Re: Amputation as treatment for RSD - REPLIES

Re: Amputation as treatment for RSD - REPLIES

This is what I heard back in answer to my question about RSD and Amputation.
 
I will be saving the answers to a PDF file for future reference through my
web site.
 
Thank you to everyone for replying.
 
Al Pike, CP
 
 
 
Amputation and RSD
Al,

I have one client with a recent, so far successful TT level of amputation
because of RSD in his ankle. I know he would be more than willing to speak
to the person you are referencing.


No. No. No.
As a physician dealing with the tragic effects of RSD/CRPS over 30+ years
amputation can be the worst risk possible. There possibly have been an
occasional person who may have gotten away with the amputation without significant
spread or worsening - but the pain of RSD is not in the arm or leg that is
removed. The patient will continue (most likely) with the same pain or pain that
will be somewhat like phantom pain is like. The source of the pain is in the
more proximal areas of the nervous system (spinal cord, brain) and not in the
amputated extremity. So while the pain is perceived in the hand or foot,
amputation will not remove the pain (like phantom pain) but only provide more
sources of timulation for the RSD.
When the current standards treatments fail, newer treatments may be of help.
I have had the opportunity of working with a new low level laser treatment
(Halolaser) with good results. The basic steps in helping the patient decrease
pain and increase function are to assess total medical and nutritional
status, reduce medications and increase function.
One last form of treatment, that I have not had experience with is being
done on an experimental basis in the Phidelphia area. This apparently involves
putting the patient under anesthesia for days while additional treatment
elements are used.
Good luck
Charles R Crane, MD
Dallas, Texas
<Email Address Redacted> (mailto:<Email Address Redacted>)
PM&R, Pain Management
Dear Sir:
I have been a chronic pain, RSD specialist in Sacramento, California for
several years. I wrote an article on RSD for the Journal of Care Management
which can be found at:
_ <URL Redacted>
( <URL Redacted>) .
Amputation is contraindicated for RSD. It is a problem with the sympathetic
nervous system..it has very little to do with the actual pain. A physician
that would even consider that would be very dangerous.....If you need other
information go to the RSD.com or Chronicpain.com websites.
Dorajane Apuna BSN MA RN CCM CNLCP
Nurse Consultant/Life Care Planner
Case Strategies
5035 Date Avenue
Sacramento, California 95841
Ph: 916 344-4844
Fax: 916 344-4346
you need to look into the use of the electrical stim implant and the of Low
Level Laser to manage and break the pain cycle. The use of a TENS unit at
the level of the spine as a trial test to see if the implant will work. The
option of partial nerve ablation should be an option.
<Email Address Redacted> (mailto:<Email Address Redacted>)
Al,
My experience with RSD and amputation is that it follows the amputation
site. RSD in foot and ankle, amputate, now pain in the residuum. I would be
interested in what you find out.
Don Holmes, CPO
DO NOT let them have an amputation. It will be a disaster!!
No if's, no but's, just no amputation!

Regards
Andrew Cox
Prosthetist/Orthotist
Orthopaedic Appliances (Bendigo) PtyLtd
PO Box 158
Golden Square
Vic 3555
Ph 03 5454 8752
Fx 03 5454 8756
yes you can and I can tell you about the RSD case we had here. Twisted
ankle>RSD>non weight bearing 2years on crutches> dependant oedema+++> could not
apply compression>ulcers and fluid literally leaking onto the floor>tt amp>
was OK for a while> fitted prosthesis> stump fluctuations+++++.RSD of stump>
could not touch so could not apply compression>oedema+++> ulcers and fluid
dripping out the bottom of stump> epidural for stump revision> foot drop oposite
side(yeah great!!)> TF amputaion> due to pain she would sit leaning away from
amputation> spinal problems, pain +++(no-one would say but you could have
called it RSD of the back)> morphine pump implanted to relieve pain. Hows that
for a story?
I understand that there is a general concenous that there are always
underlying psychological problems and that maybe this should be investigated first.
I believe our lady also had a bad homelife and abusive husband but also I
think there was some molesting or something of that nature when she was young
that had never really been delt with.
I am unaware of any successful outcomes for amputation due to RSD. It always
seems the problem just goes up higher.
I also think the team here believe they missed the boat by not having psych
assessment very early on in the situation but I (and them) also think they
were inexperienced and a bit nieve when treating it.

Regards
Andrew Cox
Prosthetist/Orthotist
Orthopaedic Appliances (Bendigo) PtyLtd
PO Box 158
Golden Square
Vic 3555
Ph 03 5454 8752
Fx 03 5454 8756
Hi Al,
Without going into detail - a strong suggestion is to become a saint
when it comes to nutrition. I have been studying and practicing cellular
nutrition for some time now and have cured a shoulder injury that three
orthopods strongly recommended surgery as the only cure. That was 7 years
ago and I have not had surgery, and I am able to do everything I want
including a 5-day weight-resistance training program - for life. I have
helped patient/clients to reverse many maladies they have when they come to
see me for their prosthetic care - such as insulin dependant diabetics. One
case from Chicago is of a 73 YO woman, brittle diabetic, taking 26
medications and was fundamentally a zombie. Granddaughter and daughter heard
of me and I saw her. They told me that the 4 doctors in Chicago that were
caring for her advised the family to sell her home, move into assisted
living, she had failed at prosthetic rehab, and therefore she would be in
the wheelchair the rest of her life which would not be that long - because
of her deteriorating conditions caused by her diabetes. I told her and her
family that her prognosis is classic textbook - if she continued doing what
she was doing the first 73 years of her life and specifically the past 25
years. To shorten this story, she and her granddaughter wanted to change her
outcome to something more positive. I laid out a regimen of nutrition
[macronutrients], supplements [micronutrients], drinking 1/2 her bodyweight
in ounces of STEAM/VAPOR DISTILLED WATER PER DAY, and a progressive home
exercise program. I instructed her to seek out a physician in the Chicago
area that is a specialist in diabetes, and nutrition based. In 4 weeks and 3
days she called me to tell me that her blood sugar was normal and near
normal on several testings. She was more alert, stronger, felt more alive
than she had in years, and could do ~35 wheelchair push-ups/ I said when you
get to 50 push-ups call me and you will be ready to begin the prosthetic
rehab phase again - and this time you will be successful! She was and live
13 more years and drove her car and stayed in her home!
So - - I again recommend nutrition. I'd be happy to offer my
knowledge and refer her/you to medical specialists in this expanding area of
nutritional medicine.
Here's what I have learned about RSD taken from a number of friends,
Dr. Michael Colgan, Dr. Ray Strand, Dr. Ladd Mc Namara, Dr. Christine Wood,
and others - I have had two cases, both before I became knowledgeable in
cellular nutrition and Ertl surgery helped but did not eliminate the
symptoms.
Reflex sympathetic dystrophy (RSD) is a regional pain syndrome that
usually develops after some type of tissue injury. Characteristics of RSD
include: spontaneous pain, exaggerated pain in response to mild stimulation,
and simply being hypersensitive in a particular area. This syndrome may
become disabling and frustrating. The underlying cause of RSD continues to
be a mystery.
There are many medications and treatments available - injections of
the nerves (stellate ganglion block). None of these treatments, however, are
known to bring lasting or consistent results [according to a number of
specialists]. Many patients turn to alternative approaches in an attempt to
decrease their pain.
Significant studies are not available in medical literature
addressing nutritional supplementation in the treatment of RSD. Therefore,
only anecdotal evidence can be offered in support of nutritional supplements
help reduce or in some cases relieve this disorder. It is recommended that
patients continue with these recommendations for at least 6 months.
Macronutrient recommendation is to maintain low glycemic load meals,
with a good balance of carbohydrates, proteins, fats - preferable organic
foods.
Nutritional Supplement Recommendations:
It is recommended that patients take the basic nutritional support now
referred to as cellular nutrition. This foundational regime provides all the
necessary micronutrients to the cell at ideal levels (not RDA levels) for
significant health benefits as documented in the medical literature. When
the cell is given maximum support, it can then determine what it does and
does not need. Over a six-month period each cell is able to not only
overcome nutritional deficiencies but also to optimize ALL the nutrients,
which are needed to combat oxidative stress.
The synergistic affect of providing all the nutrients needed by
one's body at the most advantageous levels results in optimizing and
rebuilding the body's natural immune system, antioxidant, and repair systems
back to their fullest fighting potential against disease.
I can recommend minimal and optimal list of micronutrients - if you
or they are interested. Also, there is a book by Dr. Ray Strand, titled,
What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing
You. He is a typically trained allopathic internal medicine physician, who
has opened his eyes to a better world of cellular nutrition and a
nutrition-based medical practice - and is VERY successful.
Yours in Health & Happiness,
Dear Al,
I suggest you refer this patient to a physician who can counsel and advise
him or her on the risks, advisability, and expected outcomes of amputation as a
 treatment for reflex sympathetic dystrophy (RSD). Any surgeon who
advocates this radical, elective procedure will be able and willing to accept the
responsibility for a possibly bad or less than expected positive result. Your
input in a controversial situation could be construed as being in favor the
amputation and with you being a prosthetist it could be viewed as a conflict of
interest if you stand to benefit by providing the prosthesis. You seem to
already to be very well read on the pros and cons and can answer general
questions about surgery for RSD but I suggest that you refer the patient to a
neurologist or orthopedist who can help with the specifics and whether this
surgery is appropriate for him or her. This is a medical not a prosthetic decision
area.
Sincerely,
Ron LeFors, C.P.O.
Dear Al,
I have been an AK amputee for 26 years due to trauma. I have had chronic
unrelenting pain, of varying degrees, for this entire time. I have tried every
treatment you have mentioned, with little success. I currently use a spinal
implanted stimulator and pain killers. This manages my problem but by no means
eliminates it.
I think amputation is a ridiculous answer for RSD. In my entire history I
can always find an orthopedic surgeon to cut on me. Of course it never worked
in the past, but they don't seem too concerned.
Try everything else, people in pain get desperate and are easily lead.
Sincerely,
Tony Kure CPO
Mr. Al Pike,
I recently attended the November 14 & 15 Chicago AAOP Seminar which
included a module on Pain management for the lower limb amputee. I had the
opportunity to speak with a Dr. Nicolas E. Walsh from the University of Texas Health
Science Center in San Antonio, Texas who appears to be a leader in pain
research within our profession. Upon speaking with him, he is extremely informative
about all the intrinsic and extrinsic residual limb pain which carries into
treatments.
Based on your question I believe you will find this physician very much
informative and knowledgeable about pain management and studies researched. In my
conversation of questions posed to him he was very helpful and detailed
about pain issues and pathologies. His abilities to relay strategies for
treatment of limb pain tend to be the safest, least invasive, and least expensive
therapies. He should be able to assist you with pain relief and improvement of
functional goals.
If you are interested in receiving the syllabus of the lecture or wish to
discuss the information please contact me and I will gladly fax a copy to you!
Sincerely,
Kenneth M. Heide CPO
Regional Artificial Limb & Brace Co.
Fargo, ND
701-364-9100