Another episode on 1/28, stroke like symptoms. I was doing well all morning, crafts for Brian and Michelle’s wedding, housework, phone calls, practicing piano. I was signed up for an art event at the library that evening. I showered and was ready for my piano teacher to arrive. As I went to answer the door my legs got week, could not walk straight, lightheaded and knew something was going south. I asked her to sit with me. I struggled speaking and dialed me husband on speaker, I then started repeating certain words “help”, “mom” “no”. Consistent with the 2 past episodes. I could not answer medical personnel’s questions appropriately as I would repeat and slur words. Phil was already on his way to meet me at the hospital. EMS had me loaded up ready to go and they let my music teacher head home. Once at Del Webb it was quite a blur. They spoke with my neurosurgeon who was in Chandler Barrows for the next couple days and wanted me transferred there. So by ambulance there I went. I sat uncomfortable in a gurney in the hallway for 18 hours. All my meds were off routine. And I don’t just mean pain meds. (I am not a junky). I mean meds so I don’t get backed up). I take topomax which can cause seizures when missed. I was not in a good place or comfortable at all. My husband was sitting in a hard chair. There was much confusion with orders and imaging. I did get the important imaging done. After that I had to make a tough decision to leave against medical advice. My health was at risk there. I had a catheter in which affects my bladder. I was sitting in a Petri dish of germs, with a very low immune system, compromised my medication I take. I was not able to eat or drink, it had been 24 hours. And the gurney I came in on was not where I should have been placing more pressure on my spine. They did the Myelogram, that’s truly what I needed. I never saw a Neuro doc. I have an idea of what happened: I was just on a steroid dose pack for an allergic reaction to sulfa. So I felt like superwoman. Doing things I physically would NEVER do. Lifting, walking, etc. it then caused inflammation in the cauda equina and nerve roots In the thecal sac. This is from the adhesive arachnoiditis from the initial spinal cord injury in 2013. It causes more inflammation and impedes the cerebral spinal fluid flow to the brain causing stroke like symptoms. This is a sister diagnosis to MS in the sense of the swelling of the spine. I could not move my legs due to the pressure and swelling in the lumbar area. This is now the 3rd time it has happened. After rest and more IV steroids it does subside. I felt I would get more rest and proper care at home. I could not lay there anymore.
As I Wake...
Surgery is meant to heal, to fix you, you expect to wake up and be better than you were before. Waking up for me was a nightmare, it was absolutely traumatic. As I woke, my legs were extremely painful, I could not move them. I was unable to urinate by myself. I was not thinking clearly, I was confused. My pain was so much worse than it was before, it was indescribable. I was unable to verbalize much of this at the time. The Dr's did evaluate me for a stroke, if I could go back and slap each and everyone of them I would. They were clearly looking in the wrong place. Every single bit of my symptoms pointed to a spinal cord injury, and if, and only if they would have noticed immediately could something have been done. Am I angry? Yes, I was, I have had to go through an emotional/mental healing process. An ongoing one for over 3 years and one that will last a lifetime. I suffered severe trauma physically. I tried so hard to let someone know but nobody listened, that kills...
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