My Story: Arachnoiditis – My New Normal

My Story: Arachnoiditis – My New Normal

Even as I write my story about how an Epidural Steroid Injection (ESI) changed my life, I do so with great difficulty. It is one thing to talk about it but quite another to actually write it down. Reliving the events of the day that took my life down an entirely different path is traumatic. So, I write this on behalf of all those that want their story to be heard but are struggling to know how to start.

On November 1, 2013 I had an ESI for back pain. This day forever changed my life.

Prior to this injection I had received five in the last two years. Each had helped to diminish back pain and got me back on my feet. For this reason, I went blindly into each one, never thinking to ask questions about the drugs being used, the safety of, or the risks involved and more importantly, I was not told.

My family had a cruise planned in December in celebration of my two daughters—one was graduating from high school and the other from college. Rather than wait for an opening in the schedule of the doctor who had performed my last procedure I went with the next doctor available.

I was very anxious that day. I held a pink cross made from ribbon by my Grandmother, an item that brings me comfort. Yet I couldn’t shake this feeling inside telling me not to go through with this. The staff involved in my care were not friendly, no one identified themselves to me. I had to ask the man wearing a red skull bandana who he was. He very rudely replied he was the doctor doing the injection, still had not identified himself by name. In my effort to lighten a heaviness in the air, I asked him if he had any fancy letters behind his name like the previous doctor had. I assumed all doctors doing these injections did, so I had no way of knowing this would irritate him the way it did. I received a one word answer, “No.” He made a comment on the cross I held, “You are going to crumble that thing to pieces the way you are twisting it.” I got the feeling I had offended him on many levels.

Lying on that table, face down, my tears fell to the floor. Every instinct I had told me to get up, don’t go through with this. Embarrassment, and intimidation kept me from listening to my instincts though.

I was put under light sedation and the procedure began. Next thing I knew I woke up screaming out in pain! The doctor had just jammed the needle through my dura, injecting the intrathecal space with Kenalog. I was knocked back out and the next time I woke up I was in pain like I’d never known. My body felt like it was being ripped in half, my body was on fire from the middle of my shoulder blades down to my legs and feet. Deep, pulsating pain, searing, shocking, and stabbing me. Yet very sheepishly I was told this was “normal sometimes.”

After complaining for several hours, being told I was no longer under this physician’s care, if I needed or wanted further attention I would need to go through the ER, I was discharged and went home. This is not the end to this nightmare in poor treatment, lies and cover ups, however, it is where I will leave this part of my story, for now.

Thus beginning my journey with Arachnoiditis, my new normal. The steroid entering into the spinal cord inflamed the arachnoid layer, causing it to stick together or adhere to the nerves and nerve roots. It has no cure, creates severe, chronic and intractable pain and a wide host of bizarre symptoms. It is progressive as scar tissue surrounds the nerve roots, preventing nerves from functioning properly.  Doctor after doctor, one test after the other, and one medication after the next trying to control the pain that was controlling me. It was months before I would know why my body felt like it was trying to destroy me from the inside out. Some wait in wonder for years.

Before this fateful day I was a very active member in the Master Gardeners Association. I would spend hours volunteering my time at our local Demonstration Garden, kept a scrapbook documenting the progress of the garden, and spent many hours in my own yard planting and tending to flowers, all kinds of plants, trees and vegetables. When I wasn’t present in my yard the following spring, it began to suffer; my neighbors knew something was wrong with me. I am a wife, a mother of two beautiful daughters and a grandmother of a now three year old little boy. I have always been very involved with my family, now I have limits as to what I can and cannot do with them. Every time my grandson reaches his arms up for me to pick him up and I can’t is one of the worst feelings.  Not one area of my life has been left untouched by this disease, not one, both physically and emotionally. Trying to reconcile the person I was before and the one I am now is an ongoing process.

I learned too late that Kenalog is not approved by the FDA for epidural use. When I looked up the datasheet for it on the FDA website, I was shocked!  The datasheet specifically states it is “NOT RECOMMENDED” for epidural use. Arachnoiditis is listed as a potential adverse reaction. I was horrified that Kenalog had been injected into my spine, without mention of the either of these facts. I was told that loss of blood was the primary risk involved, and that came from admissions the day of the procedure.

I attended the FDA Advisory Committee Hearing with my Arachnoiditis friends in November 2014 and also learned that there is NO steroid approved by the FDA for epidural use. Physicians (some) continue to put profits ahead of patient health by pushing injections. Patients are NOT given proper consent. As patients we have the right to make informed decisions about our own care. How are we supposed to do this when we are not told all of the risks?

What is my advice? Listen to that still inner voice and be cautious when you seek treatment. Ask questions, research, and read the datasheet on all drugs that you take, including those that are injected. Check to see if they are approved for the use that your doctor is suggesting for treatment. As patients, we need to be better informed consumers. We can no longer blindly trust what (some) doctors say.

Rhonda is a 53 year old woman who lives in Nacogdoches, Texas with her husband Ron Yoder. She is a mother of two and grandmother of two who is permanently disabled and spends her time raising awareness about arachnoiditis and chronic pain.

Authored by: Rhonda Posey

There are 15 comments for this article
  1. Becky at 4:45 am

    Jim, every symptom that you haveexplained are arach related. I also was given an ESI with depo-medrol in which my dura was punctured. That was in 2005 and I have all symptoms you explain. Join a support group in social media, it really does help to know many others suffer from same disease..

  2. Jim T. at 1:19 pm

    I also had a steroid injection, approximately 12 years ago, after multiple back surgeries, the technician that gave the injection (he could not have been a Doctor) had me sit an a gurney and a nurse stood in front of me so I could lean forward and she could support me. The tech had trouble getting the needle into my back stating it was because of all the scar tissue from the previous surgeries so he just jabbed it in real hard then did the injection. I immediately thru up all over the nurse in front of me, they said I turned blue and had worst head ache imaginable, had trouble breathing, the pain was the worse that I have ever felt. The employees at the clinic where I got the injection got scared and had me lay down for a couple of hours on oxygen and were getting ready to call 911, I was able to sit up after acouple of hours so the helped me get to the car and my wife drove me home. It took a couple of years of noneffective pain management before the finally ran a MRI and diagnosed AA. After seeing 10 different doctors (I was civil service) I finally got a great Doctor (Dr. Vert Mooney, RIP) He placed me on disability and finally told me there is nothing that can be done and whatever I do, do not allow any injections or any further surgeries.
    So I have learned to live with it. If that is what you call it. The pain is more than I can take some times, but I am able to handle it, it is the other complications that are hard to take, the night sweats, chills, muscle cramps, the crawling feeling in the legs, inability to stand or sit for periods of time, constantly looking for a rest room, unexplained blurry vision at times, and other problems that I don’t know if they are related.. Don’t allow any spinal injections!!! This is not worth it………..

  3. Gretchen Wagenseller at 11:31 pm

    This burns me up. I don’t have AA but I have fibromyalgia, and when I hear about this incompetence, gross negligence, and total lack of caring amongst medical practitioners, part of me goes ballistic inside. All doctors in training should be well trained in pain management and be required to have continuing training periodically. And the reality, that we continually learn, is that we can’t just put ourselves in the hands of doctors without doing research–it shouldn’t have to be that way–we should be able to trust that they are up on all of the research and really care about their patients–but with enough lessons learned–I know that’s not true, or at least, that kind of trust has to be earned, not assumed. I am going to post this article on our fibromyalgia Facebook page since many people with fibromyalgia have other medical problems, including back pain from non-fibromyalgia causes. Thank you for posting this. I’m truly sorry that you got so irrevocably burned by medical practitioner incompetence, ignorance, etc.

  4. Sue at 7:18 pm

    Robert, I finally have found someone who described their esi experience as mine. Like cold water running down my leg or bubbles popping down my leg. I felt the surgery so he obviously missed! 15 years later I’m learning to live in daily pain.. When I confronted the anesthesiologist after my surgery, his only response to what happened was, “I don’t know”. I’m waiting to find out if I have AA but I have almost every symptom along with Tarlov Cysts and spinal stenosis, but from research, I think an untrained person reading the mri could easily mistake one for the other. 2nd opinion will be from a neurosurgeon. 3rd from Dr Tennant’s in San Diego.

    Every year we have a charity event with my employer and all my donations are going to the rare disease foundation this year. We need help! BIG HELP!

  5. Stephen S. Rodrigues, MD at 2:40 pm

    NEVER get an epidural steroid injection!!!

    ESIs have no logical or scientific foundation and are commonly fraught with dangers with HUGE morbidity and mortality.

    ESIs are a route-around from the concept of “wet needling” the best holistic set remedies that can be curative.

    Yes the Allopathic medical community; AMA, HHS, NIH, FDA and State Medical Boards have anointed these options into standard of care.

    Yes they all cha ching to the bank while you lay in pain and misery.

    Yes they do not care about you or me ( a solo doctor) they have Emperor-like powers. They now since the ACA have shielded themselves from the long-term consequences

    “They” are now Gods-like with supreme power and immunity!

  6. Rhonda at 4:57 am

    Rhonda, I even share your name along with similar facets of your story. I had a lumbar puncture, but days before the procedure I felt very uncomfortable. After the procedure I developed PDPH. The neurosurgeon disclosed side effects AFTER the tap. A few weeks later, I opted to do a blood patch–again I had a most uncomfortable feeling. During the patch procedure, the radiology doctor repeatedly struck my spine no less than 3 times but I think more! I should had pulled my britches up and walked out!!! In the recovery room my bout with Arachnoiditis began with a rolling ball of medical collusion. I detail my plight at https://fierytrial.wordpress.com/2015/08/16/arachnoiditis-my-story/ I developed nerve clumping at the L5-S1, and have been experiencing relentless pain in my feet and back, continuous twitching in calves, along with other dreadful symptoms. I commend you for your post and candor on your story. I think awareness is key to change on what is happening and that doctors must be upfront with patients about the risks. A system of protocols should be in place to address when patients began to express pain after the procedures (epidurals, lumbar punctures, blood patches etc. ); evidence indicates immediate administration of intravenous steroids might provide long term benefits regarding the course of the condition. My sister informed me there is a group of neurosurgeons which apply some type of protective coat to the nerves BEFORE any such procedures–not sure what it is or who they are, but I will research it out. Thank you Rhonda for sharing! Keep your faith up–you are in my prayers!

  7. Tracy Webster at 8:45 pm

    Your story sounds so much like my own only I have no proof that I got my AA during my 12 injections/procedures. I had esi’s and rhizotomies and they just kept messing with me for one year.

    I gained 75 lbs and was put on cymbalta and gained another 25lbs. I was thin when all this started. One doctor tried to blame my weight. I told him I was thin when I began this journey! I had fusion surgery and I believe that is what put the nail in my coffin so to speak.
    I woke up and had all the symptoms of AA.

    Then I started researching and unfortunately my fusion didn’t take so the doctor ordered a myelogram after one year and no bone growth noted on xray. He said it would be the only way to tell for sure if I had any bone growth. So here I was knowing that the myelograms cause arach or make it worse, but I had to prove I had failed back surgery for disability. The doc would not admit I had arach and neither would the doctor reading the myelogram.

    I sent my MRI to a well known researcher and author for AA and for a fee, he read my MRI DVD and diagnosed me with AA. He sent me back a 12 page report. Unfortunately because he didn’t see me in person, I am afraid they may not use it in court. I don’t have a date yet for my disability hearing , but it is coming soon.

    I am in daily hell. The pain is so intense. Always a burning pain in the lower back at L3 to S1. Ice pack help along with high doses of opioids. I have been very lucky to finally find a physiatrist who understands pain meds and how to prescribe them and she is not afraid of the DEA. She is one of a kind.

    I use a powerchair which has given me some independence and less pain and I try to do stretches so I keep my muscles working but I have to say buying the powerchair and a adjustable bed has been the best investment for myself. The bed has both the feet and head adjustments with wireless remote so I an get comfortable and the chair saves my spoons and pain. I got the chair off craigs list for $700. It is very hard to get insurance companies to approve. I did get a doctor to write a prescription for a wheelchair but you have to go through a lot of hoops to get the paperwork done that they want. They make it practically impossible.

    Anyway thank you for writing this article. I have shared it on my facebook wall!

  8. Dena Meeks at 6:39 am

    Thank you for sharing your story, I hope you plan to tell us more in the future. I fear that I have Arachnoiditis myself, after an epidural went very wrong a few years ago. I had several epidurals prior to the one that “changed everything” for me, and my experience was much like your own, a different doctor, no explanations and just a bad feeling, a sense that I needed to get up off that table and get out of there. Like you, my tears just fell to the floor, nobody noticed and nobody cared. When I screamed out in pain (I have never done that before or since then), the doctor was dismissive and rude. I could not walk, was advised it must be something else and also advised to go to ER “if you are really hurting that badly.” I can no longer walk without assistance, forced to use crutches or a walker at all times and headed for a wheelchair (or scooter?) by the end of this year. The closest the doctor came to admitting that anything had gone wrong was to say that my weight made it difficult for him to hit the right spot, and advised me to lose weight. Odd that the first three doctors didn’t have the same issue. Thank you for sharing your story.

  9. Toni Werner at 7:12 pm

    I also have AA, I was never given any of the needed info either.. But there was one time that I didn’t like the Dr. that was about to give me an ESI.. He asked me what all my issues were & I told him I had Thoracic Outlet Syndrome.. He told me there was no way I had it!! I was already hooked up to an IV & just about ready to go into the room for the injection.. After he walked away, I told me husband (at the time) that I didn’t like him & didn’t feel right letting him do the ESI.. So I had the nurse unhook me & I got dressed & left!! That was almost 20 years ago.. I had many, many more ESI’s after that & eventually ended up w/ AA. I believe that day I possibly delayed the inevitable!!

  10. Terri Anderson at 2:51 pm

    Thanks Rhonda for sharing your story, and I certainly struggle with my new life as everything I used to be is now gone forever. Arachnoiditis is an intractable pain condition that we can’t just “get over” as there is no cure. After we are harmed, we have to fight for the real diagnosis, and we are typically bounced around. We are often convinced to undergo even more invasive procedures (myelograms, “diagnostic” injections or nerve blocks) before we know the full extent of how we have been harmed.

    The technology is not available to accurately assess damage to delicate neural tissues within the spine, and there are no studies available to assess alteration/obstruction of Cerebral Spinal Fluid (CSF) flow. The formation of scar tissue takes weeks, even months and years, to develop. This is another reason why the full impacts to our Central Nervous System are not fully recognized.

    Most of us are shocked to find out that there is no steroid approved by the FDA for the epidural route of administration. The April 23, 2014 FDA warning states that “the effectiveness and safety of the drugs for this use have not been established.”

    The FDA warning also states: “Patients should discuss the benefits and risks of epidural corticosteroid injections with their health care professionals, along with the benefits and risks associated with other possible treatments.”

    How are we supposed to discuss the benefits and risks with our doctors? Isn’t that what we pay Doctors to do? They should explain the Risks. They have no problem explaining the benefits. If we bring the risks to their attention, they reassure us the risks are rare. I would have never consented had I known about arachnoiditis, and that it would rob me of everything, including my career plus the joys of hiking, skiing, running, planting flowers and even mowing the grass. Arachnoiditis is devastating to my family, friends and co-workers. This has impacted not just my life, but all those around me. My friends and family have asked me to stay here for them. I am fighting for those who care about me, as I died inside a long time ago.

    And here is the FDA warning as patients considering an ESI need to check it out. Also share with your doctors since that is our job now: http://www.fda.gov/Drugs/DrugSafety/ucm394280.htm

  11. Tom Bresnahan at 2:18 pm

    Thank You Rhonda for sharing your story. It is one that is happening too often and being ignored by the medical community. Unfortunately the doctors that know better refuse to speak out against those doctors whose motivations are entirely focused on profit. These injections are a Band Aid at best. Why risk a persons future life for such a small amount of relief? Money! That’s the only motivator and there isn’t a doctor out there who could make a legitimate argument for subjecting a person to this risk. There are medications that will give a better result with very little risk. You are always in my prayers! All of us who suffer with this horrible infliction are bonded together by our strength and desire to help others from a life of misery!

  12. Donna Corley at 12:45 pm

    Rhonda, thank you so much for sharing your story. You are such an inspiration to me and others who suffer with this horrible disease.
    I was also harmed through epidural steroid injections during labor with both of my son’s in 1992 and again in 1995. I was never told that the doctor administering the epidural had punctured my dura, injecting the medication into my spinal cord canal. It has taken me 24yrs to get properly diagnosed with adhesive Arachnoiditis. Even now the radiologist’s refuse to put my Arachnoiditis diagnoses on my MRIs. My prayers are with you my friend. Thank you again for sharing your story and helping to spread awareness for us all.
    Love to you always.
    Donna.

  13. Cynthia Farrell at 11:53 am

    Thank you so much for post!!! I have fibromyalgia, chronic fatigue, lupus, etc., etc….
    I am also a nurse. What touched a cord with me as I read your testimonial, was the fact that you heard that still, small voice in the back of your mind trying to alert you to a dangerous situation. It is so important for all of us to heed that voice!!! Many is the time I heard that warning, and I still proceeded with whatever event was happening, and have regretted it greatly. First, medical “professionals” who fail to identify themselves, fail to orient the patient to the environment and procedure, and behave in a reassuring way, is a big red flag that it is not safe to proceed. I have a real pet peeve about physicians who fail to introduce themselves to their patients. It is not safe, and is just plain rude!!!

    Also, your description of the pain you endured, is one of the best illustrations of acute and chronic pain I have ever heard! You brought to life the agony of what you went through, and I know many of your readers will identify as well. There is a major lack of qualified professionals who treat pain as a specialty. There is very little research on treating, and living with chronic pain. I too, live in East Texas, and can’t believe the lack of physicians and nurses who understand, or care, about effective treatment of pain. Because of my 37 years of experience as a Hospice nurse, I have become well acquainted with these issues, both professionally, and now personally. I just wanted you to know how much I appreciate your story. Thank you for sharing, and I wish you luck as you continue this journey.

    Cynthia Farrell

  14. Rebecca at 11:02 am

    I am glad to see these stories coming out..The Medical profession has done harm to so many patients including myself. In 2005 I was harmed by an ESI, with depo-medrol that was injected into my dura as well. Living in this pain has been a nightmare for me, ending my independent life, job, and losing many friends. Now I use depend on opioids to live a normal life..This also is under fire by the CDC, which is going to make it even harder for chronic pain patients. Stressing about this is the very last thing we need on top of our many other issues dealing with Arachnoiditis. .

  15. Robert Cuminale at 10:30 am

    I consented to an injection for a blown disc. Something happened during it enough that I remarked to the doctor that it felt like cold water had been poured down my leg.
    Afterwards my pain was double what I’d had before the injection. My surgeons were unavailable and for three days the PA kept saying to take the pain medicine I had been prescribed before the injection. Nothing could convince that something was wrong.
    Friday afternoon I went to my regular doctor who gave me a Demerol injection which gave me a few hours of relief. That night the pain came back even worse. I laid on the floor until 5AM and my wife took me to the emergency room. I received an IV of Dilaudid and three other medicines. I went to sleep for a couple of hours. When I awoke my wife said that the injections had been repeated while I was out because I started to roll up due to the pain returning.
    The ER doctor called the surgeon’s partner who decided I needed surgery on Monday instead of the scheduled Thursday. I refused because I wanted another MRI to find out what had happened to me. I was then dropped by the practice and had to find another Neurologist.
    Afterwards he apologized for the large scar. It seems he kept finding pieces of the disc pushed down into the nerve bundle and had to keep cutting to get them out.
    I found out that the surgeon who was originally seeing me wasn’t going to be operating on me. He had lost his operating privileges and was leaving the practice. His partner was doing all the scheduled surgeries.
    There has been no recourse against any of these incompetents because there was no way to prove that the problems weren’t just related to the original burst disc.