Medical Update: Baclofen Pump (part 1)

I get a fair amount of e-mail about my "Botox bladder miracles" post. It is from other people who are considering having the same treatment. Describing medical adventures is a strange way to make online friends, but it's also rewarding. It is one of the ways I can be of service in this little strange life I lead.

Next Tuesday, I am due to have a test to see if baclofen will ease my spasticity when it is injected into my spinal column. It is the penultimate step toward getting a Baclofen Pump.

My rehab doctor and the nurse practitioner who works with her have both remarked that my level of spasticity is one of the highest they've seen. I am usually happy to excel at something; this is an exception. The best way Ralph and I have found to get my legs to bend is to stand me on them and lean the back of my knees against something until the eventual collapse. That would be on days when my legs have decided to extensor, rather than flexor, spasm. Every now and then we have a flexor day. Those are worse for me because I'm afraid my weight, dangling with my arms wrapped around Ralph's neck, is going to totally wreck him.

I have my feet strapped to my wheelchair foot rests with Velcro ties to keep them from kicking. I wear my wheelchair seat belt all the time. Without those two precautions, I would spasm right out of my chair.

Last week we took delivery of a Hoyer lift, which now stands like some truly ugly sculpture near the door of our living room. It will fit into the bathroom, but I'm not sure how we will manage to use it. The fact that we haven't used it yet leads me to suspect it will not be our favorite option.

The nurse practitioner asked me what I hoped to get out of having a baclofen pump. I've recognized this as a trick question: she was checking for realistic expectations. I told her I hope to be dancing down the hallway, but reassured her in the same breath that I know that won't happen. My dearest hope is that I may be able to transfer independently again. I'm afraid that is about as likely as the dancing scenario. More likely, I will be in less pain and spend less time and energy fighting involuntary movements of my body.

The first step in this process was to try to combat the spasticity with increased dosages of oral baclofen. At the doctor's advice, I slowly increased my baclofen dose until I was taking 80 mg a day. We didn't notice a difference in the level of spasticity, but I did feel sleepy and stupid. I slowly tapered down. At too low a dosage, I started noticing that leg spasms would jerk me away from my desk (and my mouse) a couple times a day. I was also waking up more often during the night. I have settled on 10 mg three times a day and 20 mg before bed.

There was another medication we could have tried, but the rehab doc was as unimpressed as I was with my body's response to the oral baclofen. We skipped that experiment and are heading on to the intrathecal test.

[View Baclofen Pump Part 2]