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A Little about My Situation...

Hi to all! 

I am 35 years old and have been experiencing lumbar pain accompanied with sciatica since 2001. I have always been a big girl (not huge, just plus-sized) and this, I'm sure, put strain on my lower back throughout my life. I first experienced pain while acting in a play. I was young, so the pain didn't stop me. I went to my GP and he gave me a cortisone shot in my hip. The pain would flair up every year and half or so and I would merely visit the GP and get another shot. I moved around often because I was a college student & still did theatre, but the pain was never enough to slow me down, it was more just discomfort.

In 2008 I started student teaching. The pain became more frequent and I found myself having to go to the GP for shots every 6-9 months. In my 5th year of teaching the pain intensified to the point that the cortisone was not doing the trick. I would have pain relief for a day and then it would come right back. I was unable to stand or walk for long periods of time, and this was causing problems at work (anyone who knows anything about teaching knows that principals do not like it when teachers are sitting and not moving around the room!). There were days I could not move my legs at the hip. These days would be random, no cause whatsoever; I would wake up unable to move. My GP sent me to physical therapy in hopes that I would experience some relief, but to no avail. After 6 weeks of the fruitless PT she sent me for an MRI. They found a herniated disc in L4-L5 that was causing my pain. The herniation seemed to be fairly severe. My GP sent me to a neurosurgeon for an opinion.

The neurosurgeon was conservative at first. He tried cortisone epidurals, but I did not find any relief from them. In the fall of 2014, after a myelogram, he finally said the dreaded "s" word: surgery.  I scheduled the surgery for Dec. 1st. When the surgery was complete the surgeon told my husband and my mother that the damage in my lumbar region was much worse than the MRI showed: I had bone spurs which had wound themselves not only around my herniated disc, but also around the nerves surrounding it. He had to cut much more out than he intended, but I should make a full recovery.

I found relief for exactly 2 days after the surgery. Thursday after the surgery I woke up with a headache that I thought was going to make my head explode. When I lied down the headache went away. Anytime I sat up it was so bad I was vomiting from dizziness. My surgeon's nurse explained about CSF headaches, which I had never heard of before. She told me to lie flat over the weekend and it should heal itself. Come Monday I still could not sit up without a headache and vomiting. We called the office back and the nurse told us to go to the ER. Of course, I was admitted from the ER. I spent two more days lying flat before they finally did a blood patch. I almost immediately felt better and was allowed to go home the next day. 

The next few weeks I spent not bending, twisting, or lifting and slowly recovering from the surgery. My back was swollen and warm to the touch, so my surgeon put me on a steroid pack to try to reduce the swelling. He finally released me to go back to school (work) the Monday after Martin Luther King day in 2015, Jan. 20th.

At 4:00 a.m. January 16th, 2015, I woke up because nature was calling. I rolled out of bed and made it to the potty when I felt something warm trickling down my back. I didn't understand how urine could be on my back, so I did what any normal person would do and I felt it. There was a hole in my back the size of the end of a ball point pen and fluid was leaking out. I called out for my husband and he saw that indeed there was a hole in the middle of my surgery incision and a yellowish fluid was pouring from it. It was about that time that, sitting on the toilet, I began to become faint. My husband grabbed a bath towel, folded it, put it on my back, and I laid on my stomach on the bed. He helped me change clothes and we went to the ER. Every time I would have to sit up (in the wheelchair at the ER, while I was giving a urine specimen) I would pass out again. Of course I was immediately admitted to the hospital and emergency surgery was scheduled. I can even remember being wheeled into the operating room and seeing the operating table. That's something no one should ever have to see! 

The surgeon found a hole in my spinal cord. Apparently the hole had been there for a while and CSF had built up in the area around my spine and become infected. He stitched up the hole and cut out more disc that had become damaged in all of this.

I do not really remember that day or the next. The first thing I remember after that surgery is Sunday. Of course I was lying flat in the hospital bed and had a catheter and a bed pan. I was not allowed to so much as move. I started vomited late that night and continued throughout. Somewhere during the night I lost consciousness and the rest of this part I pieced together from flashes of memory and stories others have told me. Monday morning the nurse came in to check my O2 levels and I was at 79. The nurse called the code and my bed was immediately surrounded by all kinds of folks. My poor husband was right there with me, too. I remember being very, very cold. My husband later told me my lips turned blue. The doctor on call on the floor called a friend of his that is an infectious disease doctor at the hospital. She determined I had bacterial meningitis due to a staph infection that had come up my spine and into my brain and sent me for a nuclear test (I'm not really sure what it was) and then straight to ICU. The only thing I remember is being very, very cold and not being able to breathe. 

I do not remember much about the ICU. I remember I did not like the light or for people to touch my head. I remember my mother sitting in a chair by my bed for days on end. I remember talking to my dead grandparents, who told me it wasn't my time yet. Mom told me one night my fever got to 106 and she and the nurse put cold compresses with ice wrapped in them all over my body all night to bring my temp down. When I woke I had been in ICU for five days. My mom and my husband still had not told me what had happened, I just knew where I was and that I was very, very sick. On day six I was moved back to a regular room.

Once again I was lying flat with minimal movement. I spent the next week and a half getting spinal taps as they tried to get all of the infected fluid out of my back. They finally had to put in a pigtail drain, which I wore for almost a week. I was finally able to sit up after two and a half weeks and then a couple of days later I was walking down the hallway. After over a month in the hospital I was discharged under the care of my retired parents, as my poor husband was having to work through this entire thing. 

Home-bound healthcare was needed to care for the PICC line I had in my arm to administer antibiotics twice a day. I did this for about 7 weeks until all of my lab results came back clean. I also did PT at home during this time. I was using a walker and learning how to use a cane. This was going to be my life for a while.

A year later, after aqua PT and regular PT, I still was not receiving relief. Walking with a cane was an every day occurrence, as walking caused pain and imbalance. I learned that the pain I was experiencing was a result of the vertebrae which were rubbing together because they were uneven because I had less than half of my disc left between them. This was causing the muscles around the vertebrae to have to work overtime and causing pain and muscle spasms. The sciatica I experienced before, the initial reason I went to the doctor in 2001, never went away and instead of just being down the left leg, was now also down my right. I had numbness all down the back and side of my left leg to the middle of my foot. This was regular, everyday life. I had to quit teaching in the classroom and was fortunate enough to find a job teaching for a virtual academy. 

The next step was to see a pain management specialist. I have been seeing him for about 9 months now. He has tried different transforaminal epidural injections, but to no avail. It's 2017, and as I type this it's 6 days after the 2 year anniversary of the major CSF leak that changed my life forever. My pain management specialist is fantastic and I wish I had met him before I met my neurosurgeon. I often wonder if things would have gone differently had that happened.

Now we are planning surgery in May to insert a spinal cord stimulator. Surgery for me means lots of antibiotics and trips to my infectious disease doctor for a release. I also had to meet with my neuropsychologist to ensure I was mentally and emotionally ready for this, because, as you can imagine, this has affected me in ways other than physically. I have PT twice a week and it is painful to the point that I am in tears oftentimes. I move around the house and go places as often as possible, but just unloading the dishwasher is an activity that warrants a nap because of the exhaustion caused by pain. I really love going shopping, so this is my exercise oftentimes, as long as I take breaks. My brain doesn't work like it used to, as I have permanent damage from the meningitis and high temps. I play the flute, but cannot much anymore because I become confused when reading the music. I teach high school English and oftentimes become confused when I'm lecturing. It also takes me twice as long to grade papers now. And, of course, I have my cane that goes everywhere with me. Life has drastically changed in the last 2 years and I am slowly adapting to it. With every anniversary of the 2nd surgery I hope I am a little further along in my recovery. Next year maybe I'll be walking without a cane!



  • SavageSavage United StatesPosts: 7,385
    hello teensmom !

    it is very good to hear how well you have recupererated from all you have been through!
    and good to hear you have a team around you to watch and try to,prevent such infection again.
    and to have care from neuropsychologist...very important! and good for you!

    you must be doing pretty well, ...back to work and such.
    its good you realize your limits..ex..dishwasher...and take the much needed time for rest.

    you may be interested to read....the spoon theory.....using search, upper right on page.
    so many of my friends and family, heck, i was better able to understand and accept my fatigue factor from pain.

    i want to wish you the very best with your scs in may.
    if you use the search on this site, you will find much information re scs.
    you may be led to current or older discussions.
    you may be led to the medical side with articles and videos. very informative!

    please click on link for helpful information!

    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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