Spinal Headache Update

Following the blood patch Wednesday, which was hoped to stop the spinal leak that was causing me such pain, I continued to have severe headaches with little improvement. Apart from the nausea clearing up, I was still bed bound. Finally Friday night I was able to sit up for a few hours and enjoy the company of some friends and by Saturday more than a week after the spinal tap I was able to be up for 3 hours which was a significant improvement. Sunday I went to church in the morning and was able to be up for about 3 hours before my body said enough.

Today I am free of the spinal headache which is a huge praise. When they had agreed to do the spinal tap they knew that the procedure could cause a worsening of the herniation from the Chiari. The reason being is that the brain and the spinal cord have a compartment of fluid surrounding it. This fluid stays fairly consistent in its pressure. When you place the needle in and draw out fluid you lower the pressure and can cause a vacuum like effect which can cause the herniation to increase. As well, if the place where the needle enters does not close up then you get what is called a spinal leak (CSF fluid is leaking out of the puncture site).

A spinal leak causes a headache that is indescribable. The only relief is heavy pain meds and laying completely flat. Even elevating my head on a second pillow was not feasible. This meant that for more than a week I had a lot of thinking time and a lot of TV time. Forget knitting or reading a book!

By God's grace I am free from that most recent challenge. I had hoped to try to return to work Tuesday but now I am dealing with a Chiari flare up. Now I am dealing with the classic Chiari headaches and a horrible deep aching in my legs that runs deep and I have difficulty finding relief from. On top of that I have started to have these crazy twitches that occur in any of my muscles at any given time. Sometimes I will sit there for a given period of time and it will just spread through the whole body. They picked up on it in the ER (at that time it was just in my legs) and did an EEG of the brain to make sure I was not having seizures. But since my spinal tap it has spread throughout the body and happens much more frequently. sometimes it will hit my abdominal muscles and cause me to completely seize into the fetal position.

I don't know that the Chiari has worsened since the spinal tap but it sure seems like it. The one good thing is that the hospitalization allowed them to run all the tests and clear any other possible neurological issue. But at the same time the spinal tap has possibly made things worse. Hopefully though I can have the surgery and be one of the 80% success rates and be done with all of this soon.