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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Tuesday, February 19, 2013


I have not written about my personal journey.

One of the sites I frequent has some discussions ongoing about pain, pain treatment. 

A few of the professional folks there espouse, strongly and without room for doubt, that chronic pain is the result of unresolved childhood conflicts or a body response to the need for better nutrition, hydration, and other homeopathic remedies. 

They believe this regardless of the cause of the pain, unwilling to accept the reality that our bodies do have problems that require surgery, medication, other treatments, and may be unresolvable but hopefully still have the ability to be helped.

I am a big believer in an anecdote does not a population make.  That being said this is what has been tried to help me with my pain*:

Non Jannetta Procedure MVD (a specific form of decompression using a pad placed between the trigeminal nerve and an artery or vein that may be pressing against the nerve)  decompression left posterior fossa 1977 successful 99% for 3 mths.
Dozens of tiny vessels found throughout the area, from a partial birth defect called Sturge- Weber - Wyburn Mason

(Blood vessels grew back and 3 months later pain returned)

marcaine rhizolysis 1978 - no benefit (Killing the nerve, temporarily, with a novocaine type drug)

thermocoagulation rhizolysis, no benefit, addition pain V3, loss sensation V1, V2, V3, injury 44% to N.7 and damage N. 9 (99 +% resolved)  (Killing the nerve with heat)

Jannetta Procedure (MVD) – no benefit, 100% paralysis (L) face Dr. Peter Jannetta

non MVD decompression posterior fossa (area of the brain) slight benefit

trigeminal tractotomy – approximately 5 year cessation spontaneous pains, side -effect- slight infrequent slight balance problems have persisted (Killing the nerve at the root)

Dorsal column stimulator implant – 85% benefit, (implant in the neck)

removal dorsal column stimulator implant 1986 infection (unrelated to implant)

Dorsal column stimulator implant – no benefit,

removal dorsal column stimulator implant 1987 infection (unrelated to implant)

(A,P clamps C2 – C5 (12 screws) 1998 Kyphosis (my neck "fell down") (2nd to laminectomy prep for trigeminal tractotomy 1980 - going through the spinal column to get to the brain))

sensory cortical stimulator implant 20 – 30% benefit 1991 (Implant attached to the covering of the brain)

(Failed in 2012, not sure why, currently remains implanted, have turned back on, waiting for benefit they have history of taking up to a few months before see a benefit.)

I have also been tried on many drugs including, but not limited to: tegretol, gabapentin, prolixin, elavil, prolixin and elavil in tandem, percodan, demerol, morphine, tincture of Opium, hydrocodeine, cymbalta, lyrica, haldol, reserpine, depakote, depakene, dilantin, vasodilators, baclofen, and many others. (been so many years since inception no longer recall many of the names)

It never hurts to eat better, to drink more liquids, to try alternative therapies.  I have no problem with those who say "Have you tried (acupuncture (which I did to no avail), hypnosis (which I did to no avail), chiropractic, relaxation techniques, homeopathy meds, etc.?"  I do have a problem with those who say this is all that is needed to treat chronic pain.

It is not.  There are way too many of us to prove that thesis.

What do you think?


* (It would take way too much space to define all the terms so I will not but if you have questions I am happy to try and answer them. These are all brain surgeries.)
Trigeminal neuralgia has 3 areas, the forehead and eye and slightly under, That is V1. V2 is under the eye to midway tdown cheeck and V# middle of cheek to jaw. It is one sided although some can have it on both sides. Mine is on the left side V1 only.


  1. Oh my goodness, I am SO sorry to hear of everything you have been through!!! THANK YOU for taking the time to lay it all out for those who think that it's "all in our head", or that we are "merely depressed", or any number of other very dangerous dismissals of very real issues. Because we often look "fine" to the outside world (many of us have become masters at hiding our pain), the world thinks we are fine.

    There are times when physicians can make things worse. Just as there any number of alternative therapists who allow very serious medical conditions to go on without proper medical treatment. I guess until more research into complex pain is done, and more training is provided to medical students on chronic pain, we will somehow have to learn how to become our own advocates.

    My heart and prayers go out to you.

    1. Thanks Kristina.
      I think that is one of the most important things we can do for ourselves, to be our own advocate.
      I will be writing more about it but having a proven istory does not necessarily mean you are believed. It is one of the crosses of our having an "invisible' disorder.

  2. I found a link to your blog on LinkedIn.
    As a 12 yr chronic pain sufferer I stopped using opioid medications and muscle relaxers in 2011. They just no longer work for me. Over time I experienced various side effects, ex: additional pain, cravings, anxiety.
    These days I follow an alternative treatment which allows me to live my life.
    The only medication I'm taking these days is Trazodone.
    As many of us know, chronic pain is not a cookie cutter condition. What works for one may not work for another. I'm glad that your pain management plan works for you.

  3. Hi BerryMorins...
    I'm glad you found it.
    It is great we can reduce the amount of meds and Im glad this is working for you.
    Thanks Carol