Consultation with the pain doc

We met this morning with Doc E, an anesthesiologist who works in pain management. He went over some of the options for managing Alan's increasing nerve pain. If we had an epidural, that would add another line into him, along with another dressing that would need to be changed regularly and another pump. Because this pump would be handling a local anesthetic as well as painkiller, Doc E has had difficulty finding home health care companies that are willing to manage it.

The second option is a neurolytic lumbar spinal - basically a lumbar puncture during which they would inject alcohol into his spine to "burn" the nerve. The advantage of this option would be that there would be no additional lines or equipment. It may wear off over time but could be repeated as necessary. The disadvantage is that it is not done in children often so there is very little data on dosing levels for the alcohol. Doc E is very confident in his ability to do the procedure, and frankly there is no one else in town that is even remotely qualified (or willing) to do it. He freely admitted that if we decide to go with this option he would be consulting colleagues at the Children's Hospital in Tennessee and doing further research. We also put him in contact with Doc H2 so he could consult with the pain docs at MD Anderson who had suggested a similar procedure this summer.

The decision was fairly easy to make. The spinal would leave Alan less encumbered and if it worked would allow us to enjoy Christmas and maybe make the New Year's Eve fireworks - goals that Doc E said were very attainable. We considered the downsides of the treatment - loss of mobility, bowel and bladder control were things we are already dealing with. To us, the biggest downside is if it doesn't work since Doc E said he would want to be conservative (because dosing information for patients as small as Alan is not well researched).

Doc E's office will start working on scheduling the procedure. Hopefully it will be quick since Alan's pain is getting more and more difficult to manage.