Saturday, March 03, 2007

Into Recovery mode

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First off, thank you for the thoughts, prayers and encouragement. The last month has been a very trying time, to say the least, and I deeply appreciate you all.

This post is going to be pretty short on details as it's still painful to type. I will attempt to give an update though.

I have been through an extensive battery of tests during the last two weeks and here is what we know: virtually nothing. I still have much lowered sensation in my entire body from my shoulders down. My hands are in constant pain as though every nerve is raw.

Last Friday, I had a spinal tap...the procedure went well (as well as they can) but because of the enormous amount of inflammation in my spine; the tap refused to heal, leaving me with a spinal tap headache that prevented me from sitting upright more than 15 minutes at a time. To stop the spinal fluid from continuing to leak, the neurologist ordered a procedure called an epidural blood patch. It's a difficult procedure but one with an incredibly high success rate.

It was horrendous. No, horrendous doesn't begin to describe the pain actually...the anesthesiologist didn't wait for the anesthetic to set in before he jammed the lumbar puncture into my spine. I actually felt each nerve bundle he hit before Grace (who was right by my side) realized how much pain I was in and told the doctor to wait. I wasn't even able to speak. By the time it was over, my whole body was convulsing in pain.

The agony was apparently worth it as the blood patch was ultimately a success and I can once again stand and sit for more that a few minutes at a time. There is still quite a bit of trauma to my spine (both from the inflammation and from the two procedures) but the muscles and nerves are healing.

With this step behind me, the massive doses of steroids being pumped into my body are finally beginning to take effect. I have a little more mobility, control and feeling in my toes and sensation is starting to return to my ankle and knee joints.

The steroids are causing their own issues in my body, but one step at a time. If they can just get some feeling back into my hands, I can at least return to work. I am so not couch potato material.

I have an appointment on Wednesday to consult with both my neurologist and a rheumetologist and hopefully they will have some ideas. The test results so far have been as confusing as they have been inconclusive. At this point, I am negative for meningitis and multiple sclerosis, brain tumors or additional lesions in my cervical spine. They are once again suspecting systemic lupus; but the results have been conflicting and it still doesn't fully explain the transverse myelitis.

Again, thank you all for your support. I love you all deeply.

MOH, you definitely rock the casbah. L&L

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