The doctor came in to do the epi. I was expecting major pain. I had never had any kind of surgery, nothing, never a back problem or anything. I was frightened. He put the needle in, had to moved it around, in, out, wiggle.. Intense white lightening pain down my right leg. I was EXPECTING pain, so I sucked it up and tolerated. He informed me he was starting the medication. I tried to continue tolerating until I could no longer... I SCREAMED. HE screamed back "why didn't you tell me I missed?!". Needless to say, that moment would forever change my life. He pulled out, started over, and things went well. I had a healthy baby girl, completely naturally, after pushing maybe 20 minutes.
Within the next 48 hours, my blood pressure had shot through the roof, my back was throbbing at the epidural site, and I had a horrific headache. When I tried to walk it felt like my hips were dislocating from the sockets. But, I figured it was from just having a large baby. I had to lay flat from the headaches. I felt terrible. My daughter had to stay longer than me due to jaundice. My husband was pushing me around in the wheelchair to come and go to visit. I still had this killer headache for several months. The only thing that helped was to drink a soda or lay down. They kept telling me, it's just your blood pressure. Which before this, was always on the low end of normal. They never put two and two together that I was leaking spinal fluid. Or at least, they never shared that info with ME.
The epidural site continued to throb for a year and a half. A nauseating, sickening throb that just didn't feel right. I continued to have a lot of hip pain, sciatica started, and I started having mystery fevers and rashes. And what felt like constant bladder infections, with no bacteria present. I started seeing the doctor a lot for this, and was always sent home with antibiotics. Then the incontinence began. A nightmare for a woman in her early 30's. I was told, it's just from having kids. I went to doctor after doctor. I would tell them.. It hurts really bad in my lower back, and then I wet myself. Nobody would listen. With any increased activity, my back would burn, and I'd wet my pants. This continued to worsen and worsen. I started having balance issues, vision changes, and noises sounded much louder than usual. The light KILLED my eyes and head. What was happening to me?
Summer of 2010, the incontinence became constant, and I had a bad fall. I started falling down, bumping into things, and having intense dizziness when I was on stairs, looking out a window, anything to do with height. I also started with a whooshing in my ears. And the intense fatigue worsened. I would tell my husband.. I don't know what's WRONG with me.. I'm so tired! Still mystery rashes, fevers, and now incontinence and dizziness. What on earth? I was struggling just to make it through the day with my kids. The burning in my back was getting worse and worse. During this fall in August, I injured my thumb and tore ligaments in my shoulder, AND injured my back. I was sent to an orthopedist for an MRI. He told me "pick an injury, your shoulder or your back". I picked shoulder.
By the holidays, any activity caused incredible back pain. I was wearing pads for the incontinence. I was falling every week or every 2 weeks. I would go to the doctor with spasming up and down my back so badly, you could literally SEE it from across the room. Still.. What is happening? Nobody had any answers for me. I made it to Christmas Day, went outside to build a snowman with my kids, bent over, and couldn't get back up. I had never felt pain like that in my life. I couldn't even lift my legs. I couldn't move or even get out of bed without help. I was in bed for a week this time. My husband and I tried to go on a date. I cried trying to sit through dinner, called my mom and cried to her from the theatre bathroom because I could hardly walk in there on my own, and when I sat to watch the movie "SNAP" something popped in my back. I burst into tears in the middle of the movie theatre. We got up and went immediately to urgent care. I finally had my first MRI.
I have never been remotely the same. I went to doctor after doctor, physical therapy which landed me in the ER begging for help. Help me I'm wetting my pants and I can't walk! I was laughed at. Told I was just overweight, age (at 32?!), just from having kids. My MRI showed herniated discs, but nothing as severe as my symptoms. I was sent to pain management. I needed help getting out of bed, getting to the bathroom, getting up from the bathroom. My husband had to come home on his lunch breaks to change the baby's diaper and feed us. I picked her up one day from her crib, and I fell with her, wet my pants, and thought I would pass out from the pain. I was going to the doctor and ER begging for help. Please. I'm wetting my pants and can't even walk. They were clueless. Pain management wanted me to have epidural steroid injections. I went through three of those. Completely lost my hearing after the first, the room spun, and I almost vomited. The third, i had the same lightning pain. They punctured my dura AGAIN, and gave me an extra dose of neurotoxic benzocaine! I couldn't lift my legs for two weeks after each. My feet were numb, I started having extreme muscle spasms, my entire LEG was numb for a while.
My bladder went from spastic, to completely flaccid after the esi's. I couldn't urinate on my own. I was getting deathly ill from retaining urine. I ended up in the ER, blood flooded with white blood cells, blood pressure through the roof, thought I was having a heart attack, sweating. Crying. I can't pee I can't pee, the pain, help! The doctor dismissed me and told me he hoped my neck felt better. He didn't even listen. It was my LUMBAR! I went to the urologist. My bladder was completely paralyzed. My bowel was completely paralyzed. I could no longer move the toes on my right foot, or pick up my leg. I started having twitches in my body so bad I couldn't hold anything, and it felt like I was having electrical seizures. My toes were moving on their own like they were playing the piano. It was PAINFUL. At this point I was in bed 24/7. We spent all of our time traveling from doctor to doctor. Being told it was "something neurological" but nobody could say WHAT. I had been feeling bugs on my legs that weren't there. Water dripping down my legs. I couldn't even go sit in church without being on the verge of tears after 20 minutes. I couldn't sit, stand, lay, do anything without the most intense pain of my life. WORSE than child labor! But I was praying and praying.. Help me.
We finally were referred to a major teaching hospital. She was the first doctor to mention the ugly "A" word. BUT she also wanted to operate. Which would have been catastrophic. Luckily, it fell through. THEN... My Mom and Aunt came across Dr Aldrete in Birmingham. He confirmed... This IS Arachnoiditis, and Cauda Equina Syndrome due to that. It was bittersweet. Finally I knew, but there was no cure. He said he thought he could help me. We packed up to go see him. A trip that should have taken FOUR hours took NINE because I had to pull over and get out and cry every 20 minutes. But I knew... I HAD to get there. My husband half dragged me into his office, I halfway dragged myself with my cane, and collapsed on his table. I was sweating, twitching, burning, spasming. Within 15 minutes of him starting the IV, my pain dropped to ZERO. I felt the fog start to lift. I was in utter shock. What had I been through?
Day 2 of treatment, I started having pins in needles in my bladder and bowel area. I was scared. What WAS this?! It felt like your foot waking up from being asleep, times 20. I could now stand up and get out of bed, by myself, with NO problem. My husband and aunt were in awe. It was like a miracle. After what I had been through, that WAS a miracle, and hadn't happened in over a year! Day 3, pain stayed even lower, and my bladder and bowel function returned! It was like a dream! I took my girls on a very slow and careful walk around the hotel. My prayers had been answered! I went through all five days of treatment with my hero, Dr. Aldrete!
It has now been 8 months since my treatment. I can still get up and move on my own for the most part, pain still tolerable, bladder and bowel still functional, with the assistance of some medications now and again. I am still off the heavy pain killers. I can still rest without pain. That right there is the most important. I wasn't able to rest and sleep more than 30 to 45 minutes at a time for MONTHS. I still can't believe what I've been through. I have massive anxiety seeing any new doctors.
I still twitch, walk funny for short distances, my limbs fall asleep and I have muscle spasms, I swat at bugs that don't exist on my legs, and I can drive all of about 10 minutes, but Dr A gave me a second chance at things. He bought me some time. Who knows what the future holds? I'm adjusting to being a permanently disabled woman, which is hard. It's even hard to say. I have periods of grief. But I'm more of a mother and a wife now. I still deal with daily pain. Housework of any kind nearly kills me. I still need the wheelchairs and scooters and things to go anywhere. I never dreamed I would be like this at 33, all from going in to have a baby. Which is why, as part of AVA, I plan on helping to fight and spread awareness of this "silent epidemic" as long as I am physically able!
This the short version of my story. There may be a book to come in the future!