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.
Another year arrives 2020
I honestly don’t know how I have made it this far. My husband, my health providers, and those that surround me with support and love. My health providers that I have seen on a continuous basis have been my primary Dr, Dr Rossetti, Dr Michael Hibner my pelvic pain specialist, my pelvic foot therapists, Barrows Neurosurgery, Barrows Physiology, Ian Goldman in Urology, Dr Brenda Schilk in GI, Dr Kutz and Dr Bruce Hamburg at the Core Institute for pain management who I truly believed have saved my life. If anyone bashed their pain Docs, they aren’t following what YOU want. You need to follow what they want and they have every best interest at heart. I have never abused or misused my medication and I have been under pain management for 6 years. I tend to underuse and that can send me to a very dark place. I have a team of mental health professionals that I began seeing in 2018. I could not spend my days sleeping anymore, I knew the trauma had...
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