“Pain, pain … Go away!”


Regular readers will know that I suffer from recurrent, severe neuropathic pain as well as allodynia in my arms and hands that feels like having a broken glass bottle ground into my forearm.

On bad days, the pain completely derails my participation in the innovative rehab program I came to Kunming for in the first place.  And when the pain is high enough, I can’t sleep at all without prescription sleeping medication like strong benzodiazepine-class drugs.

Reducing neuropathic pain had, of course, been a secondary but nonetheless key objective of my recent neurosurgery with Dr. Liu.

The top surgery priority, of course, was to attack the large (3 cm) and growing cyst inside my spinal cord that was beginning to interfere with my breathing and likely would have had me on a ventilator within a few more months.

My breathing is fine again today, so chalk up another surgery masterpiece to Dr. Liu and his team.

Unfortunately, the frequency and severity of my pain are essentially unchanged since before surgery.

“Sometimes untethering helps with pain, and sometimes it does not.”

Great!  😦

Wonder why the untethering surgery did not reduce my pain + what else I could do now?

Well, trying to answer this question is what has recently led to both my Dad and me stepping up the amount of time and energy we devote to global pain research.

While pain research is obviously neuroscience, clinical pain management has a very different cast of investigators and academic literature compared to, say, regenerative medicine.

So upcoming blog posts will report on what we learn about better management of neuropathic pain, and eventually I’ll group the pain posts in a separate tab here, as I did for my surgery.

Today I’m just laying the groundwork.

A recent U.S. Government-funded study reported that 75% of SCI survivors suffer from long-term neuropathic pain.  But Dr. Wise Young (M.D., PhD) from Rutgers University, a renowned expert on SCI,  says that just 15% of SCI survivors suffer pain levels severe enough to be debilitating on a daily basis.

One possible explanation for this is that if the original source of the pain is not relieved within a few months, the spinal cord appears to get imprinted with pain memory that sticks even when the original source of the pain is relieved.

Maybe think of this as the dark face of neuroplasticity!

In an upcoming post, I’ll be explaining the first thing we’re going to do to see if we can at least turn down the volume on this pain memory without resorting simply to addictive painkillers.

Meanwhile, my injured right knee is well enough again for me to have resumed the walking program on a limited basis.

4 responses »

  1. Ali,
    So happy to hear about your knee and your continuation in the walking program. So sad to hear about your continued pain levels. It is fascinating to learn how the spinal cord can become imprinted with the pain memory. If there is some way to be discovered to help relieve that level of pain I know that you and your Dad will find it. I continue to keep you in my prayers and send you only good thoughts and surround you with healing white light. Your perseverance is truly amazing. Hugs and kisses, Christine

  2. Ali,
    Bill Hazen here, father of Will and Laura, from Wilson Bay, Cat Island. I have met Ushi as she came north and performed her selfless service to the seniors of Cat Island, but have never met the rest of your family. Our family follows your blog and we are all hoping for your pain to go away.

    I have a seronegative spondyloarthropathy with multiple arthritides and chronic pain, not at your level but I can relate to how disabling pain can be and am still searching for “the cure”.

    In one of your blogs you talked about Traditional Chinese Medicine. I am an equine veterinarian and studied Traditional Chinese Veterinary Medicine with Dr. Xie at the Chi Institute in Florida.
    One thing I have learned in using TCM for my own condition is that there are, just like any profession, some that excel at it and some you just don’t get any results.

    I would think since you are living at its birthplace you should be able to find a TCM master, perhaps one of the TCM researchers or profs at one of the TCM schools.

    It does work on many painful conditions, unfortunately not all but I think it would be worth looking into. The acupuncture can do no harm and the herbs usually have no serious side affects.


  3. Hi Ali,
    I’m still rooting for you. I’m so pleased your knee is on the mend but so disappointed for you that the surgery did not reduce your pain. Sending big hugs of encouragement. Tania and Fifi. xxx

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