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