Mission at the Wellness Universe: The seven areas of wellness are: Emotional, Environmental, Intellectual, Occupational, Physical, Social & Spiritual. From people offering support, to products that improve the betterment of your life, the environment, animals, awareness and education, we here at The Wellness Universe strive to find the best of those resources and list them in a directory for you.”

VIP Listing at WU #WUVIP
VIP Listing at WU #WUVIP

I have been doing a lot of PR & Prep (lesson plans, creating our Healing Power of Art Presentation, seeking product sponsors, and writing our invitations) for the exhibit opening reception and workshop.

Registered Arachnoiditis Survivors do not have to pay a fee to attend the workshop. Limited space is available. Please be sure to register. Survivors Planning to attend the Exhibit & Opening Reception and/or Workshop, please contact the Studio; to register and let us know any necessary accommodations you may require at the Fountain Arts Center in Belmont, NY.                                                                                         Workshop Registration Deadline: March 20th.

The prints of your entries look amazing!  I have just ordered all of the frames and mat boards. I hope the delivery truck can get here. The snow and slush is STILL coming down!

Don’t forget! I have also been processing your forms and photos so check out the list of  registrations/entries.  My creative spirit was assigned the task of designing the  digital collages for the Arachnoiditis In Real Life digital photo series while my inner clerk was doing project administrative tasks (conquering the bottom line). Did I mention the “Clerk” (at tax time) and the “Creative Spirit” have to share the same brain

With the “Best Book Warrior” ? ….who has been revising and recovering from her own revisions to the publication agenda for the Book Project: Still Standing, Sometimes. She is  determined to make this publication a valuable and reputable resource for Arachnoiditis Survival, Awareness,  and Prevention.

THIS WEEK: Drawing Survivor Portraits will resume between organizing (finding) community volunteers to help paint the Map of the Survivors. As an incentive, volunteers receive B~Arter Bucks from SheilaLynnK Art Studio for participating in the Map-making project. Did you know there are over 186 locations from around the world registered to be displayed on the map so far?

Thanks so much to Linda Funsch! She is putting the Arachnoiditis Awareness ribbon stickers on all of the map flag pins. Each location will have it’s own pin with an Awareness Ribbon. The map is scheduled to be finished in time for display at the exhibit.

TECH UPGRADES ARE HERE! I am patiently waiting for the “Tech Support Crew Chief” to install them.

My own personal aching arachnoiditis entity is not hesitating to add her voice to these proceedings. She attacks at some of the most inopportune moments in the middle of very important tasks. However, I am partially to blame as I have been pushing myself into too much vertical activity (she is very vocal in her objection to this) while waiting for tech upgrades that will allow me to resume doing more of the computer work from a horizontal position. ….did I mention I am also the tech support crew chief at the Art For Arachnoiditis Project?

A Message From the Gravitationally Challenged
A Message From the Gravitationally Challenged TECH Support Team.

In answer to the recent question, “What do you do when you are NOT working on the Art For Arachnoiditis Project?”

My first moving meditation zentangle, ZenFeathers.…

Putting some of My own photography in the Wellsville Art Association Annual Photo Show

Planning SWAN Day Party 2015 at the Belfast Organization for Artists

and on March 6th…starting Muse Moving Music Friday, a virtual gathering to share and enjoy music appreciation via Youtube and other online music sources at SheilaLynnK Art Studio. Happening every other Friday. Anyone can  join us!

and losing an eleven-day game of Scooby-Doo Monopoly!
and losing an eleven-day game of         Scooby-Doo Monopoly with one of my favorite artists!