For the past 2 weeks I have driven daily to Mayo Clinic in Rochester to take part in a clinical trial for treatment for Chemo Induced Peripheral Neuropathy (CIPN). Today was my last treatment, and here are my observations:
CIPN is a tough nut to crack! It does not respond to treatments that other neuropathies seem to respond to, such as acupuncture, medications, or supplements. Until now, I have been told that there was nothing that could be done for the symptoms—constant tingling, numbness, stiffness, and pain.
Recently the US has become interested in testing Scrambler Therapy for CIPN, since this type of therapy has been successful in treating other types of chronic pain. It has been used extensively in Italy and Korea since the 1990’s.
Through a randomized choice, I was selected to receive the Scrambler Therapy (as opposed to the control group who received TENS therapy). Both are electrical stimulation, but Scrambler is much higher frequency and reaches deeper into the nerve fibers.
The theory behind Scrambler is that is can retrain the brain (scramble the messages coming from the nerves) to receive signals that are NOT painful. This is done with pads placed on strategic points on the feet (and sometimes the hands), and then the electric current is turned up as high as can be tolerated.
I began feeling some changes—a lessening of the numbness, tingling, and pain—within a couple of days. It only lasted a few hours, and then I was back to square one. However, beginning about treatment #6 or 7, it was lasting several hours…and finally lasted overnight.
The treatments did a couple of other things to my body: I became very tired—pretty exhausted, actually. The nurse explained this as the brain having to work very hard during treatment, receiving, translating and attempting to retain messages that are new and different.
The second thing I noticed was a heightened sense of depression, mixed with some anxiety. This also makes sense when you think of the chemicals in the brain that become out of balance when we are depressed or anxious. I’ve had a low level of depression for many years, which is managed nicely by a low dose of an antidepressant. But when all this new activity kicked into my brain, it likely threw the chemical balance out of whack as well. Both of these things—tiredness and depression—I expect will subside now that the treatment is over.
“Success” in this trial is defined as a 50% decline in symptoms from the first day through the last day. In those terms, I have had a successful treatment. My symptoms are not gone, but they are reduced. I still have tingling, numbness, stiffness and some pain, but at this point it is probably half of what I had prior to treatment. The unknown is this: how long will it last? For other kinds of chronic pain, the symptom relief has lasted for years. For CIPN, it has not been used long enough to know the lasting effects.
I send a weekly report to Mayo for the next 8 weeks, where I rate the symptoms each week. Two weeks ago I started with numbers in the 4-6 range. Today my numbers were 1-2 during treatment. At this moment (7 hours after treatment), they’re at 2-3. If they will stay anywhere in the 1-3 range, I will be thankful for that amount of reduction!
After 8 weeks, if I choose to do so, I can do another 2 weeks of the control therapy, (the TENS therapy), which is similar in how it is administered, but is a much lower electrical frequency. If I still have symptoms at the 8-week point, which I expect I will, I plan to do the TENS just to see if I can get further relief.
And, I still have one more option. If my symptoms return to the 4-6 level, I can be referred to the Mayo Pain Clinic where I can receive “booster treatments”.
There was a little (well….maybe it was bigger than I want to admit!!) part of me that was really holding out hope for a “cure”—a complete reduction of the neuropathy, a return to normal-feeling feet…even a return to ‘pretty shoes’. The cure didn’t happen, but I have bought a new pair of ‘pretty’ shoes that I hope to wear more often that I’ve been able to in the past.
Bottom line: I’m very thankful for this opportunity to take part in the clinical trial! I had excellent care from the nurses who administered the treatments. At this point in time, I have a reduction in my symptoms which is something I did not think was possible. And even if the symptoms increase again, I have further options. Life is full of good things and good people!
P.S.: So many people have shown an interest in this therapy since I started talking about it. To learn more: Google “Scrambler Therapy”.