Baclofin and zanaflex don't work
I'm Bob from West Friendship, Md.
I have a c3-c4 incomplete injury. I'm 4 years out. I used to be able to walk 60 or so steps with the aid of a platform walker. Today all I have left is the use of my thumb on my left hand. I'm able to poke at my keyboard. I can also feed myself.
My tone has gotten worse over the past 3 years. At first baclofin and zanaflex worked some, but the tone kept getting worse. A year and a half ago,I had a baclofin pump implanted. Even though I had some success during the baclofin trial,the pump did virtually nothing.
Today I take 80mg of baclofin and 20 mg of zanaflex in addition to pump daily. I tried Dantrium; it did nothing.
My doctors at Johns Hopkins are stumped.
Have you ever treated anyone who didn't respond to baclofin and zanaflex? Do you have any ideas?
I am moving over the the appropriate forum (Care) for the current SCI-Nurse to respond to.
retusn- it sounds like the meds are not the way to go as I assume the pump itself was checked out that it was working correctly.
Have they done an MRI- check if maybe you might have a syrinx (outpouching of the spine- may increase spasms)?
If the cause of the spasms can't be found, a more drastic measure is to actually deaden the nerves via injections (botox/phenol). Or an even more drastic measure is to surgically disrupt the nerve pathway.
I should have said in my original post that I've tried botox 3 times with absolutely no results.
An MRI ruled out a syrinx.
Thanks for your response.
My husband gets accupunture treatments to help with spasticity, but he doesn't have spasticity bad enough to use medication. It helps some although not 100%.
Have you thought about trying electrical stimulation? Did your doctors suggest that? I hear that can also help reduce spasticity.
Wow..looks like you've tried about everything I can think of except for Diazapam (Valium)...tis wat I use when my clonus spasms drive me insane. But if 80mg of baclofen and 20mg Zanaflex (omg) doesn't work then diazapam may not either. When my spasms do get real bad I do smoke a little weed and they quit within seconds! It's truely amazing...maybe not 4 everyone tho. Best wishes...Ken