Just Walking is Hard to Do

While the vast majority of my spine surgeries have been on the c-spine (cervical), I did have surgery for Tethered Cord Syndrome (my form of TCS is also referred to as tight filum terminale) that was a bit difficult to fix thanks to a benign tumor getting in the way of everything.

For the last week I have been having excruciating stabbing pain in my lumbar region, and it has worsened daily. It has become severe enough that my DH took the last two days off work without telling me beforehand because he could see how badly things were. These last two days have been extreme in terms of pain and limited mobility. If I try to move my upper body just a couple of inches in any direction, the screaming pain makes itself known. Leg movement does the same, so walking must be done with great caution and only with small and the slowest of baby steps.

Yesterday I called the spine doctor I see here in Tucson for an appointment (I see him when I want an opinion on what my neurosurgeons in NY say) but he cannot be seen until Tuesday. I called back today and there is just no way around the wait. In the back of my mind I am afraid of there being damage to the area that was worked on for the TCS. Will I do permanent harm if I wait until Tuesday? I hate going to the ER but in the back of my hole-y head (must maintain humor, & thx to my permanent craniectomy I DO have a hole in my head) I can't help but think this time it might be warranted to make sure the EDS isn't making the spine deteriorate any further.

Ehlers-Danlos sucks.

MRI Results

I went to the doctor yesterday and he already had the MRI results from the day prior. The same as most docs, he does not view the images himself and simply goes by what the radiologist says. For that reason, a cd of the MRI is being sent to NY today for review since local docs often can't tell their head from their ass end when it comes to things like this.

My L4-5 are out of place and pushing into the spinal column, thus the referred nerve pain in my left leg. I'm not a surgical candidate as I barely have any L4 left after last year's detethering which involved not only cutting the filum terminale (sending my cord flying up an instant record 2 inches), but also extensive laminectomies on L 2-3-4-5 to get to FT, first requiring removal of a tumor directly on top of the area getting in the way.

I also started a sleeping pill for the first time. I told doc lack of sleep is nothing new for me but I can't much longer handle the 2 hours a night, that I find myself way too emotional and on the edge in the day time any more and I can't keep doing this. I took the first one last night and what do you know but I slept until 4 a.m. today! Sure beats 12:30 or 2.