So we turned the conversation to quality of life. The symptoms need to be controlled in the following priority order:
- Unbearable pain from waist to toes.
- Worsening loss of manual dexterity.
- Stabilize weight
On Tuesday, we met with the pain doctor. He and the neurologist recommend a spinal cord stimulation trial as the next logical step to control the pain. In the trial, they will insert two electrical leads into BR's spine, and attach them to a controller that will deliver pre-programmed electrical stimulation which should block the pain signals from being transmitted to the brain.
Here's where I get a bit doubtful. MS has been described to us as making the damaged nerves "act like crossed wires". A signal that was traveling up one neural pathway degrades in quality, and can actually end up on a different pathway. Given that the majority of BR's lesions are in the cervical spine, I'm having a hard time understanding how stimulation of the lumbar spine will help. I asked the representative from St. Jude Medical to provide any data they have on the effectiveness of SCS on MS patients.
Then I started digging around on the internet. Studies that I found show between 50 and 75 percent of MS patients who try SCS get symptom relief, but the one study that broke it down by the level of disability showed that patients who are already in a wheelchair are much less likely to benefit.
I guess we need to continue to think positively. Even a 50% chance of pain relief is worth a trial.
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4 comments:
Really hope it works as constant pain is the pits!!!!!!!!!!!!!!
Im thoughts with you both.
Take care.
Lots of love,
Herrad
Do you ever get the feeling the doctors are hearing you but not listening to what you say about BR's pain and daily functioning? I get that impression from reading your posts.
Regardless, fingers crossed that this next step proves to be a worthwhile endeavor.
Love you guys,
Kimmie G. :-)
Hey, I had electrodes in my groin and while it didn't really work to help the pain (hernia surgery gone bad) it was quite a life experience. Try to keep on the sunny side cuzzes. On a sad not, not sure where my martini hat is? Oh, the horror.
I hope that you fall into the 50% who see positive benefits!! Anything to take the pain away and perhaps make room for an improved quality of life.
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