Phantom pain/ Real or Not?

[t-barr at t-barr.com]

Thom thanks for your comments below which I largely agree  EXCEPT:

Surgeons are responsible and morally obligated and code of ethics obliges
them to deliver the best surgery methods to prevent unbearable pain,
imagined or not.

My father was fortunate enough to undergo the Ertl procedure and
subsequently had many years of pain free mobility.
Dr. John Ertl whom performed the procedure has been a Barr Foundation
director member for 30 years!
My father's  wish is that every amputee, prosthetist and surgeon learn the
benefits of the Ertl Procedure :Osteomyplastic amputation and
reconstruction.

Since limb amputation are not as glamorous, nor as profitable, as other
types of amputation surgery,i.e. hip replacement, breast or lung
removal,etc.many don't take the time to do it properly and when faced with
limb amputation often hand it off to inexperienced interns and more commonly
vascular surgeons whom know very little about osteomyoplastic surgery and
bone reconstruction..

Prosthetists often offer to support to phantom pain dilemma as a as a
prosthetic fitting caused problem, when often times it is not.
You would think, with over 3,000 amputations being performed in this country
every week, they , prosthetists,insurers,etc.,would see the benefits in a
procedure that has been around along time.
" Prevention cannot be overemphasized!"
Keep up the great work.
Tony

-----Original Message-----
From: AMP-L-owner at u.washington.edu
[mailto:AMP-L-owner at u.washington.edu]On Behalf Of Thom Bloomquist
Sent: Monday, September 29, 2003 7:56 PM
To: Amputee Information Network
Subject: RE: Phantom pain/ Real or Not?


..

But ask any amputee whom has experienced it and it's real enough to them to
cause stump pulsation, rise in body temperatures, and real sensations of
having limbs where it is now absent.
Some resort to thinking the problem is the result of a improper fitting
prosthesis, or may resort to taking heavy pain medication and on occasion,
considering suicide as my father did.

Tony Barr
Barr Foundation
www.oandp.com/barr

Tony,

I am sorry to hear about your father.  The sad truth is pain has been poorly
understood and treated in the past.  For a long time (and still in some
places) it was thought that infants did not "really" feel pain.  This was
the rational behind circumcision without anesthesia and correcting minor
heart defects without anesthesia in infants.  I remember well the kids on
the polio ward (myself included) screaming in pain after surgery and being
told, "John Wayne doesn't ask for pain medicine!"    We now know this is
cruel and barbaric.
As to improper prosthetic fit contributing to phantom pain; this,  in fact,
makes a lot of sense in my mind.  My understanding is that phantoms arise
from a changed nervous system.  Changed in the brain, at the spinal cord
level and at the very end (periphery).  The pain sensors become more, not
less, sensitive, in response to on-going pain - in most people.  We can
always find some extraordinary soul capable of little or no pain or
suffering but they are the minority.  Because the nervous system IS more
sensitive after injury and amputation - anything that stimulates the
residuum - can play a part in phantom pain, including the prosthesis.  That
is not to say that the entire problem is in the stump, again, it's also at
the spinal cord level and brain level.  Its all connected and the changes
are at all levels; all pieces of the same puzzle.
Case in point, I have been fortunate enough to not have much phantom pain in
the 7yrs years since surgery.  My CPO has made a new trial leg, which
includes more pressure at the end.  For the first since my amp, I was
incapacitated by phantoms.  He could not know this ahead time, neither did
I.  He was (and is) doing his best to help and has redesigned.   I went back
to old leg which uses little-to-no distal pressure and phantoms went away
within day.  In this case, and I suspect I am not alone, a sub-optimal fit
did contribute to the phantom pain problem.  The effect was immediately
reversible - leads me to think in a terms of a cause and effect
relationship.  I am not saying and do not imply that prosthesis fit is
biggest or only factor in phantom pain but it is a piece of the puzzle.  So
you can think of prosthesis fit as a potential problem or you can look at it
like I do.  The prosthesis fit and CPO are critical elements of my pain
management therapy.
Sorry to hear about you dad.  I am doing all I can to prevent such
suffering.  This why prevention is SO important.  This is why we need to get
the word out there.  Treatment of phantom pain is so difficult.  To quote a
world class pain management expert,  "Because of the low success rate of
treatment in chronic phantom limb pain, .... prevention cannot be
overemphasized" - Dr. Prithi Raj

Thom Bloomquist


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