Monday, August 13, 2007

Bedrest stinks

I may seem like a patient person but I'm really not, not when it comes to being on bedrest. I had another lumbar puncture on Friday because of ICP (intracranial pressure) problems and it was seemingly botched. They did it under fluoroscopy because of the tethered cord and tumor removal surgery I had earlier this year, which has left scar tissue at the site where LP's are to be done. Instead of using fluoroscopy to guide them properly, the neuroradiologist used it to go into my thoracic spine for the tap.

My CSF for some reason didn't want to flow, making it darn near impossible to drain the 20 cc's. After what felt like forever, the doctor made me STAND UP for the next ten minutes with the needle hanging there to see if it gravity would get the cerebrospinal fluid to flow. I instantly felt my head would explode.

When it finally ended, instead of following NY's orders and keeping me for awhile to monitor the drain's effect on my ICP and pain, they discharged me immediately and said to call them if I felt any better. I was floored. I was shaking and worried sick I would vomit in my friend Jackie's car on the ride home.

Yesterday the kids and I rode with Sterling early to church so he could set up the sound system. I lasted about 5 minutes before the vomits set in. I rushed home with the kids and breezed right from the garage straight to the bathroom. I never saw Jackie sitting on the couch. She came back to the bathroom, found me sitting there on the edge of the tub hovering over the toilet, helped me to bed, brought me OxyContin.

Today I talked to my RN in NY after sobbing in the bathroom again, filling her in. Definitely a CSF leak causing a low-pressure spinal headache, necessitating 24 more hours of strict bedrest, laying flat. If things aren't drastically better tomorrow I head to the hospital. I'm cheating right now, not QUITE flat but almost.

I want to thank the kind folks who have written me responses to this blog. I'd like to share my email, as I don't receive notifications of the responses and can't always make it here to read, I'm afraid, depending on my forgetful Chiari brain. Feel free to write at Margy--I am keeping your friend in my prayers. I sure understand the frustrations. I've been hospitalized for heart issues as well. Please do write. I am wondering if your friend has Empty Sella Syndrome from the CM, among other things. Write any time ok?

Take good care everyone. Must flatten out the rest of the way, getting queasy again. Blech.

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