My Story: Disabled by an Epidural

My Story: Disabled by an Epidural

Every morning is the same. I wake up to the searing pain of being in one position too long. I’m trapped this way, my body paralyzed, until I can painfully begin to straighten my muscles that have been in solid cramps and spasms all night.

When will the day come where they don’t straighten anymore? Is today the day?

Sometimes I just cry.

Sometimes that day in the hospital rushes back to me. I went in to have that beautiful baby girl. I did it natural with my first and was absolutely positive I could with my second. But every doctor I saw literally scared me into having a C-section and an epidural.

“They’ll break her shoulders. It will take too long and she will die. You’ll be rushed in for a C-section and having the epidural in place could mean her life or your own.”

Dawn Gonzalez

Dawn Gonzalez

Still I chose natural. I did it the first time. There’s no doubt I could have done it again. But out of sheer terror, I agreed to the epidural.

The “doctor” (who I later found was a nurse assistant) jammed the epidural needle into my spine. I’m a tough girl. I was expecting something jammed into my spine. He started the medication and I couldn’t take it – I felt pinching, burning, fire, lightning! I finally screamed and moaned. With the needle still in me, he asked, “Why didn’t you tell me I missed?”

That made me feel guilty, like I had done something wrong. He whipped the needle out, shoved it back in and I collapsed back on the bed. He left in haste. The full body uncontrollable shaking came next. I was nearly incoherent.

He had just given me Arachnoiditis, aseptic meningitis and chemical meningitis. And in no way acknowledged it. Lied on my chart that everything went fine. My blood pressure immediately shot up 50 points, dropped 30, and went back and forth. Even my lips were numb and tingling.  I couldn’t speak and bit my tongue a few times.

I tried to ask if this was normal. “Oh yeah we see it all the time,” I was told. That does not mean its normal!

Then I had to be catheterized. My epidural had been so misplaced I was numb up to my chest. My oxygen was not stable. Then they started the IV drugs along with epidural drugs. This should NOT have happened! I was opioid naive. My daughter and I got a double whammy of IV fentanyl and the fentanyl he was pumping into my spine — which was way too much, according to the anesthesiology charts.

I’m so glad my baby is here. So glad. What she went through was torture. My blood pressure and my daughter’s blood pressure were all over the charts. I was dropping and gaining blood pressure, according to the nurse’s notes. But the anesthesiologist never came back in the room. He should have been monitoring me.

I never saw him again. He didn’t even record my time of birth. But, he got paid well to be there by my side for the entire time. I had Medicaid at the time. I was not directly spoken to and was treated subhuman. It’s been explained to me that this is fraud.

The doctors had been telling me I couldn’t have her normally: “No way, not with your weight. She’s too big.”

So when I finally said I needed to push, the only nurse in the room said, “Oh yeah, go ahead. We are gonna be here awhile!” She laughed and rolled her eyes!

I gave one big push, I was crowning and my mom looked down and said, “There’s nothing to catch the baby!” She would have dropped off the table onto the floor had I continued! It brought this nurse from her lazy standing around on her cell phone to calling a code and a team rushed in. Two more good pushes and she was out. Face up and all.

These are my morning thoughts sometimes. Other times they are the horrific epidural steroid injections “everyone has to go through” at the pain clinic. I was being treated for pain for adhesive Arachnoiditis, but didn’t know it. Even though it was very clear on my MRI. So clear, I saw it myself after comparing images online.

I questioned my sanity. How could they be so blind?  A neurosurgeon ignored it and suggested I try the injections, so I thought it was fairly safe.

The needle went in so fast — like a jab — and I instantly burst into tears. I started to push myself up from the bed. The room was spinning. I fell completely back down and held my eyes tight, ready to vomit. I told the tech I can’t hear! I can’t hear anything! He said it’s normal.

That was dural puncture number two in my spine. I felt like somebody had crushed my tailbone and I couldn’t lift my legs.

That night, I was sick as a dog with “flu-like symptoms.” I had every symptom of chemical or aseptic meningitis in the book, and ended up in the ER that night from it. The tech put me in a wheelchair and wheeled me out to my husband, completely dazed and obviously not well.

I returned to tell my pain doctor how sick I was. And my bladder symptoms were so much worse. She said sometimes that happens. Let’s try another shot in two weeks. During those two weeks I was getting sicker and sicker. I could no longer urinate. I ended up with a blood infection in the ER yet again, begging that I cannot urinate.

I was finally sent to an urologist, who told me bladder and bowel were completely paralyzed from spinal nerve damage. I was catheterizing myself. It was painful and humiliating.

I trusted the doctor again and went in for my second epidural steroid shot. Scared to death. I told the tech, who told the doctor what the urologist had told me. He said there’s no way it could be related. He either didn’t know what Cauda Equina Syndrome was or just blatantly ignored it. Bam! I was given shot number two, herded in and out like cattle.

I called the neurosurgeon three times reporting my bladder and bowel issues. I was told not to call again. My family and I were frantic. I was begging in the ER for help every week. At times I was laughed at and mocked.

This time my right leg was completely numb, like your lip at the dentist goes numb. I also started to feel fiery pins and needles. Was this a sign of hope? Or of things worsening? I felt water dripping down my legs that wasn’t there, invisible bugs in and on my skin. Walking on hot rocks and broken glass. Classic Arachnoiditis symptoms.

I had one more injection after this and it felt just like the first. I had aseptic meningitis from dural puncture.

It took my family traveling halfway across the country to find help. More than 15 neurosurgeons, physiatrists, neurologists, you name it. They didn’t want to say the word. Not until 3 years later, when my statute of limitations was up.

I desperately wanted to trust my doctor. Some people say to me if they were harming you, why did you get more injections? Because I was scared. I was not given informed consent for any of it. Not until months or even years afterwards did I find out these steroid injections are not FDA approved.

I really don’t blame my pain doctor. She was truly concerned and I still see her today. She did not read my MRI. She followed the shot mill orders. Every patient must receive three epidural steroid injections.

I’m 35 now, a mother of two little girls and a stepmother of two adults. I can’t even change my clothes or give myself a bath. My little girls will never remember a fun mommy, the way I used to be. It slices my heart like a knife. Like I might die any day from the heartache.

But I go on for them and my husband. I cry every time nobody is looking. I don’t recognize myself anymore. I’m a shell of a person. Damaged and pushed away, told I was fat and crazy. They got their money. I lost my life, marriage, and motherhood as I knew it. As well as my career, my health, and my dignity.

This was not from some terrible accident. Not from some horrible virus. THIS IS FROM COMMON, EVERYDAY PROCEDURES.

Yes, you blindly blink over the consent forms, and you think “this can’t happen to me.” Well guess what? I thought that too.

Any invasive procedure into your spine can cause Arachnoiditis. Which is why the FDA just put out a warning about them.

They are creating an army. A broken, lifeless army that needs care and disability. Tossed away. It’s time to end that. They get $2,000 per injection. For a 15 minute procedure that’s not even FDA approved. It’s easy money. It’s creating generations of damaged people on disability, sucking money from the healthcare system and the economy. And the doctors are aware.

I forgot to mention. One of the main symptoms of Adhesive Arachnoiditis is blaring pain, worse than child birth, burning, fiery pain – similar to end stage cancer, but without the release that comes with death.

Some people do choose death over suffering and some die from related complications. I know several who have, sadly. We continue the fight for help and to spread the word in their honor. And for the victims and survivors of the fungal meningitis outbreak, who are also now suffering from Arachnoiditis. They’ve been tossed away as well.

We wrote letters and warned the FDA for months, if not a year, before that outbreak. Greed is what cost those people their lives and bodies. Blood is on the hands of the interventional pain management physicians and the FDA.

12_7.jpgDawn Gonzalez lives in South Carolina. She is a patient advocate and activist with the Arachnoiditis Society for Awareness and Prevention.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Dawn Gonzalez

There are 18 comments for this article
  1. Leah at 3:45 pm

    Dawn, I am so sorry about what you have suffered through. It is very similar to my story. I was finally diagnosed with Progressive Adhesive Arachnoiditis (PAA)in 2012 by a doctor who was unrelated to my spine surgeon (2 Charite Discs implanted and failed in 2006 ) or the doctors who suggested steroid epidural injections, or my OB/GYN who never warned me about the epidurals I was given when I had 2 babies within 19 months or the doctor who performed my Discography (procedure where ink is injected into the spine to determine disc damage)- since they were all clumped together in a 3 year period of time, its hard to say which is the main cause, but when I woke from Charite ADR surgery screaming from such horrific pain that’s barely manageable even today 5 years later, my neurosurgeon told me to not worry for the 1st two years, as the inflammation may take that long to “die down” completely, aka: until the statute of limitations is up. It was a complete nightmare for years, as no one believed my pain and I was viewed as a drug seeking addict, complete with a family intervention and “tough love” as I was “under medicated” and acting like a drug seeker..because I NEEDED drugs! I require very high doses of narcotics just to be comfortable, huge amounts of several different strong medications just to be pain free. ( I spent 2 years suffering through every type of non medication pain remedy- none worked) Which leads to edema weight gain even though I barely eat and progressively disabled to the point where I cannot return to work and will most likely end up partially or completely paralyzed within 5-10 years at most. My Charite discs “failed” and are so life threatening that everyone who has failed discs must have them removed, but my surgeon implanted 2, (against FDA guidelines which state “only ONE per spine’) anteriorly (from the front, as my 1st spine surgery was from the back) which means there is so much scar tissue along with the PAA that ANY type of surgery is life threatening, so much so that 4 different surgeons reviewing my case advise leaving them in. I also wasn’t aware that the discs had a 10 year lifespan which is coming up soon. But by far, the worst, is the pain of PAA which like you and others have described, the worst end stage cancer pain- so excruciating- it feels as though my back/skin is on fire burning, multiple knives stabbing into me, intermittent zinging electrical shocks, back/leg/feet numbness and tingling and I am progressively losing my ability to sense when I need to use the restroom. Then, to sum it up, there are NO charitable organizations, funding or advocates that help victims of this horrific disease, especially mothers with children who are desperate for support. I am currently working on a letter writing campaign to bring attention to AA/PAA by sharing my story and the outrage of doctors covering up and hiding behind the law (which needs to change asap!) with as many politicians, doctors, government agencies, news/media etc. as I can to bring awareness and hopefully donations to help victims left alone and desperate. Feel free to email me.

  2. Stephen S. Rodrigues, MD at 10:19 am

    For clarity, Epidurals Steroid Injections have no valid scientific reason to be used in the treatment of long-term pain. Sorry none, if someone can find a counter argument, please let me know.

    If one concludes that it is the steroids are the active ingredient to alleviate pain then they can be given by mouth, IV or IM. We have been using this idea for a long time and it is worth a try in many situations. Sometimes it works but many times nothing happens. I still try a big dose of steroids when I’m stumped but it is like a “Hail Mary Pass” with low returns.

    IMO, the logic behind putting them in the spine is because that is where you THINK the pain is caused. NO! What is actually happening is the the injection of steroids into a small space will dissolve the surrounding structures and turn them into “mush” which might quiet the pain. This is done at a huge risk of spinal atrophy and collapse. This would be a catastrophic disaster of epic proportions.

    I would ban Epidural Steroid Injections forever out of existence.

  3. Anita Ashley at 5:56 pm

    I have arachnoiditis but I didn’t get it from an injection, I got it from a botched surgery to remove bone spurs. I read the paper that I signed. Nowhere did it say I would come out with my little deadly friend arachnoiditis whom I have given the name of George. I am a 61 yr old housewife, hubs is retiring in December and I have gotten stuck with George. To top this all off my surgeon after reading the after MRI told me I had arachnoiditis, the nurse in there with him gave him a look…you know that look like hmmm what did you just say to her and in a span of 5 min to him reading and looking at the after MRI told me he would no longer be my surgeon. So I was turned over to Dr. Singh, he looked at my before and after MRIs told me that I needed the stimulator. I have got to know Dawn through the Facebook, she is a fantastic person. I am so thankful she helped me and my daughter as I went through the procedure to install the SCS. Thank you so much DAWN…

  4. Janet Vitale at 8:51 pm

    I believe also that a Mid-Wife may be the answer to avoid being bullied by Doctors into the situation of having an Epidural procedure strongly suggested to a Mother during childbirth when their Labor Pains are so severe that they can not see straight. It seems obvious to me that Doctors take advantage of these expectant Mothers when they are so very vulnerable and scared into doing what may harm them. The woman are assured that having an Epidural to relieve their pain is a safe procedure with maybe only a few temporary minor side effects may occur, rarely.

  5. Sandi Parkman at 6:42 am

    I feel like a miracle has happened by reading this ! Never thought I would hear of another woman who was going through the same exact thing. Feeling hopeless and don’t know where to turn for help or how to convey that I’m in agony and it’s difficult to even explain . Thank you ! God bless +++

  6. Dawn Gonzalez at 8:55 pm

    Great question, Munch. They were intent on scaring me to death. They make a LOT more money and less work with epidural.

  7. Munch at 10:14 am

    Dawn, Why didn’t they allow you a trial of labor first before deciding the baby was too big? Do they pad the Medicaid & insurance bills with more codes for more all the interventional procedures? Of course! Why would any medical person yank out a needle and shove it back into another spot? The needle’s been used by him on you at that point so he should have started over with a new sterile needle.

    I have had an intrathecal pain pump for the past 2 years. I’m on my third pain pump because every 3-4 months something goes wrong it. They’ve had to replace catheters, connectors and the pump itself. Now it does not seem to be working at all. My PM doc says we can order compounded meds from a pharmacy but after the NEC issue where epidural steroids were contaminated who wants to take a chance?

  8. BL at 10:53 am

    Janet Vitale, Yes, they are afraid unless the woman is in that pain and desperate they won’t agree to the it.

    When I began having my children, there weren’t the options there are today for L&D. I was knocked out with medication with my first three. When I had my fourth, I had done a lot of reading on the epidural’s. While I was in labor, the anesthesiologist came in to ask me what I wanted for pain. He pushed the epidural’s and was against the medications. I asked him if he could guarantee me that there would be no negative side affects from the epidural for me and the baby, he replied “no, I can’t guarantee it.” I then told him that since I had had the medications with the first three and all of us come through it fine, that I wanted the medication. I also told him that I didn’t want to be knocked out. I was awake, the pain was bearable and I knew when my daughter was born and I got to hold her. I took medication and was awake with my fifth child. With my sixth and last child, I had nothing for thr pain.

    We need to educate ourselves, with reputable information. Don’t believe somethng because you read it or someone says it. You have to research and verify it with reputable sources. Look for the contact info that producted the info, call them and research their reputation. We have to share our knowledge and feelings with our drs. Often the way we feel can determine how successful or unsuccessful a treatment is.

    In a Good Doctor Patient Relationship, the patient has trust in the dr and the dr has trust in the patient.

  9. Janet Vitale at 7:53 pm

    I do not understand why during the 3rd trimester of Pregnancy this subject is not addressed. When a woman is in horrible pain during Labor and Delivery it is very hard to make an informed decision about Epidural Injections when the Doctors and Nurses are pushing you into it. You are scared, in pain, not thinking clearly. This subject should be discussed at length and all options explained and risks of the procedure at a time when the woman is thinking clearly and can research the method of labor and delivery. Are Doctors afraid that if patients were fully informed prior to Labor and Delivery they may decide these injections may be refused?

  10. BL at 10:35 am

    It is a disgrace to the medical profession that some drs will insist patients have these injections in order to receive their pain meds.

  11. Dawn Gonzalez at 7:47 am

    Pat your support for us has been amazing and our community is ever so grateful. If even one person is spared it’s so worth it. I’ve had so many shares it’s been incredible. But also saddening because a lot of people are waking up to realize what has been done to them as well.

    I’m sorry anybody else has had to experience this. We need to stay informed and KNOW what they are doing to our bodies. Nothing is without side effects or consequence, and we deserve to be fully aware and have INFORMED CONSENT!!

  12. Brenda Alice at 1:54 am

    My Blessings, I also have had trouble with the epidural when my son was born 33 years ago and had problems ever since. Mid-forcets are no longer allowed but I believe my son was damaged from that delivery. I shook from the moment the epidural began to point my teeth because sore..pain relief never accrued.

    Now the pain clinic has forced me to have repeated useless painful injections in my back that aren’t FDA approved in order to get my medication because of my back. Medication only makes the pain bearable. Thank you for writing about this.please take care and know you are valued.

  13. Rainey at 7:42 pm

    I had a spinal tap in 2008 a blood patch a day later. Although it was nothing like what Dawn went through, it was quite an ordeal. I was treated by trainee doctors, who screwed up and then covered their asses. I had a long and difficult recovery, over many months.

    I am still angry that I had to pay the price for their mistakes: my job duties were restricted, since I could no longer lift anything over six pounds. I returned to work four days after I had the second procedure. Everybody started telling me their epidural stories and how difficult the recovery had been (nothing like Dawn’s but no walk in the park, either). We were all lucky.

    I hope these procedures fall out of favor soon, or at least that clinicians can make patients more aware about the difficult recovery that almost certainly awaits them.

  14. BL at 7:34 pm

    It would be nice if patients could sign the same type of forms to release drs and pharmeceutical companies from legal responsibility before we were prescribed meds for our chronic severe pain.

  15. Charity Sheeks at 5:26 pm

    I know I didn’t read every word, I was in so much pain I just wanted the injection and for it to be overwith…however, they stuck me 3 times also before getting it ‘right’!! I was told nothing about how they messed up and if my husband had not been standing there behind me I never would have known at all!! I don’t know what all damage they caused because I wasn’t aware it could cause that type of damage to our bodies (dumb on my part I guess, should of looked it up) but anyway. I understand parts of what you went through and I a so sorry for everything we all have to endure at the hands of these “know it all” “playing god” type of people!!

  16. Ryan Lankford at 4:27 pm

    But but but…opioids are dangerous!

  17. BL at 11:29 am

    I wonder if patients actually read every word of the form you have to sign before receiving the injections, and understood what it said. . how many would go through with the injections.