#arachnoiditis

Medical procedure gone wrong / Traumatic birth / Chronic illness

I’ve been incredibly vocal about my experience with getting an epidural injection during my labor & delivery in 2018 if you know me on my personal social media. It’s been three in a half years and I’ve decided to try to go a little more public with my story. Why? Because I have felt so hopeless, exhausted, sometimes crazy, and incredibly alone over these years and if telling my story helps just one other women who might be experiencing the same things as me, that’s enough of a reason for me. I’ll be splitting it all up into chapters to help make it easier to read! 

*LONG DISCLAIMER*

Please keep in mind, my story is mine and it is still ongoing. I’m being seen by medical doctors and still trying to find a diagnosis after 3.5 years. I do share my opinions but I also share factual evidence. I am not a doctor and I cannot diagnose anyone, I can only share my personal experiences. Please seek out professional help and always do your research from reputable sources.

Secondly, I am not anti-medicine. I am pro do your research and make sure you know what you’re letting people put into your body. I am pro advocate for yourself and your health. I am pro listening to women and mothers and taking them seriously. As a woman and a mother, I’m an advocate on recognizing medical gaslighting and knowing your medical rights, things I didn’t know about before going on this journey. I’m honestly not against epidurals even though I had a horrible experience with one. I won’t tell you not to get one, but I will tell you my experience with getting one, how my life changed after getting one, my pain I live with every day after getting one and all of the risks, no matter how rare they may be that are possible with these procedures.

Mothers are being handed a consent form while they are having contractions every minute, bent over in pain, about to give birth to a whole human being and expected to understand what they’re reading, to care about what they’re signing and to fully understand the risks involved. Doctors are failing to verbally inform of all the risks as well and not all of the risks are listed on the consent form. 3.5 years ago, I didn’t question it either. I had no reason to. Now living with the pain I’ve had to go through, I see how much that needs to change. I am not anti-medicine, I am not “ban all epidural injections during childbirth” at all. I want to make that clear. Even if at times I seem hostile or against it, please understand how much that needle has affected my life so I do get emotional when discussing it, however I still recognize how rare of an occurrence this is and most of the time epidurals work just fine.  

Chapter 1 - Stabbed in the back

It was finally induction day! I was 39+1 weeks and so ready to not be pregnant and get control of my body back. I spent most of my time pregnant bending over a trash can vomiting multiple times a day, I also had gestational diabetes so I was pricking myself 4 times a day and dieting, so boy was I over it! I just wanted to meet our precious baby.

I went into my induction with one goal and one goal only: have a healthy baby. That’s all that mattered to me. I didn’t have any type of birth plan other than get the baby out. I did however knew that I wanted to try to go as long as possible without any pain meds. I wanted to give birth naturally, I wanted to see if I could do it. After all, that's what us women were made to do! I won’t go into details about my labor so let’s fast forward a bit. I was 6 cm dilated and my water had just broke. I was doing pretty good up until then but the contractions started to come on so strong and they weren’t giving me any breaks. I remember my husband telling me, “You don’t have to deal with this, you can get an epidural. It’s okay to get one if you are tired.” I was so tired, but I pushed on for another hour or so until I just couldn’t handle it anymore, or so I thought. 

The anesthesiologist comes in and asks everyone to leave, except for my husband and nurses. We go over the consent form and how the procedure will go, at least I’m assuming we did. This whole time in my labor is a huge blur. I’m having contractions every 45 secs to a minute and I didn’t really care in that moment. I just wanted some relief.

I sit on the side of the bed, curled up against a pillow, trying to not hold my breath at every contraction. My lovely spine is exposed as the doctor gets ready to jab a needle the size of my hand into it. He starts the procedure. After about 5 minutes I could tell something wasn’t going as planned. There was a lot of maneuvering about, there was a lot of pulling sensations that I thought were odd. The doctor told me he was having a hard time getting it placed, he told me my ligaments were super thick. He tried at one spot, couldn’t get it in. He told me he was going to have to try a different spot. Each time he tried a spot, sudden electrical zaps would shoot through my lower back and buttocks, making me jump. It was frightening, that’s the only word I can use for the feeling.

Here I am trying to stay as still as possible while going through contractions because there is a huge needle in my back and something is happening to my body that I can’t control. I screamed out each time and started to cry, trying to explain what I was feeling to the anesthesiologist. He was still struggling behind my back but now he was perplexed as to why I was uncontrollably jerking every time he poked me. “Let’s try another spot,” he said. At least 30 minutes has past now. My mom and my sister are waiting in the hallway, trying to figure out what’s taking so long. I remember reading that epidurals usually take about 10 minutes to complete so I knew something wasn’t going as planned. 

Onto another spot he goes, poking me another time in another spot on my spine. Het gets it in, I feel some relief mentally very briefly because I know this should mean my contractions will fade soon. Suddenly, as he starts to inject the epidural medicine into my back, I start to feel this intense pressure going up my back, my neck and all the way to my head. I heard liquid sounds in my ears as this pressure was going up my back. It felt like liquid was being injected into my spinal cord and that pressure was traveling up my back, into my neck and into my head eventually building up so much pressure that so I legitimately thought that my head was going to explode. I screamed out in pain. What the hell is happening?! My back was on fire, my head was throbbing, the light in the hospital room blinded me. Everything is blurry. The doctor asked me what's wrong, what hurts. I try explaining to the best of my ability but all I can get out is “my head, my head!” My head feels like it’s going to explode at any second. He keeps telling me over and over he doesn’t know what happened. Neither did I. All I knew was that this man had stabbed me in my back and I was in the worst pain I’ve ever experienced in my life all while trying to make sure I have a healthy baby. 

My head is still spinning, my tears stained my cheeks. Contractions are still coming on strong but the epidural is in correctly now, at least we think it is. I lay back down and try to rest before it’s time to push. I keep getting told that everything is fine. I keep getting told that nothing wrong happened. But my head is killing me. I still have that same pressure that I experienced during the epidural administration. I try to stop thinking about it but the pain in my head was so bad it was hard to ignore it. I had a job to do though. I had to birth a baby!

An hour after the pain explosion during the epidural, the epidural started to wear off. I knew that wasn’t normal but again, I was just trying to focus on having my baby. It’s finally time to push, the pressure is unlike anything I’ve experienced before. My head is still throbbing, making it hard to push a whole baby out from my body. I remember pushing so hard because I couldn’t stand the pain any longer, I just needed the baby out. So I kept pushing, pushing, pushing, hurry up and just get out! I was getting lightheaded from pushing and the pain, I was worried I wasn’t going to be able to finish pushing. But 5 minutes later, a beautiful baby girl was born. Adeline Mae, 6lbs 8oz, 19 1/4 inches long. She was so tiny...and so so perfect. For the first hour I forgot about the pain I was in. I forgot about the horrible epidural experience. I forgot about how scared I was. I was just so in love with the tiny human we created, nothing else mattered. But the head pain never went away. It’s still there to this day as I’m typing this, 3 in a half years later.

Stay tuned for chapter 2.

*DISCLAIMER*

I've commented many times over the years about the sad state of my back. Of course, I just assumed that I had a bad back from the many injuries sustained while cheerleading and in martial arts. Then I had that incident with a client who flipped me onto concrete and the professionals told me THEN that the injury would have lifelong affects. I just never realized the extent.

After the twins, my thyroid shut down again, I gained MORE weight, and I had even more back problems. Of course, this time I was blaming the strain that the twin pregnancy took. I mean, they even dislocated my pelvic bone and I had trouble walking at all and well....everything in my body took a beating.

May of 2021 everything came to a head. I was in the boys room and my spine had a weird feeling and all of a sudden my thighs on both legs started convulsing and then went paralyzed. I could feel them, but I couldn't move them AT ALL. I was in the hospital for five days while they ran many tests. Nothing was conclusive, but that seemed to be the trigger point. After that incident, the paralysis episodes came more and more frequently. I was sustaining injuries from falls left and right. I was having more tests, but the only thing they conclusively ruled out was MS. I can't even roll over in bed. If I move a quarter turn, everything from my L4 vertebrae to my knees goes into a paralysis episode. Then I have to wait for it to pass, move a little bit again and then wait for the next episode to pass. I have been put on many medications for pain and nerve issues, but nothing touches it.

Anyway, the final diagnosis was arachnoiditis and ankylosing spondylitis. I had never heard of arachnoiditis. It's painful and debilitiating and there's no good treatment or cure. The amount of pain that I'm in on a daily basis often takes my breath away and there have been many mornings that I wake up crying and just wish for it to end. There's a reason it has the nickname of "The Suicide Disease". Of course, I have my three children and my husband to keep me grounded and reminded why I fight my way through every day. I have a wheelchair now for when I do out of house activities. I chose a manual wheelchair because I want to still be as active as I can, but it's hard because, as I said, I've gained a LOT of weight. I've been told so many times that I should have bariatric surgery, but my insurance refuses to cover it, even for medical reasons. I'm trying very hard to do as much exercise as possible and to strengthen my upper arms, but it's slow going and often frustrating. I have every faith in myself that I can do it, though. I'm looking forward to seeing how far I've progressed come this time next year.